Adhesions How did it all get so bad

Adhesions

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Abdominal Adhesions! Hello and Welcome

I suffer with abdominal adhesions after surgery, this has left me in constant pain, its very hard as people do not understand the condition and when they look at you they think she looks fine. But Adhesions is a complex condition that happens after trauma surgery and can affect any part of the body or anyone but is more common in the abdomen/pelvis region.  

Trauma surgery on women can include, hysterectomy, appendicitus, bladder operations and cervical surgery, these are not the only cause but it is found to be more common in women who have had this surgery.

When I had my first surgery I was 16! and 7 operations later now at 44 I can longer have any surgery and I am left with Severe Chronic Pelvic Adhesions, Complex Bladder Dysfunction, IBD and Chronic pain. Basically alot of problems and symptoms...

I am sure there are many of you out there that are also fellow sufferers and find that there is not a lot of support or help for this condition with normally the doctor if he diagnoses you with adhesions only option is high opiods, with no other resolution.  Sometimes in rare cases or cases that have not exceeded the limit for surgery, you will be offered corrective surgery called a  adhesion dysectomy which will involve another operation to try to separate the adhesions and use a film to stop them sticking together. Surgery should only be taken with caution as the more surgery the chances of the organs sticking together increases with each operation. So it is a vicious rollercoaster that's in a loop the loop!

Adhesions are painful, very painful and can affect any organ in the body, the chronic pain that people feel can vary, but often making people not only trapped in their own body of pain but often isolating them from their friends and loved ones. Work is near impossible and it all seems very over whelming, often bosses not understanding the amount of time you are absent and the pain killers offer relief from pain but make you very drowsy and very often muddled and confused. which also lays a big impact on your employment.

After first being diagnosed with Adhesions, after visiting many doctors and hospitals, informing them that I was suffering, being ignored for 3 years and then yes finally, a visit to a private doctor who specialized in adhesions, I had an answer something I could call this horrible thing that had happened to my body.  Yes it helped but that was just the beginning as my 3 year struggle with Adhesions has only got worse, the pain is worse, the symptoms are worse.

I had to give up work and now have a carer, I am unable to go out unless accompanied and find that life is totally different with my adhesions. My blog is going to be my outlet for feelings and anything else that pops into my head...

Anyone who has adhesions will be able to relate to my blog and I hope I can offer slight relief, information, stories and maybe a few jokes!!!  Also I would like to let sufferers know they are not alone and there are others who are suffering like you, you never know maybe someone will get something from it.....


Comments 249 comments

IN2Deep 5 years ago

Very interesting-I never heard of this-thanks for sharing


Sharon 5 years ago

At the movement I'm at the first stage of trying to find a doctor who will help me,I had surgery to remove two large cyst and have a large scar down my abdomen and through my other two scars,I'm in great pain on going to the toilet and my stomach swells,I saw a consultant who said it was my self causing the pain tensing up, please can you help


Kim 5 years ago

I have adhesions too so8 know your pain. I'm 35 and had endo beginning age 14 and have had 7 surgeries also including a partial hysterectomy which was my last surgery back in 2000. I refuse to let them operate on me again as it only makes me worse. After my hysterectomy I was pain free for 6 months then the pain started coming back slowly and steadily. Now, in 2011 I am in constant severe pain and on high doses of pain meds. I also recently found out my colon loops like a spiral and my gi said it's more than likely due to my surgeries. I also recently have been diagnosed with IBD and IBS and am being tested for rheumatoid arthritis. I'm 35 and feel like I'm 65...I'm trying to hang in there but it's hard. I hope you are doing well, my prayers and thoughts go out to you.


sharon hughes 4 years ago

i too suffer after a mishap during child birth i now have three weeks out of four in severe pain im trying new things everyday im now using herbal tea .


Emmie Lines 4 years ago

Hi, I have been suffering since 2003 still to present day... On mst morphine now and still in daily chronic pain. I understand all ur comments as we share a lot in common life style suffers also my family friends and ex partners and others all think

It's in my head! I'm draining the benefits system and not really ill.

I am very lucky I have my girls that make it all worth while, I jus have to keep going 36 is too young to give up! Positive thinking and bloke out all the small minded comments! All the best to fellow chronic adhesion and endo sufferers ?


Corey 4 years ago

I was googling some info about internal scar tissue. I was diagnosed 4 months ago with a bulging disc in my back...so we thought that was the root of all of my issues (issues being crooked tailbone, forward leaning pelvis and extreme pain all over my L4-S1 area and across). Well my physical therapist is not so sure. I had an ovary removed when I was 17. My body tends to form very bad scar tissue...and upon hearing this my physical therapist decided to refer me to someone who specializes in this. I can't believe I found this article...this is EXACTLY what I was going through for the most part. Thank you


ms4tunate 3 years ago

Hello all. First off I'd like to say I'm sorry to all of you who are suffering from adhesions just as I am. I'm 37 and had a partial hysterectomy 7 months ago. Not only did I never heal but the reasons why I had the hysterectomy, still exists. Most doctors treated me as if I had made up my pain and as if I enjoy being hunched over or randomly yelling out in pain. Yes, how fun. My life has changed drastically. I would kill for a day that consisted of 3 hours without pain. On a scale from 1-10, a good day or a standard day is a 6. However, I do have what I hope is good news. I was recently put in touch with a different health system and in that system there is a physiatrist. She instantly knew my pain and I hdidnt have to speak much or even cry for that matter. Even the physical therapist that I am working with has knowledge of adhesions and the pain that they cause. Unfortunately, I will be having surgery in a week to undergo a complete hysterectomy and to hopefully rid my body of those awful incisions. I'm hopeful. We shall see. Good luck to you all.


samantha 3 years ago

i have fitz hugh curtis syndrome which is a collection of ahesions that bind my sub hepatic area, cause liver inflamation, nausea, pain loss of appetite bla bla bla , the peritubal adhesions cause twisting pulling pain and infertillity, the hot n cold fevers the swelling and the difficuties in breathing and walking can cause serious confusion and fear in the many that don't undestand what adhesions are and the torment that there body and emotional relationshps go thro. email grnqueen81@googlemail.com for more info or just a friend that's been there/ going throu similar situations.

Foe me the best advise i got is from a surgon in germany that has found a barrier method to prevent adhesions forming in the first place and does surgery for those whom have already. Made it clear to me never have surgery unless detremental to ur health as more adhesions will undoutably form!!


Stephen D Cox profile image

Stephen D Cox 3 years ago

Hello,

I had 4 major surgeries on my abdomen area, the most recent being end of October where I had whipple surgery for bile duct cancer. Prior to this I had always suffered from small bowel obstructions, occasional pain as well but now, 6 months after my last surgery that was a very complex, the most complex surgery done in the abdomen, I feel constant pain, 24 hours a day. I am on hydromorphone for pain, feel very depressed and am off work. I am told there is surgery but I am very afraid that this surgery would simply cause more scarring, as the writer says. Anyway, its nice to know there are folks out there like me. I am doing a lot of my own research so I can get to understand this issue better. So far, 2 Doctors I see either believe or feel that my pain is almost certainly from adhesions. I am undergoing more testing because I also suffer from fatigue which seems to be related to PSC, another lovely disease I picked up along the way. I hope people keep writing in. I am wondering how the writer is doing as I see she has not updated anything for a few years.


Beckie Roberts 3 years ago

Hello

I had my ruptured appendix removed in March, since then I had 3 bad episodes of abdominal pain and twice admitted to hospital. The last time I was finally diagnosed with a bowel obstruction caused by a kink in my small bowel caused by adhesions. They cleared the blockage with an NG tube and discharged me after 5 days. They was going to operate but said they would rather clear the blockage as my stomach is still very hostile after my appendix operation. The thing is I'm in constant pain, have terrible cramping that feels like I'm being stabbed and I'm terrified on what to eat. I just don't know what to do, do they want me to have another blockage before they do something. I can't work, holidays/nights out are out the question incase I become ill - I'm losing my mind :-(


Stephen D Cox profile image

Stephen D Cox 3 years ago

So sorry to read about your troubles. I have suffered from the same issues for many years. None of the Doctors could really do anything and so today I still suffer from adhesions and pain. Its a serious problem because a total blockage could cause strangulation and possible death. I found that eating slowly, avoiding certain foods like peanuts and other hard to digest foods has helped. The other thing is to ensure you stay hydrated. If you don't drink lots of water on a regular basis you will increase your chances of a blockage. I find drinking Gatorade helps, not a lot , but after a blockage, if you throw up you electrolytes get out of whack and you need to restore these lost vital ingredients and a couple of bottles of Gatorade is the best thing for that. So drink 6 glasses of water a day, watch what you eat, eat slowly and this should lessen the odds of another obstruction. If it doesn't then you might surgical intervention but this is often worse than the cure as you just create more adhesions and you can be worse off. I find that it takes me 3 days to feel normal after and episode. The bowel is very tender and there is a lot of pain after and any intake of food can be painful so I take clear broth and water and Gatorade for a few days until I am baack to normal, whatever that is.


Angela 3 years ago

I am 35 years old and have had multiple surgeries on my abdomen that have caused adhesions. I just came home from a trip to the emergency room because of severe pain in my pelvis and abdomen. While my husband drove me to the ER I kept telling myself that something has got to be wrong, no-one could be in this much pain. After a CT w/o contrast and a short how do you do, the doctor could find nothing life threatening and sent me home with a script for "pain meds" like I need anymore of those. I am so frustrated and sad because no one should have to live like this and to have the Doctor tell me, I am fine was a slap in the face because I am not fine!! The only real help I have found was in reading each one of your stories. After awhile you start to believe that the pain is all in your head because that is how some people make you feel. Well at least NOW I know I am not alone in this fight. Thank you all for speaking out, it really does make a difference to those that are searching and find your stories and comments!!


Pforladyluck 3 years ago

Hello everyone, I am so glad to have found this site. I do have some questions that I hope someone can help me with. I have suffered from adhesions since 1982. I have had 11 surgeries, 6 were from complete bowel obstructions due to adhesions. Last year I had 2 feet of my colon removed due to severe diver and spastic on both sides. Five days after my surgery the doctor took my staples out and my incision opened up in the parking lot. They did another surgery to close the top layer. Then I ended up with c diff and fought it for a year. Four months after that surgery I had another surgery to remove a huge hiantial hernia that had my right lung pushed over and most of my stomach was in my chest cavity, also they removed my gallbladder. I also form huge polyps that block my colon. I am in constant ripping pains that feels like a knife is inside of me slicing me up. They told me with each of my surgeries that I form massive amounts of adhesions. I was 24 when they had to do a complete hysterectomy because the adhesions had collapsed all my female organs. Two weeks later I had my first complete bowel obstruction and the doctor told me my adhesions were 8 inches long. The question I have is that every time I ride in a car I get severe pains so bad I feel like I am going to pass out. I get very sick to my stomach and then I get massive runs. What would cause that to happen every time? I am not able to travel anywhere anymore and it is effecting my life. My doctor tells me that I have adhesions so bad and there is nothing they can do for me anymore that I will have to learn how to live with it. How are you supposed to live with this.


Stephen Cox 3 years ago

Hello Pforladyluck,

You have certainly been through the grinder. I am not an expert but I too have suffered from adhesions for years and countless small bowel obstructions.

I have no idea why riding in a car would set off your pain except to say that over time adhesions attach themselves to organs, grow in and around them. In my case, if I lay flat, in a short amount of time, I will feel terrible pain. So I sleep sitting up. Interestingly, I too have have the runs, terrible bouts and Doctors cannot find any reason for this. Have you been tested for celiac disease ? You might want to rule this out but it sounds like this is not the case.

Your Doctor is right, there is little to nothing they can do. Further surgery just creates more adhesions. It's a vicious circle. Fact is if you did find a surgeon to operate, he might make things worse.

I take pain meds daily and stay home. It's hard. It's better to accept your situation and try to adjust. Perhaps there will be a cure in the future.

Take care.


Pforladyluck 3 years ago

I want to thank you for responding to my question. I guess no one seems to know that answer, not even the doctors. I believe it is caused by the adhesions being attached to my abdominal wall and colon and the movement of the car is pulling on them causing my colon to spasm and causing the runs. This is so horrible it controls your whole life. I am so sorry that you are going through the same thing, I wouldn't wish this on my worst enemy. My doctor doesn't want to do anything to help me. I finally got her to give me some pain medicine all she would give me is norco which does not even phase the pain. She said pain medicine would constipate me, I told her after a year in half of runs I would welcome constipation. Do you know of anything out there that helps with this constant pain? I was wondering if digestive enzymes might help, because when they did my surgery they had to kill everything off in my colon and I was on antibiotics for over a year due to the c diff. I have read an article from china that doctors have had good results from putting an herb solution in the abdominal cavity during surgery and the colon woke back up within two hours instead of two days, and because of that people formed less adhesions. Again thank you for responding .


Stephen Cox 3 years ago

I am always happy to talk to a fellow traveller. Sounds like you have a handle on why things happen when you travel in car.

As far as what helps me, sleeping in a chair helps. For pain I take hydromorph , the long acting and short. I have tried other pain meds but this by far is the most effective.

I don't have a colon so I tend not to read things about it. I had colon cancer so mine was removed many years ago.

I have not anything to help adhesions other than pain control. I wish it were otherwise.


Pforladyluck 3 years ago

Hi Steven Cox, so sorry to hear what you have gone through and still are. I have asked the doctors to just remove my colon I can't live this way anymore. I see that didn't help you with the adhesions. I get these spells where my colon contracts and the pain is so bad, my doctor told me that my colon is pinching and I need to move around or I will have a bowel obstruction. I told him how am I supposed to move when I am in so much pain and if I lift my head I am so dizzy I feel like I will pass out and I can't stop vomiting. With all the technology out there I don't understand why they have not come up with a cure. I will keep researching for help with this problem. I wish you the best.


Stephen Cox 3 years ago

Hi Pforladyluck,

My bowel obstructions are all in the small bowel. I had my colon removed, which might be something you can do and wear an ostomy.

You know for a fact that your problems originate in the Colon, ( large bowel) ? If so, you should talk to your Doctor and meet with a Surgeon. If your problems are in the small bowel then they cannot remove it. A section maybe but not all of it.

If this clarification makes any difference to you, I would pursue some discussions with your Doctors.


Pforladyluck 3 years ago

Hi Stephen, since I had my other surgery in my stomach I believe I now have adhesions in that area too. My ripping pains are now in my upper and lower abdominal area. They sent me to a surgeon and he told me they will not touch me unless I have a complete bowel obstruction. He told me I was lucky to still be alive, he told me every time they open me up it causes more damage and my insides are so damaged now. He told me all I can do is learn how to live with it. He also told me that I will probably have an obstruction soon because my bowels are pinching off and I have a lot of bends. He also told me taking my colon would be the last resort because I would hate it and be worse off. I just don't want to have to live another 30 years or so with this much pain and something controlling my life. I can never plan anything because I never know how I will be. I could be having a good day then get into the car and then the worst pains start. I read where in china during surgery they put a solution of herbs in the abdominal cavity and they found the colon wakes up within 2 hours instead of 2 days and people are getting less adhesions.


stephen cox 3 years ago

hello Phorladyluck,

well its best you listen to your surgeon but you can always get a second opinion.

I have not heard of the item you mention from China. it sounds interesting.

it may be that you are faced with a long term issue and somehow you will need to come to terms with it.

after much struggle, mentally and emotionally, I have accepted my situation. it was hard to come to terms with it. you likely need to do the same, otherwise you will stay in a state of distress. lets face it, life is not fair. but there it is. some of us get a raw deal. I find myself trying to help others who are struggling with on going pain, it helps me to keep my mind off my own problems. you can still lead a good life, you just need to accept your situation, come to terms with it and try to find peace. I hope you have a goid support system, famiky, friends. this is critical. if you like, we could connect through facebook or email. this site is not very active.


Jacek 2 years ago

Hi Everyone,

I'm not suffer from adhesions, but my mom does I don't know how i can help her. She feels worst and worst. Please send me on my e-mail (jacekstachowicz4@gmail.com ) some information about treatment, medicine or painkillers. Please send me also websites connected with this illness.

My mom had surgeries. Doctors suspected that she had problems with uterus and decided to remove it. Unfortunately, it wasn't a main problem which caused her pain. It turned out, these had been adhesions.

I'm asking you for help.

Bye!


cheryl Babb 2 years ago

I have had about 30 surgeries on my abdomen. They started when I was 14. I had alot of Female problems. There is absolutely nothing left in me but the essential organs you need to survive. I have about 2 Small Bowel Obstructions a year that require hospiyalization. My Surgeon refuses to go back in as my last surgery, around 2005, took 4 hours and my insides were a mess. I hurt 90% of the time. I have episodes where my stomach swells and I throw up nonstop, My General Dr blames my problems on the adhesions, yet he won't prescribe pain meds because he says it will only slow my system down more....I have been to the ER twice in the last month. This last time he said my blood work looked marvelous and sent me home on Bentyl- a muscle relaxer foe your stomach- WTH????? I cant seem to find any help so I just suffer in silence. The heating pad seems to be my best friend. I sure hope one day they will have a curw for those of us that suffer. .


Jen95820 2 years ago

Has anyone tried a really good massage therapist for soft tissue mobilization of the abdomen? I work as a physical therapist assistant and also massage therapist and have helped clients with peristalsis issues of the GI tract.

I found this site looking for info about women who have had C-sections and suffered leg claudication and numb, cold feet when laying down. My friend has had 3 C-sections and after her last, she developed this symptom. She has had US scans and MRI, all negative. I suspect adhesions of her pelvic floor to be the cause, possibly affecting her internal iliac artery.


Joy 2 years ago

I have suffered with adhesions after my c section and a number of emergency surgeries due to cervical cancer, ovarian cysts and utilmately a hystorectomy and just recently had my gallbladder out. I've been to the er in extreme pain and was actually nauseated and vomiting and they gave me nothing for pain. I've been turned down by 2.pain management dr because opioids is the only solution. I live in shreveport, la I'm willing to drive to texas or where ever for help. I'm tired of being a prisoner to the pain. Suggestions anyone? I need pain meds but drug abusers have made it difficult for those that need it to get it


Mandy killroy 2 years ago

I have had adhesions since my first surgery when I was 21, it got worse after I had to have a partial hysterectomy after I had my daughter. Then 2 years ago I had a cyst rupture on one of my ovaries which ripped the scar tissue and caused bleeding so had have another surgery. When they went in my bowels were adhered to my abdominal wall, my bladder was adhered to my cervix, etc. I felt better for about 2 months but then it came back, I've had the mesh used but it didn't help. To top it off I have endometriosis and they want to take my other ovary, I said no because last time I went home with a catheter for a month so worried what will happen if I under go another surgery. I always explain to people to imagine having your elbow sewn to your knee and trying to do things normaly, because that is the ripping pain I feel day in and day out.


Stephen D Cox profile image

Stephen D Cox 2 years ago

Hi Mandy,

Sorry to read about your situation. You have had and still having a nightmare situation. All of this is made worse because so few people understand it and Doctors are virtually useless when it comes to helping.

So sorry. I hope medicine finds some kind of magic bullet for this stuff.


Brandee 2 years ago

I am 35 and had surgery for a bowel perforation in April. I am also a r and y gastric by pass pt. I had my staples out and a wound that won't heal, now I have knots at the top of the scar and in server pain. My family looks at me like I am crazy. I guess I am better in there eyes but I feel like I am 65 not 35 and am afraid all the doctor is going to do is say deal with it. Help me


Stacy Stanley profile image

Stacy Stanley 2 years ago

Hello everyone, I would like to start by saying my heart goes out to each and every one of you, because I too know your pain. I had a vaginal birth in 1995 with a 13lb baby girl, then in 1997 I had a c-section and then in 2001 another c-section which gave me a total of 3 daughters whom I adore. In January 2002 I started having these terrible pains which I thought were complications from the birth but they got worse each passing day, so I went in to see my gyn doc and he did a complete hysterectomy. Thinking it was over 6 months later again this horrific pain, since then I have had 8 surgeries for adhesion removal. In total I have had 11 surgeries on my abdomen and the pain is still there and increasingly worse. I am 38 and I too feel like I am in my 70's, the doctors here all give me the run around and I explain to them this is the problem I was diagnosed with Pelvic Adhesion Disease in 2005. My problem is I have been working since I was 16 years old and now I can't work it's too painful, no one here in Florida wants to prescribe anything look like pain meds except Ibuprofen 800 mg and that is a joke. I filed for disability in which they have turned me down 4 times stating my issue is not severe enough, and I can't find any doctor or surgeon who will help me. I've tried physical therapy, surgery with the film placement and still IT HURTS! I don't want to be in pain for the next 40 years, all I want is for my pain to at least be a 6 on the 1-10 scale so I can deal with life. Right now my pain level is 15, and I have no outlet of help. Along with the pain, I have anxiety, depression, and stress issues who here don't, pain causes a multitude of problems. I used to be fun loving, vivacious, happy go lucky, and the life of the party, now I can barely get out of bed. I thought I was the only one who was going thru this!!!! When I would shake and groan in pain my family and friends thought it was phantom pains, or maybe I was over exaggerating the intensity of the pain, but no one knows how bad it really is. I once described it as someone shrunk a village of people, put them inside my abdomen/ pelvic area and gave them ice skates with razorblades on the bottom of them and let them freely use my abdomen/ pelvic area as a skating rink that is open 24/7. I've tried hot tea, hot and cold compress, lying on left side, pillows tucked, nothing helps. Anybody has any helpful advice? I am in desperate need of a friend who understands what I am going thru


Stephen D Cox profile image

Stephen D Cox 2 years ago

Hi Brandee,

I wish I could help you. I wish there was some solution for this awful problem. I wish I could get help but regretfully I have not found any solutions. For me, I sleep in a big comfortable chair. I never lay flat. I find it helps with the pain. Other than that I have no tips. My Doctors are useless. I don't think they even believe me even though my surgeon wrote in his follow up notes after my last surgery that he was shocked at the amount of abdominal adhesions he found when he opened me up. So people just add to our pain by suggesting we are faking or we are wimps.


Debbie 2 years ago

Hello everyone I have just found you I am not alone!!!!!!!!!!!!!!!!!!!!!!!!!!!

A brief history, emergency cesarean 1981, the start! Emergency, due to smear results, partial hysterectomy, 2 weeks later unable to move walk back in theater ovaries stuck and strangulating vagina, removal of ovaries and attempt to separate adhesion's. Emergency appendectomy, again attempts to separate adhesion, further surgeries due to emergency needs done and further attempts at these times to separate adhesion's.

Unfortunately I am also coeliac and have chrones for which I have to take drugs daily for (with all the other medications I would not be able to sneak up on anyone because I swear I rattle!) I am also asthmatic. A few years ago I also found out that I have ME due they say to the continual battle with pain and infections caused by the adhesions, ie bladder infections continually due to it being unable to move,twisted etc. Please anyone reading this look up ME to see if your symptoms match! I am saying this due to my luck in having a doctor who cares and informed me that this is very common in people who are in constant chronic pain. And guess what there is help out there for this!

What stage am I at now, cyst and polyps on my liver, cysts on my adrenal glands, if I was a "normal" person they would immediately remove them. However, any surgery now is impossible due to all of my organs are now stuck together, and I do mean all internal organs, my adhesion's are the type with their own blood supply and nerves, any surgery will mean the loss of vital organs or death, also the control of blood loss is also a fear, as explained by head of surgery .

Pain, 24/7, honestly I cannot remember not being in pain.

Why have I thought to write to you all on this site, yes I have absolute sympathy with you all I am there with you going through it each day, my husband is now my carer. And on this I would like to say that we must not forget our loved ones are going through this with us, they feel frustrated at the inability to help us, the lack of help for us, and please remember no one asks how they are!

Pain relief, I am on morphine and tramadol every 4 hours. As I have said I am lucky with my doctor and want to share with you all the help she is giving me........

firstly she has prescribed me buscapan (hyoscine butylbromide) 1 tablet 3 times a day. Now this is a product that you can by over the chemist counter if need be. This helps with the natural movement of air in the intestines and as in my own case my intestines and bowel are stuck so they are unable to move to allow the natural movement of air so this causes more pain cramping air blockages which then stops everything else moving through these organs again causing problems, especially if you have narrowing. This drug relieves this and it works! It is worth a try.

In the recent few months, and I do mean she researches all the latest findings, she has prescribed me another drug Neurontin


Debbie 2 years ago

Sorry in pain and pressed wrong buton.......................

as I was trying to say in the recent few months my doctor has prescribed me Neurontin (Gabapentin Nerves) as she said to me that they have found that this drug is working well with patients such as ourselves as our organs are stuck together when we move, they cannot, and this is causing pain to the nerves and damage this drug zeros in on the nerve pain. I will say that I have started on the lowest dose and gradually working up higher. I have already noticed a difference in the pain levels for example my actual skin (outer ) used to be ultra sensitive and tender this has gone. Many specialists say we have nerve damage so why are our doctors not addressing this, again I say I am lucky. The swelling of my abdomen, hands and feet cold, shaking etc has been down to nerve damage and now due to persistent research my doctor has done hopefully this drug will help.

I am 52 but feel 152, I struggle everyday and have been for over 30 years I changed doctors until I found one who believed the level of pain I am in.

Stacy I understand! I believe you! I am willing to listen anytime. It will be lovely also to have a friend, the first person who can relate to me!

I would also like to pass onto Stephen that I lay on my side to sleep but with the aid of a body pillow. my doctor suggested this due to sitting at most times is painful for me now but at first it was to release pressure to the intestine and bowel caused by gravity. I was instructed to lay on my side turn and support my body by " cuddling" the body pillow wait for my organs to settle and not to give up in the first few minutes. It is surprising how much gravity pulling incurs pain and discomfort.

My life has gone from struggling to work to now unable to work. I loved to cycle run swim etc . I have gone from being an ourdoors person to being trapped most days on my bed. Trapped within four walls. Everyone is in the fast lane of the motorway I am stuck broken on the hard shoulder waiting for a none existing breakdown van. But I am alive. I can still see my children grow and grandchildren, but yes life is hard.

There is fun times though as my doctor bless her put it, you are the only person I know that it is a celebration each day if I let wind as it shows the bowel is still working ok!!!!!!!

Today is a good day I have found you all!

If I find out anything else would you like me to pass it on, or even if someone would like to chat regulary please let me know .

Bye for now, take care, Debbiexxxxx

PS please feel free to pass the drugs information onto your GP's


Debbie 2 years ago

Hello Stephen, firstly thank you for taking on the task of website manager, taking the time to reply to everyone.

It has upset me that you are struggling to get help. (this may help others as well) The surgeon who found all the adhesion's Stephen, what I have found out for you is if you write to him stating the lack of help and understanding you are getting and asking him if there is anything that he can do ie. referral to your hospitals PAIN CLINIC, also you can ask your doctor to do this!!!!!!! Also asking your doctor for a second opinion to a specialist regarding your adhesion's and pain associated with them, they have to comply with this! Everyone is entitled to a second opinion legally.!!!!!!!!!!!!!!!!

All I can say is I am there everyday with you all in this I cannot walk to the bathroom without passing out with pain so wheelchair needed. I live in my bedroom on my bed as sitting is terribly painful My insides are stuck from my neck to my bum and now have restricted movement it involves my arm movements so writing this is painful but if it just helps one person it will make what I am going through has at least had a silver lining.

I hope this may be of use to you Stephen, take care!

Debbie x

Please if anyone wants to write to a lonely sufferer I will be here.


Stephen D Cox profile image

Stephen D Cox 2 years ago

Hello Debbie,

Thank you for sharing. You are dealing with so much. I feel very bad for you. My situation is not anywhere as difficult as yours.

I found this site a year or so ago. It's not very active but it's a way to keep in touch with others.

Take care Debbie.


debbie 2 years ago

Hello Stephen thank you for your reply. I do not believe I am worse than anyone, it does not matter who is worse as we are all sufferers of this horrible disease/disability, we are all in pain! Maybe it is about time that we all make this site more active! Post information we find to try to help ourselves, unfortunately we seem to be hidden, the bad side to surgery. Was any of the information of use to you Stephen? (or anyone else?)


Stacy Stanley profile image

Stacy Stanley 2 years ago

Hi Debbie

Thank you so much for reaching out to me, it meant alot! There are alot of us here to this page and I am happy to see I am not the only one but sad to know that all of us are dealing with this pain whether mild or severe. It does help to talk to someone who understands that you are not crazy, it's not in your head and this pain really exist. Because surgery is the only way most can see it most doctors think it does not exist. Trying to tell every doctor you encounter the problem then numerous specialists, er visits, it's overwhelming at times. I cry more than I smile most days because I DON'T KNOW WHERE TO GO FOR HELP. I love life, I embrace it because it could be so much worse, but whatever time the Lord has me here to enjoy it I don't want to live it in a bubble unable to enjoy it because of the pain I endure. What I hate the most is not being able to work and provide for my daughters the way I want to. Then have them deny me disability! I am frustrated too because I don't have a clue as to where to start to find relief for the pain. No one gives me any alternatives besides ibuprofen 800 mg, or surgery. Holistic Healing sounded interesting, and I was willing to try that but insurance won't pay for it. I don't know what else to do. I just know that it's inhumane to make people suffer like this.


Stephen D Cox profile image

Stephen D Cox 2 years ago

Hi Debbie,

Yes we should make this site more active and post articles or stories. Whatever helps. I found your story helpful and interesting. Not sure how many people come to this site. We either need to start a new one on facebook to attract more people or find a way to get this one going.


Debbie 2 years ago

Hello Stacy, thank you for your reply, it was lovely to hear from you. Yes we all have days when we are in tears with pain and then this brings depression. But I try not to give into it, it is hard though. It is the loneliness I find hard also. I have found keeping a diary that I can write down what I want to rant and shout about (better diary than taking it out on my loved ones). Also I note down the good things! To note down good and bad days, this has helped to pin point what I have done to cause more pain. And to find patterns, some foods can cause more air in intestines and bowel and so then more pain etc my doctor has found this useful also!

I had to go from full time work to now managing on my husbands wage and he has to leave me alone all day and worries terribly. I have on occasion been waiting all day for him to get home to get to the bathroom hoping not to wet myself.

I do not know how the system works in Florida, all I can suggest is researching the internet look for specialists to write to and then to have this information to pass onto your insurance, all the comments on this site print these pages of proof of others and the help and differences to drugs given for pain, is there a politician etc that could help in fighting your corner? I do think though to find someone that will help with proper pain relief is a priority! More surgery will only cause more adhesion's! Can you contact the surgeons who have found the adhesion's to ask them about pain relief and what they would recommend to then pass this onto your insurance? If your hospital has a pain clinic can your insurance refer you there?

I do not plan anything any more I take each day as it comes, that way I avoid disappointment. I try to accomplish at least one thing a day it may only be doing a bit of crochet or needlework but a feeling of self worth/ accomplishment helps mentally! Do you have any hobbies Stacy? I have a home filled with patchwork quilts I have made. It has been lovely to make these for my family also a lot of love has been stitched into them and they will still give them a cuddle when I am no longer here.You are lucky living in sunny warm Florida, here in Britain we are going in autumn, I dread it and the winter, the cold increases the pain due to tensing up if I get cold. Because of the nerve damage I now have I find it hard to keep a regular body temperature so even on a hot summers day I can be shivering with cold .

hope to hear from you soon, take care Stacy,thinking of you Debbie x


Debbie 2 years ago

Hello Stephen, how are you today? It has been sunny but cold here but the sun lifted spirits. Have done some crochet today so a positive, so a good day. Managed to get some sleep last night so this helped!!

I have to go to the hospitals pain clinic in February (sounds a long time away but where has this year gone) I am taking the information of this site to them so that they are able to pass it on to others like us, I will try to make a poster to place on their notice board, also on the hospitals general notice board. Also my husband is notifying the carers center of this maybe this can then go further than my local area? Could you do similar? Maybe a link from facebook to here? My doctor has the information to pass on in her circles.

Bye for now Stephen, take care Debbie x

Can anyone else help?


Stephen D Cox profile image

Stephen D Cox 2 years ago

Hi Debbie,

Good to hear you are taking control of your life as much as you can. I try to do the same.

Frankly I am afraid of pain clinics. I don't hear very good things about them . I fear they want me too get off pain meds and try yoga or some such thing. I am not into alternate treatments. I guess I don't believe they work.

I like what you are trying to do. Good on you. I wish I was more motivated but my doctors indifference to my adhesions has discouraged me to not trying anything new. I suffer from chronic depression and it's hard to reach out or search for answers. At least I know we all know in this group that we are faking it. I am thinking of starting an adhesion group on facebook, a closed group so things remain private. Thoughts ?


Debbie 2 years ago

Hi Stephen, I know you meant that we are not faking it just a typing error ha ha we are all human . Pain clinics, I have been in the past, they have all the latest information of latest drugs for pain and can offer things such as acupuncture (this can work) but also prescribe higher pain relief than your own doctors. They know about adhesions!!! Also combinations of drugs to take. Did you know that if a patient is in constant pain they are who doctors refer too? I am willing to try anything to help, they have helped me in the past so please give them a try if you can, they have helped me get the help I am getting.

If you do set up a site on facebook (never been on this site) then would you mind chatting to me? to keep things private and maybe be able to talk more openly sounds good to me.


Stacy Stanley profile image

Stacy Stanley 2 years ago

Hi Debbie,

Thanks so much for the information and your concern, it feels great to be able to talk to someone who really understands. Britain WOW that must be amazing, and beautiful. I have to put that on my bucket list of places to visit someday. Florida is nice the weather is great, we just have bad hurricanes. I wish there was a way we could talk off site, just to share more personal stories, and keep in touch regularly besides here. You quilt that's outstanding I never learned but adore the craft very much. I myself vent thru scrapbooking, and home décor projects you know small items to hang on the wall or decorate with. I love doing that and it helps to keep my mind off my pain sometimes. Most days I am in bed anyways so I try and make use by scrapbooking. I don't know if you will get this email but here it is stacystanley@bellsouth.net, or you can reach me on facebook same picture. It would be nice to chat and discuss alternatives that your doctor has given you in Britain. Thanks again Debbie for reaching out, and to the others here as well, it helps to know you have a friend who knows and understands what you're going thru. God bless


Debbie 2 years ago

Hi Stacy

Have replied by email also, great to know that you also have hobbies and would love to hear about your home décor projects. I have found that counting stitches has helped me through peaks of pain. I also have card making items/ art stuff, to be honest I would need a removal van if we moved just for all my crafting stuff!! BUT it takes away many lonely hours and when I am awake at night unable to sleep as so uncomfortable with pain if I can do something to help distract my mind from it all the better. I think we all will do anything at these times when you do not know wether to sit, stand, laydown or stand on your head and sing the national anthem!!

If there is anything I can do to help I will try , chatting to fellow sufferers has picked me up, that feeling of not being alone after over 30 years is amazing, my husband has noticed the difference in me and even he has commented "wow we are not alone" maybe a partners site would be good!

Take care Stacy xx


Debbie 2 years ago

Hi Stephen hope you are ok? Have you thought anymore about going to a pain clinic, they truly have helped me and got me the drugs, doctor and help I am getting now. Yes they do everything from acupunture etc but their main purpose is targeting chronic pain that is all they concentrate on. Well hoping that you and everyone else is keeping well speak soon hopefully.

Debbie x


Originalshoegirl 23 months ago

Do you think I could have adhesions?

Does it sound like I may have a bowel construction that could come and go?

Emergency C Section 11 years ago.

Treated for minor infection in wound site, 10 days after section.

Despite falling pregnant very easily the first time, no success in 2nd attempt, even after trying for years.

Since September I have been having severe backache, adominal cramps and pain in both my hips. The pain starts within 10 minutes of getting out of bed and the only way to stop it is to either sit down (if it hasn't become too bad) or lie down if it is severe.

The pain seems to be triggered by standing & movement, as I never get it in bed or When lieing down. I have it virtually every day, but some days are far worse than others. On a good day I would say it is about a level 4/5 pain, but on my worse days it could be the worse pain I have EVER felt! When it is at its worse, I cannot stand, sit, talk or even think straight. I have a high pain threshold, had teeth filled and stitches done without anasthetic, no pain killers when I broke my collar bone and was up and having a shower 7 hours after my C Section, I think what I'm trying to say is, I'm pretty tough! But this pain can be all consuming. I am taking non prescription painkillers just to take the top edge off the pain on the bad days, as otherwise I wouldn't be able to function at all.

I also have a very swollen, tender abdomen which makes lots of weird noises and on a couple of occasions I have woke up at night feeling really nauseous for no reason. I have also noticed that I get very thirsty especially at night. I have had blood tests done (nothing) and an ultrasound (nothing found) and I am due a CT scan tomorrow. I really hope they find something, but seeing as the test is done lieing down(the only position in which I am pain free) I don't hold out much hope.

I asked my Doctor if adhesions could be a possibility but she basically dismissed it, as I have only had 1 lot of surgery. But everything I have read says 1 surgery can be all it takes ?

I am getting desperate to find out the cause of this pain, it is really messing my life up.

I just want to know what I have, I don't want to keep going back to the Dr's, as every time I have a test done and they don't find anything, I feel like they think I'm neurotic!

Compared to most of the people who have commented here and are having such a bad time, I am currently in tip top condition, and I feel really awfull for moaning, but how can I do anything to try and improve things / make informed decisions if they don't know what I have?

Does anything I have mentioned sound familiar? If the CT scan shows nothing, do I keep pursuing this, or do I just presume this is what I have, get some good pain killers and cope? If I do have adhesions will the pain get worse? I am only 45 but most days I feel and move, like I'm 80!

I would really appreciate any info/ advice.

Thank you


to everyone 23 months ago

unable to post comments


concerned deb 23 months ago

dear original shoe girl how have you got on with ct scan have you found out any answers

Adhesions can occur after only one surgery, mine after c section, and yes pain is triggdered by movement as that is when adhesions are pulling against where they are stuck to


donna blitz 22 months ago from Littlehampton

I'm so happy to have found this site. I'm a 34 year old mother of two children who I can't be a proper mum too due to the pain.

I have been suffering with adhesions for nearly two years, it started when after a hysterectomy I had a very bad internal bleed and I nearly lost my life. After recovering from this I found out I had adhesions the pain was so bad I didn know what to do with myself I was on a lot of morphine thankfully my G.P is great and got me to see a consultant who specialises in adhesions. When he opened me up he could not believe how many I had he said that I was just full of adhesions he managed to free some of my organs and spray my insides. So we were hopeful that I would now be ok but unfortunately the op just caused more adhesions.

So now I'm on ridiculous amounts of morphine but I have just started with the pain team and the first thing I have to do is stop taking so much morphine so right now I. In agony and having withdrawal symptoms

It means so much to see that I'm not alone in this cause it really feels like it during the early hours when I can't sleep cause of the pain, so thank you for writing on here.


Claire Sheldon 22 months ago

Hi I had surgery for reconstruction of the vagina at the age of 18 which failed, I then had it agin three yrs ltr, successful. But I've got no womb, no ovearys, my bladder, bowel,are stuck to my stomach and main he artery in pelvic area, and I have adhesions over my ovarys. 10 cm cyst and fluid which they can't remove has said I would die on operating table, I'm in hospital constantly , sick none stop, on anti sickness but not helping, I'm in pain, swollen stomach, dehydrating but can't help me.


debbie 22 months ago

Stephen have not heard from you in a long time are you alright? Getting worried how long it has been. I hope all is well, take care Debbie x


Debbie 21 months ago

Hello Donna and Claire

Sorry that it has taken me so long to welcome you to this site but as you can understand have had a bad period of pain Adhesions suck!! and everyone that writes on this site suffer daily with them and the daily struggles of acceptance from everyone of the pain we are all in and the restrictions in our lifes that adhesions bring. We have all written on this site due to this and also the willingness to try to find help and others as it is only other sufferers that can truly understand. the pain is worse than child birth (that is only lasts for so long, this does not go away or have something beautiful at the end) I trully believe if we continually chat away together here and support each other even to just have a moan about your recent visit to hospital that was a waste of time or that you fainted reaching up for a mug to make yourself a drink (that has been my last 2 days experience)

Knowing you are not alone with suffering with adhesions and the pain helps so much and to know there is someone who understands and willing to listen is worth so much for instance myself and stacy have become good friends now emailing each other

We can just chat about normal life because end of the day we are just normal people with normal needs it is just that unfortunately we needed surgery and that has now made us have a disability of pain etc through in most cases life saving surgery!!

Well everyone take care and keep fighting for the relief of pain and please let us all know if you find something that helps . Debbie xx


marlena1 21 months ago

Hello everyone,

I have been experiencing severe and constant pulling and nagging abdominal pain for more than 2 months now. My pain is all over abdominal area and i also experience horrible nause.

It 's horrible feeling this way, day in, day out. The only way I feel slightly better is if I lay down, apparently due to adhesions not pulling. I haven't had an exploratory surgery to confirm adhesions and don't know if I should, as so many people are afflicted with more adhesions after exploratory surgery. But I've had several other tests done and all have been fine and all of this began one year after abdo surgery. What am I to believe and what should I do?

I am so very sad that this is the way my life has turned out but I have a very supportive mother and husband and am trying to remain positive despite all the pain. Trigger injections will be administered for first time at a pain management center I selected. Has anyone had any experience with these types of injections?

I am considering seeing a myofacial physical therapist in hopes of some relief. I will try anything legal if it's good for me.

What's a girl to do?? I just cannot fathom how the medical cannot find a solution to this terrible problem when people are living in constant, debilitating pain. The IBS community has some forms of relief, why can't we?!

I am in my early 40's and like many here, feel so debilitated, frail and old. The surgeons are so very quick to suggest surgery and yet the don't tell you the negatives of having these open abdominal surgeries... Just terrible. I am quite honestly, so very mad at my surgeon. A life of chronic pain with no end in sight is quite honestly no life to live.

Anyways, let's keep this page alive so that we can connect and share our stories. Thanks for reading this long winded message.


Serra P. 20 months ago

Hi to you all from Australia. We believe we have found a way of dissolving all adhesions - pelvic & abdominal. Once these adhesions are gone, they are gone forever, & there is no surgery - just a minor cost for some tablets. For further free advice, please email us on serra001@tpg.com.au.


kathy scott 18 months ago

I am crying at 5am i have been so lonely with this soul taking pain..my heart goes out to you all. May i co me back to you, my story is so much like yours..i thought i was going mad. Thank you.


stephen 18 months ago

hello everyone. Sorry I have been absent. I am recovering from very bad sepsis but i am back now. i will keep in touch.


Serra P. 18 months ago

Please don't post here unless you are willing to share. We look at posts like yours as Spam.

thanks.


Stephen 18 months ago

Hello Kathy,

I am so sorry to read your post. There are others that suffer as you do. It's hard because Doctors don't take us serious. But we know the truth. Please share with us whenever you feel up to it.

God bless.

Stephen


kathy scott 18 months ago

Hello stephen, thank you for your kind words.i amdevastated, i have just written all what has happened to me and pressed the wro g button i think i have lost everything.kathy


kathy scott 18 months ago

i was reading thru my *post* and i deleted the whole page by mistake. I will write it again. Take care. Kathy.


Stephen 18 months ago

Oh Kathy, that is so frustrating ! I would like to hear more about your situation.


donna blitz 18 months ago

Hi all,

My pain is so bad and just seems to be getting worse by the day. My doctors are trying to get me off morphine this is going to take a very long time due to the stupidly large amount I'm on so not only I have pain from adhesions now I have withdrawal symptoms to. I don't know what I'm doing most of the time I'm glad I'm coming off morphine as it got to the stage where I asleep all day but not knowing what they give me next and if it's going to help at all. I have had enough I really don't know how much more I can take.


Stephen 18 months ago

Hi Donna,

Sorry to read this. I am assuming you are referring to regular old Morphine and not some of the newer derivates ? I have used them all. The two I use now are called Hydromorph Contin, 8mg, this is a fast acting pain pill that you can take every 4-6 hours. I also take PMS-Hydrmorphone, 6 mg. this is long lasting and works best with the short acting. I take this twice a day. Every 12 hours. I have found these two be the most effective and least habit forming with few side affects.

Hang in there Donna. You are not alone. There are many of us who suffer daily with little relief of any improvement. I find talking to others helps. I believe some day something will come along to help us.


debbie 18 months ago

hi Stephen

so glad to see you here again as I have been so worried.


Stephen 18 months ago

Hi Debbie,

So sorry. I should have posted sooner. I moderate on 3 other sites so I get quite busy. Good way to keep my mind off pain.


kathy scott 18 months ago

Hello donna,so sorry to see you are having problems with morphine.

I saw a new doctor at our surgery a few years back now, and was prescribef morphine, which for me was literally my life saver. After a few, tweeks, with the dosage, i now take 2 x 60 mg per day, 12 hr slow release, plus, liquid oromorph. I to have experienced not good side effects, but i am so scared to reduce strengh or change meds. Not all docs. At my surgery are happy with my meds.yes, morphine is afdictive, yes i guess i am, but its for my pain, not any other reason,znd no offence to anyone,honestly. I cannot go back to other prescribed meds that do not help. To bd honest i do need a higher dose now, although with many other health problems, i take so many tablets, honestly, i don't know. You are a very brave lady, i send you my support, and my sincere wishes for some peace.


Stephen 18 months ago

Hi Kathy, it's to be expected you would need a higher doseage over time. Our bodies adapt. I just recently had my pain killers increased. This will continue over time but what else can we do ?

Hang in there. Gods blessing to you.


kathy 18 months ago

Goodmorning stephen thank you for your kind words.

since posting pain has climbed up and up, its gnawing at me now, i finallaly fell asleep about 6am, my family hve arrived and i, as always, i don't know how i am going to get thru. My husband is great ,buffer, but he has health problems, i try and smile for him to not give him worry, but after nearly 30 years of this monster called adhesions, we know. I will turn to the extra pain relief, i must get the courage to go to the docs. Surgery to increase my meds, i am 61, 62 this year, since i was in my 30,s since this seriously began, i stare now at a 90 year old womans face, as i did ll those years ago. Sorry very low this morning. Love to you all. Kathy.


Stephen 18 months ago

Hi Kathy,

My soul, you have been suffering for half your life. I am so sorry. I wish I could wave a magic wand and help you. My attitude about visitors, even family, is if I need to lay down, I just leave. Don't let anyone pressure you or put it on yourself. Do what's best for you.

I have found doctors basically useless when it comes to adhesions. Of course they know they can't really operate so other than pain meds, nothing much can be done. It's a sad reality.

I know how I feel but I am at a loss at what to say to folks like you. It's a miserable life. Have you considered a pain clinic ? They teach other methods to deal with pain. Some find it helpful.

I don't know if talking here helps but if it does, then keep talking. You are among friends and fellow sufferers.


kathy scott 18 months ago

Thank you for your advice regarding pain clinics. Over the years i have been to 3 clinics. One pain clinic gave me a steriod injectionin the groin area, at that time they thought the adhesions were only in one place. I was also given a tens machine. Im afraid they did not help me. The other clinic gave me lots of emotional advice. I was also offered a four week stay at a hospital in the city of bath. This covered many aspects of pain control, again emotion advice. As bath is 4 hours away from me, i couldnot do the long journey, the movement of the car increases pain, a d i do have agrophobia. I would say stephen to all who are offered a visit to the pain clinic please go, you never know, this could be good for you. I was so pleased to find your forum, i would dearly love tokeep in touch with youall. My apologies for waffling on. Lots of healing to you all. Kathy.


Stephen 18 months ago

Hi Kathy,

Thanks for your reply. You don't waffle on. Please continue to post. We all are in this together.


kathy scott. 18 months ago

Hello, i hope today has been a better day for all. I re-Read letters that have been posted. I feel so sad that it takes so long, and many trips to doctors,consultants,hospital, for the diagnosis of adhesions are reac hed, this is nearly in all letters. I had not had any mention of adhesions, u til 1995, and i had been ill for apx 8 years or more. May ishare as briefly as possible my life with adhesions. I had 3 c.sections in1974,1979,1985 a nd i had a sterilisation during the last c.section. my history of pain,bloating, naseus,bladder prob.bowel prob, notbeing able to stand, sit, walk because of the pain and leaving me a

emotion mess, and bei g told its in your head, sent me to the doctors almost everymonth. I could not hold down a job, too ill, after 6 years i was finally sent the hospital, i was prescribed many meds, and hormone patches,then i was discharged. Never were adhesions mEntioned. After 2 years i begged to be see again after laposcopy ther foound, my insides were a mess my bowel, bladder,womb all other parts of my body had had adhesions collapsed on my whole lower body. Pain had taken over my life on a daily basis for many years, horrendous chronic pain. a total hysterectomy was offered and i was elated i thought my pains would be over. Unfortunately, only a partial hysterectomy was performed. I was utterly devastated, this left me in the same pain as iwoke up from the op! A year later,after again, backwards and forwards to the doctors, with all the symptons i had had for years, i had the rest of the hysterectomy carried out, my ovary had ,wandered, cystic, and four times it normal size, that was 5 ops in the same places. I will stop here,and thank you for reading this. My heart goes out to you all, there is so much more to tell, but i,m sure yku have walked the same road as me. Kindest regards, and much healing. Kathy.

my best wishes to you stephen i have kept this posti g as brief as poss. Kathy.


debbie 18 months ago

hi Stephen, question what sites are you on? are they better than here? do you mind sharing?


Stephen 18 months ago

Kathy,

Your story is a familiar one. Yes, too many Doctors never think about adhesions which is why I suggest people talk to their surgeon first.

Kathy, I pray that someday people like us will find relief. Hope is all we have right now. If you can, try listening to calming music or read the Psalms or do both. Have someone read to you if you can't read yourself. Taking your mind off the pain is helpful. Thank you for telling us more about your story. I hope others will do the same.

Blessings,

Stephen


Stephen 18 months ago

Debbie,

The places I moderate have nothing to do with Adhesions. I moderate a Caregivers community, an ulcerative Colitis community and two different communities for those who have Primary Sclerosing Cholangitis, a rare disease that affects the liver and bile ducts. I have UC and PSC. I started the caregivers community over a year ago so that unpaid family caregivers can share with others what they deal with daily.


Donna blitz 18 months ago

Hi thank you Stephen and Kathy,

It's 3:30 in the morning and yet again I'm still awake due to pain and knowing I have my monthly check up and morphine reduction today not looking forward to it. My dosage of morphine really got far to high for me to continue on I was just a zombie I was on 1200mg of MST Continus twice a day and also around 2000mg of oral morph my body just got used to it and doctors didn't know what to do so just kept upping the dose until I saw the pain team and they could not believe how much I was on and said that most people would die with that amount I'm now down to 600mg MST and around 80mg oral morph but the pain is like hell on earth and know one will tell me when they will give me something else to help if there is anything else I have also tried a tens but that was no good. It really does help to have people who understand my family and few friends who still bother with me are great but as much as they try they don't know how bad the pain is. Sorry for going on a bit hope everyone is as ok as they can be.


Stephen 18 months ago

Hi Donna,

This amount of morphine is shocking. Do you have someone who takes you to your appointments ? I imagine you do. You really need an advocate, someone, a family member or friend that can speak to Doctors, push for answers and find an alternative pain killer. I use Hydromorph but I am not sure it would work for you but there are lots of options out there. It sounds like you need to push back and basically demand what they plan to do for you.

I am so sorry you are laying awake in pain. This is so sad. Helping patients control pain is a basic requirement of all Doctors. Is your Doctor a pain specialist ? Sorry for all the questions. I wish I could help you. It's so frustrating when I see people who need help but are not getting it. As I say, you need an advocate. You are too sick to properly get the answers you need.

God bless you Donna. My heart goes out to you.


donna blitz 18 months ago

Hi Stephen,

Thank you for your kind words it really does help hearing from people who really understand. I am very lucky to have an amazing husband who looks after me so well he comes to all my appointments and has asked time and time again what happens next I don't think they know themselves all they keep saying is I need to get off the morphine.

I see my G.P once a month and I also see pain specialists once a month my G.P is good she would like to do more but admits she doesn't know how to help me anymore .

Hope your doing ok .

You are helping by being on here and all you kind words so thank you.


kathy scott 18 months ago

Hello donna, im so sorry you are in so much pain, i am sending you a healing hug, and that you will be allowed some peace tonight.

i to know how lonely the nights are, and i hope between your gp and the pain clinic dr. They will be able to help you. I have learnt from stephen that there is different pain relief other than morphine. I am so very grateful to have found this forum


kathy scott 18 months ago

Donna, i am so sorry to have ended abruptly, i keep losing my text.

You so need help, stephen, do or can the g.p recommend a hospital *rest*? I do recall meeting lady that hadvreached a very low point and was given respite. I hope i haven't frihhtened you donna mentioning the hospital, so many times i wanted to just hand myself over for care, knowing that could help you would be great.

please post if you can what the g.p has prescribed you for pain, the dose is incredible. Bless you for being so bra e and strong.with healing thoughts RUSHING to help you. Don't know how to do a smily face.


kathy scott 18 months ago

Hello donna, i did sen d you a further post after my last one ended abruptly ? I will see if this little note is posted..i keep losing my text. I will keep see what happens. My sincere healing thoughts arewith you. Kathy


kathy scott 18 months ago

Me again, i ment to say stephen,thank you for suggestinging calmi g music. I have only just recently started to listen to chantings this i fin d is very soothing., i to recommend listening to music. Such a simple thing, but it helps, I am still learning....

Kind regards kathy.


debbie 18 months ago

Hi everyone, thanks Stephen yeah I have chrones too as you know and other deaseases crikey isn't life bad enough for us dealing with adhesions. Well at least you understand why I have not been active on here for a while I have tried to say hi but going through a really bad spell at the moment. I do not know if I told you but as my walking has become so bad (had to go to wheelchair all the time now) and falling all the time and other things they are positive now that I have MS to put the cherry on top of the cake!!At the moment I feel like throwing in the towel. But I just really wanted today to say hello to everyone and I am truly sorry to hear of more sufferers. We just need research into finding a cure or at least a way to stop this in the future for others. But a big hello from me to Kathy and Donna, music helps and admitting even though we don't want it higher meds but I agree with someone there to help ask questions etc got to go for now as struggling with the shakes take care everyone xxx


Kathy scott 18 months ago

Hi to all fellow travellers...on the adhesion road...

donna, i hope today and nite has brought you some well deserved peace. We all have said, at our lowest times, why me? I do not wish this pain on anyone, i guess what why me means is, why no cure? Why no knowledgs, back when this started for me, i had the ,old guard, of drs. Consultants, refusing to accept all the symptons and the pain they brought. Only recently, i have been told by medical people, drs. Are finally accepting adhesions exist! I call this illness, a road travelled, to me that's what it is, and i don't know where it will lead. I know that i need to tell the gp. That i needanother ,surgery/op, on my bladder, the adhesions constantl grow and ,strangle my bladder, which causes me, many problems,infections,pain, connstricting, so i end up more doubled up, this will be the 4th time in, the consultant is very kind and has said when i need to go back let the gp. The consultanr knows what needs to ve done. I would advice, the 3rd op. Was carried out by local aniseptic,a new procedurw, rather than a general. I found the procedure extremely distressing and very very painful, i hope i am not a wimp, but i could not go thru that again, without a general.

I hope you are having a better time at the moment stephen, my very best hugs,healing to all. I wish you a peaceful night. Kathy.


Stephen D Cox profile image

Stephen D Cox 18 months ago

Hi Kathy,

The Doctors I see actually squirm in there seat if I raise the issue of my adhesions. The two surgeons I deal with have no issue discussing it and see it as real. It's an odd thing. Every year I have to give my insurance company an update on mu health. My GP fills it out, however, I cannot get him to say anything about my adhesions. Yet he prescribes pain meds for it. Very odd.

I too wish you healing, peace and hope. I won't ask if you are feeling better because I know that is not happening. So wishing you comfort and peace is something we all need more of.

Take care.


Donna blitz 18 months ago

Hi all

Kathy I like to thank you for all your kind words it is so helpful to hear other people ideas on pain relief I haven't tried calming music the best thing for me is cuddling up to my husband and kids also my lovely dog.

I seem to be lucky that my doctors know about adhesions and how bad they are but they still can't do anything to help.

It's taken me 4 hours to write this so I'm going to go and try to get some rest hoping everyone can get some peace and comfort xxx


debbie 18 months ago

Hi when I said about throwing in the towel truly I am backed into dark corner at the moment, the lowest I have ever been, i am alone with the pain and everything else, in under a fortnight asthma and eczema really bad, chrones kicked off, dealing with shakes and leg dragging behind me when I try to walk and the rest of stuff that goes with MS, also badly ememic so that is not helping the ME. Oh and cysts flared up on adrenal glands Adhesions are so bad that I want to get a knife and cut my insides out to give myself some respite as normal. Seriously I cannot deal with all this they say I am strong in how I have been dealing with it all but but i am not and that is just a face I put on for my husband, truthfully I have looked at my meds lately and thought why not I cannot fight it all anymore. I am tired wore out and cannot cope with it I am screaming inside and out at times when I cannot hold it in, it is just not physically but mentally. Over 30+ years in chronic pain and other medical problems is enough. Each new day just means pain and more pain and daily physical problems to struggle with nothing else to look forward to bar my bed and meds. Sorry I just need to off load how i am feeling I just need to talk to someone who understands sorry pain is so lonely

Stephen could you let me know the caregivers site is for my husband please as he is struggling to work and care for me out of love but no one who understands his side, and I so love and worry about him.


Kathy scott 18 months ago

Debbie, please, stop, take a breath, keep breathing take it slowly...you are me, i can feel your pain, distress and despair. I am sending healing, and i am with you. Its so hard this dark place its cruel. I too have a hus band who has watched and despaired like your husband, so many times, yes over the past 30 years, looked at me, and felt useless, *what can i do, tell me...* i cant tell him i don't know...nobody knows. I dont tell him, that opening the *my* medicine cupboard i could easily make all this nightmare go away..the nites of dialling samaritans...i have been blessed with children,grandchildren a house of wonderful pets....but i feel so lonely with this monster that took over my whole body. I hope you you find some peace today debbie. With much love kathy


Debbie 18 months ago

Thank you for answering Kathy, thank you for being there. I am the same with my husband all last night asking what could he do, but how can you say please put me out of my misery honestly, if I was an animal they would put me down. one disease is enough for anyone to deal with but the amount im supposed to deal with it is too much to cope with. The adhesions are so tight they have pulled a 53+cm hernia and caused bleeding somewhere causing the enemia Its a new day and I have not slept because of pain and struggling to know how to get to the end of the day I am shaking with the pain, cold but clammy, crying and watching the clock for my next meds in the hope that they might work better than last time and it does not help the knowledge that the doctors say to me that the best they can do is try to keep me comfortable to the end The pain is so unbearable every day this is no life I wrote here to avoid walking to the meds bless you kathy for your kindness and understanding love debbie


Donna blitz 18 months ago

Debbie I am so sorry things are so bad for you I wish I could have an answer for you just to help with the pain but as we all know there is nothing out there for us. I can understand the feeling of just wanting to give up needing the pain to stop once and for all I'm so glad you decided to write on here I wish I could give you a hug at let you know your not alone even though in the early hours when pain is unbearable it is so very lonely. My husband also feels so bad that he can't help me it is so hard for our families too. I hope this makes some sense as I have had my morphine lowered again so I don't know what I doing and I keep falling asleep while I'm writing this. All my love .


Kathy scott 18 months ago

Hello, the birds have just started to sing, my pain is still throbbing away....i am tired. My healing thoughts are with you. Kathy.


Donna blitz 18 months ago

Morning Kathy,

Hope you can get some rest . I have been up all night with pain and withdrawal symptoms that are horrid. Try and have a good day.


Kathy scott 18 months ago

Hello donna, thank you for writing,i,m so sorry you are having pain as well as the horrid symptoms of withdrawal. You are so brave,unless you have experienced withdrawal you cant imagine how awful it is,mine were so awful i asked to see the dr. As an emergency. Morphine is my ,crutch, and extra oromorph along with pain meds for other problems. It still hurts like hell.take care and i hope you too have some peace.kathy.


debbie 18 months ago

Morning Kathy, Morning Donna, morning Stephen

Thank you again Kathy for being there at a bad time, in a better frame of mind today whoopy had 3 hours sleep new woman yeah need more though, I must have moved in bed and woke myself up. Husband trying to help and has ordered a soft soft mattress so as to cushion me as my actual skin hurts (severe nerve damage spoke of this before known to adhesion sufferers). Did I tell you guys that they have given me an electric wheelchair for in home so as to help me be somewhere other than my bed honestly have any of you tried to drive one on the meds we all take hence no paintwork left anywhere and doorways trying to be stretched!! husband said like watching the wacky races with my dirty laugh to go with it!! I do love him! But just wanted to say thanks again Kathy still down but not alone now so much a big hello to Donna (same one as I welcomed here 4 mnths ago?) lets keep the spirits high and the fight going girls and boys !!! much love and thanks debbie xxx


debbie 18 months ago

Morning Kathy, morning Donna, morning Stephen

Not such a dark corner this morning, flags are flying managed to have 2 hours sleep before I must have tried to move in bed and woke myself up with pain of moving, husband trying to help and has ordered a soft mattress, I do love that man (my skin hurts spoke of nerve damage before this increases our pain due to the nerve damage we all have caused by the adhesions, latest findings found by my gp but not shared amongst us) anyway have I told you all they have given me a electric wheelchair to enable me to be somewhere other than my bed, my husband says it is like watching the wacky races with my mutley dirty laugh to go with it!! have any of you tried to drive one of them with the meds we are on crickey they have given a mid 50 a joy stick!! try steering with that and not a wheel!! no paintwork left and doors refuse to stretch- stubborn sods! But just to say new day new fight so keep the spirits high the fight going and love amongst us all Donna are you the same Donna I welcomed 4mths ago? love to you all girls and boys Debbie xxx think of the wacky races goingsomewhere the joy stick takes her xx


debbie 18 months ago

lost all text redid but then it appeared found that to enlarge this box aids submitting and not losing text!!


debbie 18 months ago

do you all find life hard in the simple things for instance I need a haircut, asked dear hubby to get spirit level out of garage and cut but no scared of ruining it, so hence hair down to my bum, really annoying trying to get hair appointment when will I have a "good day" be able to sit long enough as sitting straight in a chair is mega painful, so people say get a mobile heh are they not understanding still need the same things plus then I would have the mess! Well off to take meds, make coffee and read fifty shades of grey!(hubby brought it for me ????) hoping to lay on bed and take my mind off pain. well here goes the joy stick drive love to you all as kathy so kindly said breathe

Donna thank you yeah writing on here helped found and wrote on site 7 months ago or more (do not know if you read it?) yeah more pain as they are lowering morphine as addictive and withdrawal symptoms are hell at the moment for me so understand where you are coming from. I was a mega zombi and did not want to miss out on life around me and I knew the pain levels would increase but hell it is hard to cope some days. this site helps though. I was missing for some time due to being really ill but here again now so can have a good old chat but more importantly prop each other up as kathy and you have done to me helping to hold my hand guiding me out of the dark corner feeling someone understands truly what we are coping with 24hrs daily, weekly, yearly is so so wonderful it helps to make the loneliness of the pain that much more bearable. well boys and girls fifty is waiting for me bless him!! (trying to brush hair a simple thing brought this on!)


Stephen D Cox profile image

Stephen D Cox 18 months ago

Hi Debbie,

You are full of life this morning. I can just see you in that wheel chair knocking stuff off the wall, running over the cat and wrecking all the kink knacks. Funny.

So you are reading THAT book. I bought the series for my wife. I think I must have lost my brain. Movie is out but I won't watch it. I am taking a stand against, against, I don't know really but I am taking a stand.

My adhesions are not as bad as yours or Donna's and Kathy. I can by with less pain medication. Sometimes during the day I will bend over and yell out in pain. But this does not happen if I just move. I can't sleep flat, I have to sleep in a chair which is sad. I miss sleeping in bed with my wife but she is very understanding. Thank God for understanding spouses.

Somebody suggested, the other day, I go see a chiropractor. I didn't have the energy to explain why this wouldn't help so I just said thanks for the suggestion. Do others find it frustrating to make others understand what we go through ? I think friends believe I am faking it. Invisible illnesses are the worst.

I hope today has some light in it for each one of you. Even just a moment of peace, of happiness and hope. Oh how we need hope.


debbie 18 months ago

Morning Kathy Donna and Stephen and everyone

well did not run over the cat Stephen but went so quick towards the toilet that nearly had my head in it before the breaks went on! Oh for a steering wheel! Well series of books brought by hubby also, worked a treat as taking my mind else where just worried as he did buy new tie at weekend and it was grey ;)! but then what the mind wants to do but the body unable are two different things nowadays ! Kathy Donna go girls get a copy !!What an awful day and night as far as weather, today not much better thinking of all my birds nesting in my garden the rain and wind was dreadful. Well hubby gone to work, alone once more that is worse part, phones with emergency numbers in beside me and the idiot left the highway code on the bedside table! Well if we don't try to see the funny side and try to keep a sense of humour we will lose it totally and the dark corner will not be shades of grey it will be black again like the other night when kathy came to my rescue. I remember the first time we spoke all those months ago Stephen and remember that feeling of not being alone nice to see new people and site being active but sad that more are suffering in pain from s-----y adhesions, and I have told you before there is no worse if you have got them you are in the same pot you are suffering the same!!! Well off to find that cat (have a yorkie will that do but she has brains she jumps up into chair) joy stick at the ready coffee calls and maybe a bit of fifty, love to you all maybe speak later! :) (my smily face) debx


debbie 18 months ago

Hi Stephen and all yeah it may sound as though I am full of life again but thought I would explain - the face to the world is firmly back in place with super glue this time but inside i am still screaming with the pain and desperate to have an end to the constant pain but when hubby goes to work I can relax and let it slip and lay crying and writhing with the pain but i hear his key in the door and once again the face goes on as how can i show the truth to him when he is trying with every atom of his body to help me to love me, do i do the easy way to ease the pain and take all meds can i do that to him when - when he is here or out so he finds me NO i can not do that to him but the dark corner is there always and it always has a hold of me but i have a face to put on that people want to see because they do not want to deal with how i truly am and the old me with a sense of humour and a person who cares about others is still there but the pain and dealing with all medical problems is a film like cling film over the top that my old self claws at to get through. Have any of you noticed that people when they see you in constant pain start to disappear as unable to deal with it and this is a time when true friends shine through. friendships new are hard to make when you are trapped as me in home. All adds to the darkness and at night when the house sleeps and i am awake in pain trying not to wake hubby who has to work next day so scream into a pillow the dark corner grips me hard. so face is on but really the pain is crucifing today and in tears as i write this, but would rather try to show you my old self unless desperate as the other night when i slipped into the dark corner. xx :(


debbie 18 months ago

Stephen quick question have you seen those new double split beds one is normal one goes as a lie back chair however laid back you want they are to enable couples to be able to stay together there is even a chair that turns into a bed (do you want co info?)

agree totally talking to none sufferers is talking alien language or is it that they do not want to listen?


Kathy scott 18 months ago

Debbie,i have just woke and seen your letter. I am so sorry, i read your letter but see you as you are on a video tape...every detail you describe i see and feel. Like you i have learnt how to cry quietly so no one knows. How can i help you, i am with you holding your hand, quietly trying to say the right things too help, or just sitting quietly. Together we will fight this monster, ok we are all down at the moment,but and old cliché we will get strong again. I am asking for healing for you, with all the people like us, in pain whatever way they arrived as having a life that has too be faced the hard way.with much love kathy. I do hope you get to see this, i keep losing my letters, i don't want you to feel alone. X


debbie 18 months ago

hi Kathy are you still there? did you read the other letters i wrote today? I do believe that we all put on a face to hide how we are feeling me i do not want to be a problem and also afraid to scare people away as lonely already, I do appreciate how you can understand what I am saying as not so great trying to put into words what i am feeling,. love Deb :) xx


Kathy scott 18 months ago

Hello debbie,ive just got back from the g.p. that seems the only time i go out, that dentist,chiropodist. ..the car moving increases pain, the isolation of being at home, has given me a problem with going out. I find that difficult. I did read your last letters and i do understand about putting on a face, i call my face ,the switched on smile, over the years i have seen psychologist and pain clinics and counsellors to help my depression. I see a lovely lady every two weeks, she believes me and we talk about pain and trying to live. I do smile and say i,m fine, but you know your not fine, and when people go or leave the house you can show your real face. I don,t have friends i let them down so i just have my husband,children and grandchildren. I have been quite poorly with gastritis i did try and post it, but it never came up. Debbie you do explain how you feel, i feel for you so much,you really are an amazing lady,honestly,take care love and healing kathyx


Kathy scott 18 months ago

Hello debbie, just a little note i did write to you when i came back from g.p. there is no sign of it yet, i wrote about an hour ago?

this happens alot, i must be doing something wrong, il leave it a bit longer then write again. Take care love kathyx


debbie 18 months ago

Hi Kathy, yep it happened to me as you saw so wrote it all again to only have the first lot appear well now I write it, post it, go to the loo and see if it appears ha ha Well a friend here you have and as I understand what you are going through daily how can you let me down? that's how I lost friends they either thought I was lying or fed up with not well enough to do things or saying not to come here as not well enough, its really hell the loneliness but finding this site has helped so much. Sadly it just was not my personal friends but joint friends of mine and hubbys so he has suffered because of me. Good thing about this site is at least we can be honest as we are all understanding as all in same situation and if I say insides have been and are being scrapped out with a blunt knife and at the same time a pair of ice skaters are doing an olympic routine you will understand the feeling and that is with the morphine on top of everything else and has been like that since about 3am so starting to wear me out.So I am going to lie down and hopefully dose for a while if I can hubby settling down to watch a film, but please remember always here if you need me Kathy, I don't have it on all the time but will check regular incase you need me, so goodnight for now (maybe back if cannot sleep) lots of love FRIEND love to you all, take care Kathy love Debbie :) xxxxx another day got through, half a year got through so we are all fighting strongly x


Kathy scott 18 months ago

Hello debbie, wrote you about three hours ago? Oh dear...i willwrite again, im so groggy. All my love kathy xx


debbie 18 months ago

nearly 3am thurs morning and still up in agony, hubby snoring but dare not wake him, yesterday b12 injection first of many to help with anemia,nurse said sorry about the needle as it might hurt kind of her but did not like to say "if i can swap it for the pain I have I will do it" she was too lovely. I am so tired but in too much pain to sleep maybe keep banging head on wall to take pain elsewhere might help?The really big thing I miss is walking down the street holding hubbys hand, such a simple thing but to me a big thing to miss!


Donna blitz 18 months ago

I'm feeling so bad I'm in so much pain on top of that I have got the shakes and my bones feel like they are going to explode. My husband and kids are all asleep i wish I could be the wife and mother I used to be I feel like I'm useless. The pain is so bad I don't know what to do with myself I just want it to stop.


Kathy scott 18 months ago

My dear friends, im so upset,not one of my letters are coming up,idont know if this will either. I am ever so groggy, im takung ztronger tabs. Ill take you pains, a little more it does ,t matter, i am so sad you are not seeing my letters., ill try and sleep, then i,ll try a d write again. My sincere love peace and healing . Kathy xx


Kathy scott 18 months ago

Cant sleep, so so upset, i am writing to you to let youknow im here and sharing my days and nights, and its not showing. The hub box hasn,t shown for over an hour, so i couldn,t even try and write. I too miss my previous life,walking with my husband taking the dogs for there walk, all gone, i could not play with my children and am in no way a proper nanny to my granchildren, no fun, no trips to the playgrou d, not fun sleepovers how i miss all this..i hope this is shown, love, peace and so much healing, sorry very low, a d starting to feel isolated again. Love kathyx


debbie 18 months ago

morning Kathy hello friend Iam here for you now, sorry not here sooner. Kathy I will try to make sense to you but totally getting zombie fied this morning as you are with so many stronger meds (Ihave to keep deleting and trying to get spellings right) Yep I think everyone here misses our old life and as far as you being not a good mother or nanny well then so am I because what you are saying is me!! BUT we are there for them and have always been trust me as my son said to me the

heart to love

arms to hug and hold him tightwhen upset,scared or needing to just have a hug

ears that always listened and still do to the good and the bad

eyes that have noticed when these have been needed and not had to ask

a home that welcomes because I am there with all those things inside me

Yes a ball can be thrown but does it hold all the above and that thrown ball lasts just seconds where the above lasts forever in hearts and memories

Kathy you sound the most loving and wonderful woman and I just know that you have all the above in you and your childern and grandchildren know that

Kathy I live near Bath is that close to you? because I am honestly here for you!!all my love and big big hug Debbiexxxxxxxx


Donna blitz 18 months ago

I have just seen my pain team and what a waste of time that was they said its going to a year for me to come off the morphine and they are not going to give me any other pain relief until I'm off and I can only have one bottle of oral morphine a month I don't know what to do the pain is so bad. sorry to go on about things donna x


Kathy scott 18 months ago

Oh donna, how awful for you. Would a visit to the drs. Help? I know uou are


Kathy scott 18 months ago

My other message to you cut me off.

i know you are struggling, i havenever had a pain team, i don't know how it works? I would go back to the g.p, we have to keep knocking on doors, even when we are at the end, and our spirit low. Take care donna, love and healing kathy x


Kathy scott 18 months ago

Add Your Comment.

hello debbie,im sorry its taken so long to reply, i ha e been to the chiropodist, i slept till very late. I have been waiting for the hub box to come back. As i am typing the cursor is stopping and disapearing, i don't think you will get this. Thank you so much for your kind words and such a lovely poem, thank you my dear friend, debbie i have just stumbled, again, im a bit shook up. May i come back too you.lots of love kathy xx


Kathy scott 18 months ago

Hubs back debbie, fingers crossed. Your lovely poem, brought tears to my eyes. I will write the poem down, it speaks for me. I am struggling with the new meds. I do hope it helps. My g.p. Who is a lovely lady, actually said, theirs nothing else they can do. That's ok, i know, ive k own for ever really.

I have had a walking stick for years now, and have a mobility scooter. I did try a d say before,so sorry, if i repeat. I broke my nose at the beginning of the year. Iam going this month for my pre.assessment. i got up in the night, as we do, with my stick,next mintue i smashed my face agai st the door frame, i just stumbled books,chair everything went, i knocked myself out, and brokemy nose. I shook myself upjust now, oh what a nuisance i am. Im going to go now,and start again.love kathyx


Kathy scott 18 months ago

Hello debbie, i haven't ask you how you are? Ive been all me,me,mei hope you have had some peace, but as i haven'theard from you? I had to smile when you asked if i was near bath, my middle daughter loves Bath and with her and her partner, visit whenever they can.also, my daughter loves history,and goes to societies who meet and dress in georgian costume. She did marry in Bath, dressed as lizzy be nett from pride a d prejudice! Unfortunately, her marriage didn,t work but i know she would loveto live in Bath. I live in Norfolk., so i know its about 4 hrs away.

i got really upset when this forum goes down, but im hoping i can always write andmy dear friendsare there. I hope stephen that you are having good days, debbie sorry about today.sending love peace and heali g kathy xx


debbie 18 months ago

morning Kathy and all, are you alright dear friend from falling have you told anyone, please do so that they can check you are ok wish we were closer kathy it would be lovely to meet up, listen up everyone maybe we should all try to meet up once a year just like other disease suffers do!!!yeah not such a good time at the moment so writing this then going off to try to sleep. Kathy not a poem but what my son says to me when I say that I am not good enough mum for him. Kathy can you ask someone to look at your internet as it seems there is a problem and it is a lifeline as i know so well. Me and the joystick wheelchair had fun the other day got stuck in a doorway that refused to stretch the stubborn sod! Just stick a steering wheel on the wheelchair and I will be fine but a joy stick not a chance and i keep getting it on fast speed somehow and end up going around in circles like a rocket up my ass!!!!Oh they gave up on me years ago as now actually told it is killing me now, was given couple of years at most!! That is why site and you all so important to me. There is nothing worse than being told sorry but there is nothing more we can do for you so basically they are saying we are on scrap heap so leaving us to get on with it alone well that is how it feels to me, and what there is as pain relief either is enough to numb pain but at the level you are nearly comatose, they lower it and you become zombie or at my level I am on and you end up screaming each day but can recognise family SO what is the answer i do not know but they seriously need to reasearch into better pain relief and more importantly a cure or should I unselfishly say a way to stop adhesions accuring in surgery. Yep the black corner comes out and grabs me but do I fight him or go back to zombie or in comatose state a big question to answer, how much pain can I take and for how long?? sorry rambling on about self again and just rambling morphine brain zone kicking in well off to bed with me I think so will say bye for now as must rest as family coming later and want to be better than I am now love to you all lots of love kathy you are a good friend big hug Deb xxxx


Kathy scott 18 months ago

Goodmorning, its midnight,hello debbie and all fellow owls. Im just coming out of zombie, and got horrible headache, my dossett box have not put higher meds in, so taken lower ones..i don't know where i am. How is your three point turn, and reverse round corners? Your poor family and pets....watch out its speedy gonzalies! Im sorry debbie for calling such beauty words from your son a poem, its so much more, precious words, from a precious son.

i hope you managed to have a rest this afternoon, and re. This blasted a*tablet* i will get sorted, i type with x fingers!

my cats are meowing, demanding food, playing or just demanding!sending

my love dear deb, hello stephen, i hope all is ok? Not heard from you,my lifeline when i find this great site. Hello donna, how are you? Se nding you much love and peace my dear friends. Kathy xx


Kathy scott 18 months ago

Sorry to moan, fell asleep, gastritis just punched me in the chest, and woke me up with a wallop! drunk liquid peptac, took tabs? In gastritis box, anti sickness tabs, hot water bottle on chest. Its really horrible,pain comes in waves.Here we go...love kathy xx nite nite.


Stephen D Cox profile image

Stephen D Cox 18 months ago

Debbie, it's good to see you are keeping your sense of humour. I have an image in my head about you scooting around the house and banging into things. Humour is good but of course it doesn't make up for all the pain you are suffering. It's easy to feel hopeless. I too have been cut loose by my Doctors, they prefer not to speak about it, so I rarely bring it up.

Hello Kathy, I am still here. I don't have much to say these days I guess but my heart does go out to you both and others here as well. Donna, how are you keeping these days ?

I had a really rough night. Basically could not sleep due to pain. So I wondered the house all the while trying to be quiet so as not to wake my wife. The dogs kept me company off and on. I find it very comforting when they cuddle up next to me. They know something is wrong. We have a cat too but she is very me oriented. Like most cats I suppose.

Must get going. Need to lay down and try to sleep. Talk soon. Xo


debbie 18 months ago

Morning campers!! Great to see you Stephen!! Hey we love to hear whatever you have to say even a hello just so us girls in the Stephen fan club know you are ok!! hi Kathy you ok love? hi Donna are you alright I am always thinking of you all Well this should crack you all up the latest joy stick antics did a b-- wheely how i managed it heaven only knows but son was there at time and on floor after checking i am ok peeing himself laughing honestly I need a police escort safer how i was on hands and knees crawling. I am ok until all meds taken and then grab joy stick in hand. mind you the slightest touch and your off , imagine moving a pencil 1/ 8th of an inch to left or right and you have done half a circle even hubby said it is ultra sensitive to the touch. Well wheely done and then later jammed myself in none stretching stubborn doorway (need to get them widend ) at speed thrown from chair on floor ass in the air knickers showing and not the kinky ones that fifty shades of grey would have prefered but the comfie ones well as have shown the whole of medical society everything I have and what i have had for dinner I then proceded with out shame to just rub sore bits and scrambled back in and cussed the chair and door frame and got coffee as intended, was not the best after all that!!!(really did jolt my insides though it hurt should have wore the seat belt they provide yeah what is that telling you a full seat belt guys!) Have tried to sleep but like you all cannot because of pain and could not hide it from family, My dogs are a comfort to me and are extra clingy just before a bad stretch of pain hits me as if they see it coming. Pets also give love at night and all hours when needed they also need us to look after them so we have to get up to feed them etc To none suffers my humour is also good to hide things from people like another face also! well bye for now love to you all keep :) xx


Stephen D Cox profile image

Stephen D Cox 18 months ago

Hello Debbie,

I laughed picturing you do a wheel yin your chair. Is there not a way to change the sensitivity ? Perhaps not. Your adventures do give us a smile though but I don't want you to hurt yourself.

I would be interested to hear from you Debbie but also Kathy and Donna and anyone else for that matter. How does your spouse or partner deal with your adhesions ? So much of our time is spent in pain and it limits our ability to do anything normal. How do they deal with this ?

In my case, ( let me go first), my wife is incredibly understanding and caring. My adhesions and sickness has changed her. We don't do very much outside the house and I am often by myself in my chair when she is at home. I worry about this. Is she being honest with me or does she secretly wish to be free of all this.

I moderate a caregivers site with over 500 members. One thing I notice is how often caregivers will express their desire to be free of there burdens. Could be a spouse or a parent. Everything said on the site is private so members can let it all hang out. My dear wife always assures me all is well but I still worry. She is younger than me, attractive and could easily find someone new. In the end, there is nothing I can do about it. I try never to take her for granted. I do my best to do things for her.

What are your thoughts on this folks ?

Stephen


Kathy scott 18 months ago

Hi ya, just absolutely shattered, eve my eyelashes hurt! Debbie i cant get a picture out of my head, you in the middle of a pile of rubble, book in one hand, you know what book! The chair paddle in the other, your poor hubby just standing there, not fussed at all! Be careful, you remind me of weebles wobble but they don't fall down? You a proba ly too young to re member those toys! take care my dear friend, may i chat tomorrow the all nite parties must stop..if o ly...lots of love kath xx


Kathy scott 18 months ago

Hello donna, i ha vent seen you write for a couple of days. I sorry if you are in that dark place..

i could feel how devastated you were after your last appointment wjth your pain team. I think i suggested going to the g.p., iguess that the gp would stand by thepain team?

i sendyou healing and peace a d on closinv my eyes i will thi k of mydear friends.Comeon pain give donna a break. Hope to see you write soon, when you can love. Kath xx


Kathy scott 18 months ago

hello my friends.this is sooooo weird, i wrote last night about midnight, i wrote as your letters showed, i spoke to you debbie, donna, and about to answer stephen, sorry if you thought i was ignoring you stephen, when the hub box disappeared, i always go straight on our forum whenever i wake, or al thru the night, it didn't come up til just now! Its 7.05 sunday, my two letters were showing, but have now disappeared,so i don't know it you saw them, no idea. I will have a little doze. Love kathy xx


debbie 18 months ago

Hi gang!! hey Donna you ok love we are missing you here but totally know and understand how you are feeling, I get totally p-----d off with medics now lets be honest they don't know what to do with us but afraid to admit it!!

Hi Kathy lots of love honey weeble wobles was me when I was pregnant with each of my 4 kids as only 4ft10 babies had no where to go but out so you used to see my tummy coming around a corner before me! Me and the chair have an understanding now it will go where it wants and i shall just sit back and try to enjoy the ride ha ha

Hi Stephen thanks for bringing up the subject something we do need to discuss is the important issues affecting us all well I shall go second. I have asked hubby numerous times even asked if he wants a divorce to be free! But no he said he married me taking in all the marriage vows but more importantly he wants to be with me however life makes it possible. We werenever ones to go out evenings we used to enjoy the coast and sea fishing which he still does, goes with son at times but it is his time and a release valve putting all anger and frustration out in casting out bait and lead weight! when I was able I'd go and watch, we were content with our own company so that has helped a lot but the loneliness of not knowing other sufferers for over 30+ years was awful and this site a godsend. He says we feel isolated in the fact of not having help groups like other diseases and so not the recognition to everyone what we are going through together so medical people even look at you stupid I worry about him but he keeps saying well you would do the same for me but I do feel a problem a heavy load around his neck and then when I tell him that he says that I am beating myself up and looking at our lives in the same light as the negatives of my health, is that what I am doing? he also says to shut up because he loves looking after me after all the years I looked after him and children and now it is their turn to show how much they love me but it comes hard after being such a independent person to actually accept help so is that the problem? But because I love him I worry about him but is that not what he is doing with me, it all seems a vicious circle and confusing. Yes we get our bad times as do all he gets so angry about the lack of help he struggles working full time so as not to be called a sponger he is a very proud man but he phones all the time during the day but then he worries about doing that incase he wakes me, making sure I am ok as he says he really needs to be here fulltime and if I am honest I really do need him here as I have seriously hurt myself trying to get to the loo or not even been able to get out of bed to get there until he has got home! but do we become a problem and rely on the state, do we admit we are backed up against a wall and struggling now as I am getting so much worse and mobilty so bad with the MS it is the admitting and knowing that honestly we are not coping anymore by ourselves

this is what he is finding so hard to deal with mentally He really needs to know your site please!!! The financial side to it is a worry when does he say I cannot work anymore due to it doing my head in unable to concentrate at work worrying about Deb has she hurt herself or what am I going to find when I get home. He has said he pauses before he puts his key in the door frightened what he will find, that is no way for that poor man to live each day! But he nor me wants to be labelled lazy when we are not I worked from school up until i collapsed, neither has never worked and always paid into the system but never thought we would need it. What the answer to it all is i do not know

Sorry about the ramble but started and it just poured out of me maybe I needed to say it to someone so please forgive me Deb xxxxxx


Stephen D Cox profile image

Stephen D Cox 18 months ago

Kathy,

I do not think nor have I thought you might be ignoring me. So put that thought out of your mind right now.

Stephen

Xo


Stephen D Cox profile image

Stephen D Cox 18 months ago

Hi Debbie,

If your husband wants to join Caregivers, ask him to go too : https://www.facebook.com/groups/caregiversupportco...

Your husband needs to have a Facebook account, otherwise he won't be able to find this site. Let me know if he has any problems. If he is the kind of guy comfortable with on line groups, he will find a great deal of comfort here.


Stephen D Cox profile image

Stephen D Cox 18 months ago

Hi everyone,

I am going to try and set up a help,community for adhesions. Give me some time to try and figure this out. I will let you know. Thx


debbie 18 months ago

hi Stephen sorry about the ramble do not know where it came from! but who do I talk to and like wise who does he talk to about worries feelings we do not want to tell each other incase of hurting them. thank you so much for site info will tell him and I will hope he goes as that lovely man needs support for all he does for me. love debxx


debbie 18 months ago

Stephen to offer to do that honestly you are such a wonderful caring man you do so much for others and your wife is a lucky lady maybe we should believe out partners and accept we are loved and lucky and does love have a age barrier Stephen? because I do not believe it has, love is something that just luckily happens yes my hubby has changed also but then do we not change to adapt to all changes in life do we also change as the years of marriage grow. hubby says you just become comfy together like an old pair of slippers (cheeky sod) Yes I know we cannot be who we want to with them physically in all ways but it does not stop the words of love and gratitude and the depth of what we feel for them from coming out of our mouths. I tell my hubby everyday that I love him and I will do so until I die because we do not know unless we are told do we. I love you all for being there for me!!! xxx :-) (smiley face now has nose, trying different designs)


Donna 18 months ago

Hi all, thank all for caring it really means a lot I'm not in a good place at the moment the pain is as you all know unbearable and the withdrawal is hurting

Stephen thank you for talking about how are partners feel. My husband has been amazing the way he takes care of me I feel so much guilt everyday cause he does so much he works very hard and then comes home cooks does housework I know he is tired we have to children one 16 and one 13 they help a bit. He broke down at my last appointment with the pain team he has never really cried in front of me he said he just doesn't know how to help me he hates that he can't take the pain away.the worst thing is I have slept well maybe not slept on the sofa for at least two years we both hate not being able to cuddle and other things couples do but his has never complained about it never made me feel bad but I do I'm always apologising and saying I'm a crap wife one of the reasons I don't go to bed is I can't lay flat as pulls on my stomach so my husband got me an adjustable bed I am now trying to go to bed but as it is now 3am it's not going that well. He tells me everyday that he loves me but we do argue more now than we ever have which we both hate but things are so more stressful now. Sorry for going on and if it doesn't make any sense cause I don't know what I'm going on about half the time. Sending you all my love and friendship


Stephen D Cox profile image

Stephen D Cox 18 months ago

Hi Debbie, Donna and Kathy. What is clear to me is your husbands and loved ones are supporting you to the best of their ability. Mine too. We are very fortunate. As I have told you, I moderate on a few rare disease sites. It's difficult because I feel so lousy , however, it's rewarding. One thing I get to see more than I would like is how certain spouses are not supportive and in fact, are mean and cruel. It is shocking. I feel so bad for these individuals. They are trapped in a terrible situation. We are so fortunate. But for the grace of God go I.

So thank you for sharing your stories. It is very hard for the spouses. They want to solve our pain issues. It's important to know that they are feeling a lot of stress. It's common for caregivers/ spouses to get physically sick because of it. We need to encourage them to take breaks and do things that make them happy.

Donna it is good to hear from you. I realize you are in a bad place but please know, we care. We are all in this battle together.

I am working on trying to start a new site where we can get support and find additional folks with the same issues. Being able to share with others that are in the same boat is very helpful. Please let me know, if this interests all of you.

I should be able to announce something this week.

Take care,

Stephen

Xo


Kathy scott 18 months ago

hello my dear friends. How are you, i have been reading your letters. We all seem to mirror each others lives., all these feelings we have and had we had to keep them from our husbands, wifes, families. I too miss being a proper wife,friend,and the closeness a loving couple feel. I too sleep o the settee,propt up,can,t lie down,orlay on sides, there the closeness of a warm partner,or a loving arm across you. Gone. Stephen, this is a little late, but i wanted to say, you have a lovely wife, who im sure misses you, like my husband misses me, but bless them they are still with us, we say, for richer and poorer in sickness and in health, we did not sign up for the sickness, but here we are, very blessed.take care my dear friends, lots of love,healing kathy xx


Kathy scott 18 months ago

Can i share this with you. I was watching a programme showing all motown songs, my era, i can,t listen to songs asit brings back too many memories, dancing, hving fun with the girls, we love, music,we loved dancing when the girls were young, top of the pops! but i did try, to listen just now, without getting upset, my youngest daughter was here with her partner, we were chatting, my daughter was jigging! It caught up with me, i had to leave the room and sobbed, i hate you adhesions you took me away and left an empty shell. X kathyx sorryx


Donna 18 months ago

Hi Kathy I can completely understand me and my daughter loved to dance around the house together it was the best thing and now I can't even go upstairs to her bedroom it's just not fair adhesions took everything from us and taken us from being the people we were. So please don't say sorry we all understand. Sending you my love and friendship.


debbie 18 months ago

Hi guys anyone home? Its 4.30am and have been up all night with 2 bonfires burning ferociously in kidneys and liver. Whoa major painful, white hot pokers! A brilliant red dawn sky to match my insides! Stephen if you can manage to keep the gang together and we can support others go for it but do not over do things and make yourself ill!!Only worried friend about you!

Hi Kathy those were the days being able to jig around is just a distant memory and yes grew up with motown playing,hairbrush microphones!Hey shall I try jigging in the chair, watch out dogs!

Donna you are so so right I hate them and the air turns a distinct shade of blue these days they have taken away life, the outside world, my hubbies life, all I have now is meds and four walls viewing life through a double glazed bedroom window. Cannot get comfy, every position is painful and I think that the only times I get sleep these days is when my body literately shuts down as it cannot keep going. But to lay cuddling in bed with hubby oh to sleep in his arms again I cry so much missing them as he must just the warmth and love in that cuddle it breaks my heart as it does us all at what some take for granted and us just dream of having again.

Can I put something to you guys I know I have infection now it is raging (ringing dr as soon as open) but did not know until now felt unwell but that is normal with everything I got, It is a serious problem for us with the meds we are all on how do we know about infections or more serious problems pain killers masking signs until like now it has got a good grip and will take longer and harder to clear or if we get a serious problem found later and so then only thing to sort problem is god forbid surgery! Do we need a mot regularly at drs to spot things before they get out of hand ie monthly urine tests (just a dip stick could be done at home by us) for infections in kidneys bladder etc which I know because mine is so stuck I am prone too? Do you get what I am trying to say? Lots of Love to you all xx


Kathy scott 18 months ago

Hello all my dear friends..how are you..no let me guess !!

thank you donna for your letter, i was so upset when i posted my last note...thank you i hope you are having some peace.xx

stephen, hello, i have ment to lrt you know that a new/different site would begood, this forum was my nugget of gold,so happy to have fou d you all. But, please as debbie said, take care, do not make yourself poorly, but i admire you for showing others,like me, who was so lonely, here we are to lean on, we might fall down! Butwe will do our best, falls and all.im going to send this.will be ack xxkathyxx


Kathy scott 18 months ago

Hi me back again, i thought if i did this in *bits* it my show up. Page 2. Ha ha.

debbie, i agree, with you regarding, g.p. and other health problems. My surgery, i feel, that i am just *adhesions* any other problems go by the way. I too have probs. With bladder, i have tried to buy the urine sticks, without much luck, although i do buy, my diabetic strips,? I have been *lost* with the increase of pregabalin,ishould have eased my way up, but jumped sfraight with the high dose, i rang the gp, who was very kind, as they all are really, jts just me and adhesions, that's the prob. He told what to do but i am really doped up. I will close now, my love, support,and sending healing thoughts to all, my dear friendx kathy xx

,


debbie 18 months ago

http://www.youreable.com/ hey gang just found this site!!!!!


Kathy scott 18 months ago

Hi its me, debbie just gone on tonew site, great site good honest advice scared me though. Take care. Lots of love kathy xx


Kathy scott 18 months ago

Hi its me i cant sleep, the cats snoring, iwish i was. But i cant breath, im layin g here with nose strip, not a good sight so i can breath a little. Im going to hospital nxtweek for pre assessment, my daughter asked, can you get adhesions in your face. Hell what a thought pain has been gnawi ng for all days hours...watching clock for nxt meds.nite nite love kathy xx


debbie 18 months ago

Ki Kathy still there? up again together in pain same as you watching clock for meds, (morphine etc next to me ready) having a real s---- time at the moment everything is burning like wildfire and screwing up and trying to do leapfrog at the same time so fed up with this 24/7 after all these years strength is going to fight it. The pain is so tiring but to painful to sleep so just seem to live in constant pain knackered! Well all I can say is I have them from my neck to my ass! just the rest to go ha ha!


debbie 18 months ago

Kathy and everyone I do not know how you feel but the night is worse as you are in pain cannot sleep (everyone including animals snoring in the house) and you are trying to be quiet! Do you have the tv on well that will probably disturb them etc etc but I cannot sleep so lay sit stand on head with the pain biting tongue trying not to moan and scream to loudly do I go in the shed but then would disturb the wildlife and neighbours would call the police thinking someone was in trouble! well still watching the damn clock, shook it as did not seem to be going round very fast but checked others and yeah it is working but time is having a slow day its just me impatient for pain relief that in the end isn't really going to do much! tonights a real bummer! sorry had to say it love to you all deb x


debbie 18 months ago

Morning campers how is everyone, well I managed a whopping 1 1/2 hrs sleep!! So knackered eyelids feel like they are on strike trying to blink over gravel in-bedded eyes, still got the shakes due to the pain, meds not working. But you all have got to know my sense of humour, so I have come up with a bumper sticker for the chair - cant drive, don't smoke, don't drink but do drugs! what do you think? got stuck in door again really they are wide enough it is just me not working out when to turn so keep going sideways to early! But have not shown knickers this week, but give it time, also dog has all four paws intact but unsure about nerves!

Can I ask everyone do you do the same as me even though I may need help or something done etc I don't ask hubby or anyone as I feel I am enough trouble as it is. Well hope to speak later all my love to all Debbie xxx


debbie 18 months ago

another question to all - I find the weekends really make me feel more guilty as others are going out doing family things etc but we cannot and so it makes me feel that I am stopping hubby etc doing things that others are for instance we used to sometimes go out for sunday lunch and then a roam around somewhere and stop for a coffee , do weekends feel worse for you all?


Kathy scott 18 months ago

Hi, its me, here we all are doing and saying *im fine*. Like you debbie i was fiercely independent, this monster has left me next to useless, my hubby hands out my meds like e nurse, im not allowed near the meds cupboard, cos i have got it wrong.

I do this in 2! Love kathxx


Kathy scott 18 months ago

Me again, debbie i understand that watching the world thru the wi dow is so frustrating, and not going out.

my youngest daughter gets married next month, i haven't been shopping to see her dress, venue, i hear what's going on thru her,or my other two daughters. I have missed other important family gatherings, I live my life listeni g to others, i don,t even have a

passport. It seems so u nfair. When did we put our hands up for all this? Take care,im going to try and get some sleep, im knackered, we should call outselves the knackered adhesions patients! Lots of love kath xx


Donna 18 months ago

Hi all I really don't know what to do with myself at the moment all the pain team seem to be doing is lowering my morphine but they are not giving me anything else to help with the pain they have been lowering my MST slow release morphine and now they only want me to have one bottle of oral morph a month I just want some relief .

Kathy it must be so hard for you to miss out on your daughters wedding plans. The things that these evil adeshions take from us it's just not fair xxx


debbie 18 months ago

Hi Donna hey honey you still there and want to chat? I am here clock watching for meds that are not working but hey would not like to try without if you know what i mean and yep being a zombie is less pain but do not know the world around us but they lower it and bang pain central I am still working out what is best as myself I do not know how much more of this pain I can take as it is knackering and really unbearable. love deb xx


Kathy scott 18 months ago

Hello donna so good to hear from you. Im so very sorry to read that you are in a sad place, i have just gone back to what i sent about these stronger meds im on, sorry i know i go on, but there not there,anyway, donna, i cant understand the lowering of your medication, although, when i saw you meds, you are an amazing sttong lady to cope with your meds. I do waffle on and ment to say this at the beginning. My gp woukd not increase my morphine,i saw her 2 wks ago, so we left it as is plus oromorph. She did however, increase my pregabalin, i used to be on 2 x 100 mg per day, but it is nowvraised to 600mg per day, i did get the tablets all mixed up, and the gp rang me to explain what to do. I have been totally zonked out, but i have had the *edge* taken off in my pelvis, other bits not so, its still roaring, that's why i awake, hotwater bottles etc.,would this tabletbe any help to you? This is prescribed for epilepsy,anxiety and pain. Perhaps this would not be strong enough for you my dear friend., i hope a little info. On my meds, my help. Thank you so much for your kind words donna, i laugh and take it in good part, but inside, well you know. My youngest is the last to leave the nest,its very sad, but there it is.Lots of love,peace and my healing wishes.kathyxx


debbie 18 months ago

Hi Kathy wrote back to you and it has not appeared it keeps happening!well here goes again! well so many family things I have missed out on to upsetting to list. I feel so much for you love but just rest and try to get the energy etc for the big day and go to dr's and say you have her wedding and you need their help to enable you to be there in the form of pain relief etc and what can they do extra for that day. I was told I could have done that after a wedding I missed! just for that extra meds but not all the time but ended up on them anyway it is worth a try love anything to help you on the day. I just wish there was a way I could give you my phone number safely and then we could chat. love and hugs friend debs xxx


debbie 18 months ago

hi girls I am on Gabapentin teva 2x 600mg 3 times daily this is for the nerve damage (used for other things also) caused by the adhesions given this due to the latest findings on adhesions this helps a lot this enabled the drop in morphine the pain I am in at the moment is worse though due to infection and flare up of cysts on liver and adrenal glands but like I said my doctor checks all the time for latest findings she is lovely and supportive it is the others that are not. Hey girls going to admit to you what a lazy so and so I am due to tummy so sensitive to anything I 99% of time stay in pj's as more comfy as lose around tummy and groin (yeah even there between legs are adhesions) me and my pj's are best friends totally peed at the moment though favourtite pair in wash wish I had brought a couple of pairs of them at the time. Love and hugs to you both your friend debs xx


debbie 18 months ago

Hi Kathy we keep meeting each night it is no way to live is it hubby and dogs are snoring and I am like you both so my heart goes out to you both tonight and always there has to be a answer somewhere for us they are making such headways in other areas how about them using some energy to help us as we are living in a nightmare of pain torture, I would love to have one day without pain and just the relief and sleep a whole night and not a half hour or odd hour here and there it would so help to recharge batteries to cope with it. thank you for the info on your meds Kathy going to show dr to see if any good for me I am so desperate I will try anything, and yeah tried sleeping tablets pain goes through those and wakes me! love and hugs Deb xxx

DONNA are you ok darling we are both here for you xx


Kathy scott, 17 months ago

Me again, re. Wedding belles, its been difficult, my "stomach"swells when it wants,due Gastritus, adhesions, nausea ipromise i look 7 months pregnant, i could cry, i bave to wear,cardigans or large tops,but then i look weird i have skinny legs


debbie 17 months ago

Hi Kathy that is why my pjamas are the best for me as mine goes up and down I can have some jeans on one minute and they are baggy then next minute to tight and as the bed is most comfy for me compared to sitting which is so painful in pelvic area my pj's are the best. but yeah I know where you are coming from what to wear when you go out end of the day we want to look nice but what size is our waist going to be throughout time out? elastic waists and loose tops oh the days when we wore fitted clothes! I could cry but over the years I think I have cried myself out and just get depressed looking at clothes so just head for the pj's and go home end of the day who do I see - yeah no-one so why bother. Must work out a way we can all talk Kathy when we talk we are just saying what the other one is going through it is like describing what we see in a mirror. love hugs and healing to you dear friend debbie xxx


Donna 17 months ago

Thank you both for your kind words and advice but they won't let me try any over medication until I'm off the morphine. I also live in my p.js I have put on so much weight and my body is so swollen I can't wear any nice shoes I look so pregnant it makes me cry all the time. I go through so many pairs of p.js due to falling asleep with a cup of very hot coffee that ends up all over me I have ruined my sofa with coffe Stains so now drink out of a plastic cup with lid just like a child sorry I know I do go on.

Here to another week of the same old rubbish


Kathy scott 17 months ago

Morning, just been jerked out of sleep,postman,hubby an swered anyway but awake now...oh to sleep.hello my frie nds. Ha, there was more to my letter, i did say i ordered my dress from catalogue,its blue,deep blue falls from bustline, low pockets,soifmy stomache swells, as ilook8 months pregnant when itdoes swell, this dress will i hope hide it. I thought pink accessories,although, i have never been a pinky girl, blue or mauve,being healing colours.


debbie 17 months ago

Hey hang on a sect Donna look at me always rambling away moaning but I told my hubby about it and he says it is because of years having no one that could understand and then when I have found someone that does it is spilling out of me and the same applies to us all. Isn't it a real pain when it is your favourite pj's and then in the wash and just throw a sheet over the sofa hell that is replaceable you are not hell this is taking so long to type as shaking lets just say started as soon as yours appeared! Trust me once you come down more off the morphine and side effects start to go you will be back to normal mug! and you will get better as time goes as far as the withdrawals so there is light at the end of the tunnel as far as that goes, I am here if you need me so please do not forget I have been there and got the t shirt but sadly it did not come with bottoms ha ha I have put on weight due to the steroids I have to take for other ailments and what exercise do we all get bar shaking with the pain. Yep get totally upset about it all the time everytime I look in mirror I look haggard due to pain, grey or yellow depending on if liver working or not that day and look pregnant, but like I said I do not see anyone. that is the good thing here isn't it you cannot see if my hair is brushed etc love and hugs Deb xx Yeah same rubbish meds and chatting to each other all day on the internet instead of the dusting and hoovering we can no longer physically do um is that bad?


Kathy scott 17 months ago

Page 2. Debbie, like you, i get stooped over as if im being pulled down, as the adhesions strangle mybladder, then a trip to hosp. For bladder stretched. My steps little tiny steps. Donna, i too likeyou fall sleep,tea all down me, chair, hubby just takes the cup and i strip off in shower,im so sorry what you all go thru, so sorry you suffer so much. Stephen, i cant thank you enough for this forum.

i am hoping i can get to my daughters wedding, this seems trivia,sorry. Sending you lots of love kathy xx here we go fingers x


debbie 17 months ago

Hi Kathy nothing you say is trivia, dress sounds fantastic what a find! Pink would be lovely, I have seen some lovely ivory embroidered accessories around, the embroidery having all colours so would then go with any future outfit? Say Ivory shoes with beading on or embroidery debenhams have some great stuff at the moment is this any help kathy? love and hugs debx


Debbie 17 months ago

Kathy I do not know if you have one but if you want to use a wheelchair on the day just to rest in instead of standing non stop you can hire or even dr's can help for the day I believe British red cross hire and age concern can also help with this. Better than getting tired or hurting yourself love. I would let you borrow mine if you were closer. love debx


Kathy scott 17 months ago

Hi its me, thank you for offering your wheelchair, debbie and all the infomation. I do have a little mobility scooter, cant tell you the look you get from people, the same as when younare in a wheelchair, people get angry, and dont hold back, the things people have said to me. But, you do get the kind people too, helping you in supermarkets. Ill go on debenhams web site, thank you, my daughter popped in today so i got the update on the big day.

i am still so zonked out....

donna, i am concerned for you, how can i help you, i know that sounds silly, but i want to be able to say something to help you.please take my hugs,love and healing wishes. Lots of love kathy xx pressing button now fingers x.


Kathy s cott 17 months ago

Hi its me, just woke up cat patting face...thats a little of the night gone. I always read our previous post's, i am concerned stephen,are you ok? I know thats a silly question, but i know you understand! I send you much healing wishes, both to you and your good lady wife, lots of love kathy x


Debbie 17 months ago

Morning all, (Serious bit later to ask you guys Might interest you Stephen) how is everyone, just been woke up by double glazed salesman with finger glued to doorbell, thick man he was stood in front of double glazed door and passed a double glazed window. Really angry as first sleep in 3 days and had only had 3/4 hr and now been jolted stirred everything up!!No chance in hell of going back to sleep and not due meds now for 3hrs! I am waiting for a sticker from the council that you put on your door against cold callers it is the council and police working together have you guys heard about them - free! Friend has one has has since not had one salesman knock!

This is something that I have been looking into due to my arthritis and hubby has it also and that I have noticed pain has been really bad when also arthritis is moaning so found this:-

" How's your weather? We have and will continue to have, high humidity, heat, storms, and rain. That means the barometric pressure is falling....and my joints are terrible. Dr. James Fant (University Specialty Clinics) stated "if the barometric pressure is decreased, then that would allow the inflamed tissue to swell more, simply because there is less atmospheric pressure holding the tissue back. If there are nerves in that tissue, then those nerves would be stimulated by that swelling and that would translate into pain."

Is there a connection? Our adhesions are connective tissue, so is this tissue which is always inflamed from being pulled acting the same to air pressure.I know that temperature plays a part and the seasons can I ask you guys if you think this is a stupid thought and would really like your opinions. Like I have said before it seems where they cannot do anything for us they have given up so I am trying to find something and answers why pain so bad at times etc when all I have done is the same sat on bed! love to you all and sending hugs debs xx


Stephen D Cox profile image

Stephen D Cox 17 months ago

Kathy, thank you so much.


debbie 17 months ago

Hi Stephen how have you been love or is that a stupid question? So missed you and the whole of your fan club missed you hopping all is well and your wife also give her my love. Oh and must not forget that hubby said to pass on his love and understanding to your wife. Hope to speak later and your thoughts to my idea take care friend, love knackered debs xx


debbie 17 months ago

Sorry but knackered because of being woke up, in pain, the sun is shining its such a beautiful warm day and cannot even get out of house to sit in garden, trapped! What a sh---y life its not fair is it to much to ask for someone to be here to help me sit in the garden in the sun instead of how I am living? Sorry just down as tired Debx


deb 17 months ago

I am going to take my meds and as crying now going to put a film on and see if it is boring enough to fall asleep so hopefully speak later to you all love dx


Kathy scott 17 months ago

Hello deb its me, im shaking so please excuse wording and writinim so sorry you are upset, please dont cry, i cried this afternoon, we had better build an ark! My hugs, handholding,love to you, my dear friend. Im battling with zonked out hubby scared i can tell by his face, our angels,i hope you are not offended, they hold us gently.lots of love kathy xx


Donna 17 months ago

Hi, I want to thank Debbie and kathy from the bottom of my heart for all your advice and friendship your both always here when I'm feeling lonely and in so much pain. So thank you both for all your kind words. XXX


Kathy scott 17 months ago

Hi its me, another day, my dear friends to get thru. Debbie i hope you have some sleep, donna,thank you for your kind words, please beep me, whenever, im here, to listen, to waffle on......im good at waffle, ive always been called chatty kathy, even as a kid!, hello stephen hope your days are being kind to you.will send this and write again,as been to hospital today, just to tell you whats happened. Love kathy.xx


debbie 17 months ago

Hi friends, (well that is what we all are to each other isn't it?) how are you all, well whoopee had a massive 2 hrs sleep! Still knackered. Sorry about yesterday Kathy and you could never offend me love, and as far as angels I have them all around the house. The ark, well start building shall we. Pain is awful today painkillers not touching it, you know the feeling guys, brain fuzzy totally zonked on morphine but in agony that has you writhing and rolling with it. I just wanted to check you were all ok and hopefully take my mind somewhere else Hubby is worried as I have high temperature and prone to sepsis and worried it is not just bad infection/cyst flare up but something more hidden going wrong I just feel so unwell at the moment with it but will wait and see a bit longer as really hate the hospital and as you all know when you are in there you might drop off to sleep amid the noise and they wake you up to take your blood pressure and they say it is high well of course it is high firstly you have just been woke up and the pain raises your blood pressure and then they say that you really should get some sleep, honestly better at home as long as possible.

Can I also ask how you all get through the days what do you do to keep yourselves occupied even though in pain and have you any hobbies. Myself, at the moment I am hand piecing a quilt all in batik fabrics as quilt to take to the beach for my son and girlfriend have made a total of about 3,500 hexagons and now joining them to look like flowers it looks very tropical, I have always made quilts, crocheted, knitted etc it helps get through the pain counting stitches. I'm waffling totally not with it. Well hopefully have a chat later, and Donna thank you for your very kind words but honestly I am here for all of you if you need me as I know I need you all, I think we need each other with what we are going through daily, that is why this site is a godsend. Stephen please let me know you are ok as I really worry about you and just hope that you are not over doing things. love and hugs to you all Debbie xx


Kathy scott 17 months ago

Hi its me, debbie, so sorry you are in a bad place, i always feel so helpless, but this illness is, isnt it, yes we take the drugs and are very grateful for them, but its still there that awful gnawing pain...i just wish for you, as the clock ticks, it will tick away the pain, and that you fall asleep...for some relief. As for any distractions, i pin, and watch our forum, and try and read i say try, cos i always fall asleep, a bit boring i suppose. Your quilting must look lovely, a labour of love. I will send this, be back love kathyx


Kathy scott 17 months ago

Me, debbie, i had to smile when you sent, just two lines you were upset and putting on a film, i do that, ihopefully just get passed who is in the film, then fall asleep.

can i share? I went to hospital today for pre.assessment for op on my broken nose, as were going thru questions, swabs, then i had a ecg, i do take tablet for irregular heart beat. I heard the dr. Ask for the anesthetis, whe the anesthetis saw the ecg she said No, not doing op on nose i should go straightto cardiologist, but, can no longer do,due to the cha ges in legislation, the dr. Said she would ring my gp, get me to them quick, they refer me again, quick, their was talk of admitting me, i was knocked side ways, so here i am, waiting, we aretalking heart pacer? My mum bless her had heart trouble angina, then a triple heart op. And diabetes, so there is my diabetes, and now progressing heart probs. Told two daughters, but not my daughter who is gettibg married. I haveto say, the nurses doctors,anesthetis, were superb, i was looked after, and the ansethetis was lovely. Oh im tired, so tired, cant get head round today, oh they told me to go to a and e, if i need them. I really hope this is posted. Nite nite love kathyx


Donna 17 months ago

Kathy Im so sorry I wish I could say something to make everything ok for you but sometimes life can be so unfair I can imagine your head has been all,over the place today I know it doesn't help you but I'm thinking of you and wishing all the best for you I hope you can get some rest tonight xxx


Kathy scott 17 months ago

Hello donna, how are you? , better days? I do wish peace for you donna, its kind ov you to write. Im sorry its taken a while to answer you but i have, having trouble getting my head round this heart thing. I am, well i like to think i am,pretty tough, but this news has dented me a bit. The gp rang today, i am seeing the doc. Next friday, this is suppised to be 'urgent', the doctor has got to refer me back to the cardiologist! The anesthetis wanted to do that on wednesday, but not allowed to do that. The main concerns is more adhesions, understandable i guess. Other docs. Have refused me any surgery due to adhesions, our old adversary! I have gone on about me, donna, but how are you really? I write, moan, chat, moan, again, that my letters arn,t shown, but in all gbat donna, i wish you peace, no pain, sleep, take care,my dear friend, kathy x☺


Donna 17 months ago

Hi kathy, I can't stop thinking of you and how so unfair things are I'm so sorry you are having to go through even more. Adhesions are just so cruel not only do they give us so much pain they can stop us getting help for other things I really hope they can sort this for you I can't imagine what you are going through. I hope you can get some sleep and peace and for all this to be sorted quickly for you. The pain team has told me I'm only aloud one bottle of morphine a month I just don't know what to do with myself most of the time and once they get me off morphine I don't know what they are going to give me for the pain. Take care all my love and friendship. Xxx


Kathy scott 17 months ago

Hello Donna, so good to hear from you, thank you for caring, putting on a smiley face as we do, but inside like a jelly!, a bit unhappy about it all, and i guess, feel a bit sorry for myself. Im sorry that you are in turmoil, i can feel all your pain and questions you want to ask the doctors. How do they send a patient away, with, well we will reduce your morphine, they have not told you the replacement? But what do you do at the meantime? All you can see is this one bottle of morphine to last you, i would feel exactly the same, scared, you are so brave, i admire you greatly, i do know how you feel, and i promise i do. This illness is a monster. Can you call your pain tem and ask them for advice? I know that doesn,t help the pain right now, but perhaps that will answer some questions. I so wish i could take this pain away, i am sending you so many healing wishes..love and many hugs. Thank you for caring, i have found friends in such a dark place, i am so lucky. I do hope this is shown, fingers x it doesn,t disappear love kathy


Kathy scott. 17 months ago

Hello donna me again, sigh some of my text is missing? How are you this morning, didyou manage to have any sleep. Take care donna, i hope you can get some answers, and some pain relief. Lots of love kathy x


Donna 17 months ago

Morning kathy it really is so good to have found friends that truly understand how your feeling I'm so thankful to have found you. I have asked for a meeting with my pain team and my G.P so I can get some answers as I'm loosing my mind and any strength I had left. I have all my fingers crossed for you i hope you get some peace from all your worries. Lots of healing thoughts and friendship. Xxx


Kathy scott 17 months ago

Morning, my friends, or night owls, listening to birds singing, gastritus woke me, i hope a better day is today for all, sorry a bit low today, got upset and angry with life, hey ho, chest pains, honestly, i have been having this pain for sometime, just put it down to meds, oh dear. Seeing gp this week, donna, hope your meeting is soon with gp. And pain team. Nite nite, lots of love kathyx


deb 17 months ago

Hi Kathy really ill at the moment but I just wanted to say that I am thinking of you and sending all my love and a huge hug Hi Donna thinking of you, take care hope all goes well with GP Stephen are you ok? sorry it is short but taking too much effort and energy I have not got.D xx


Kathy scott 17 months ago

debbie, so sorry, you arefeeling so poorly, you take care, take meds, and rest, with every mile from suffolk to you, love, healing,hugs,and quietly holding hands to give you strength, my thoughts are with you dear friend. Love kathyxx


debbie 17 months ago

hi kathy up due to usual how are you? I truly understand as you know how it does your head in at the thought of coping with another serious disease. My dad and all his side of the family have heart problems, hereditary so I have worries, sorry not been here for you but infection got so bad. will try to be here more for you dear friend but still suffering at the moment badly xxx Debbie sending a big hug, healing and to just say always thinking of you xxx


Kathy scott 17 months ago

Hello debbie, im sorry, you must be in so much pain,the anti biotics not helping with this infection? Not to bleet on about myself, but it took, three lots of different meds, to knock out my bladder/kidney infection, as you know the body gets used to all these tabs, so the gp has to up the strength, i had my real bad bout all over christmas, i think i smiled not stop, raging temp,no wonder im loopy!

I know that this was nothing compared to how you are feeling,please dont worry im fine, you get well, stronger, im listening to the birds singing, three hot water bottles, guess where placed!! sending you much love and smiles, your loopy friend kathyxx


Kathy scott 17 months ago

Hello debbie, me again, i fine really, but my pain is throbbing, isnt this just ...well no words to describe, sorry just had to tell. This page keeps twisting round, its so weird, i put little pussy cat and dog faces on at the end of my letters, but they never appear? Im going to try and sleep, you too, take care love kathyxx


Stephen D Cox profile image

Stephen D Cox 17 months ago

Hi folks,

So sorry for nor not be in touch. Simply too much pain right now. Take care, bless you you all.


Kathy scott 17 months ago

Stephen, im so sorry you must be feeling so poorly, how i wish i could say the right words to help, I am sending you so much healing,and much love to get stronger. Please pain, let go...my love to you and your lovely wife. Kathyxx


debbie 17 months ago

Hi friends hell we are all in a bad way at the moment just shows though what we all have to cope with without help, I do not know what to do with myself due to amount of pain I am in at the moment my brain has got to the stage it cannot cope with pain messages I think. I actually hit my head on floor a couple of times last night to take pain elsewhere did not work just headache and bruise. How are we to cope? Sorry for moaning but I know how hard I am finding it to cope, black corner back, so I can understand your pain and what you are going through and so my feelings for all my friends here is true and so much love is sent to you all, it is truly a blessing to have you and know that at least I have you that understands as how can you put this pain into words to describe it, there are no words. Stephen, Kathy, Donna all my love big hugs from me to you always god bless deb xx Really fed up though with losing what I write like you Kathy!!

I have found a way to describe to others what I am like I tell them to watch a part of a film it is the Twilight films the breaking dawn part 1 where she is injected with venom she is perfectly still due to morphine but the film shows flashes of her screaming, pulling hair out etc but no one can see that it is showing what she is feeling on the inside well that is us I am bella swan at that stage not screaming on the outside but screaming on the inside all the time. Dxx


Kathy scott 17 months ago

Hello debbie, i must have fell asleep, well, passed out more like, after i wrote to Stephen. How do you write pain, i dont know the twilight films but i will watch them, my hubby loves these films he will know instantly. I come to a point, i cant cry anymore, but tears fall, the pain is screaming at me, but i step away from it, i leave my body, and wait for the clock to tick bye, i usually have a temperature, i have rang samaritans, stood by the meds cupboard, and looked to sellf harm, took too many tabs at the wrong time, but still the pain is still there, throbbing away, the last time i was at the knife draw and my daughter walked in chatting away..she never guess, thank goodness, theres many things debbie, but in the cold lite of day it sounds silly and stupid, but its sad, very sad.

I am so very sorry the pain you are in, i would share with you, just to give you a little peace, we are all in a very dark place, together,but we will get strong again, i know we will, love to you all my very very dear friends. Love kathyx


debbie 17 months ago

Hi Kathy, I am thinking of you Kathy meeting the specialists about your heart but you tell them from me, any pains or problems it is only because your heart is stretching to hold all the extra love in it, as it is a heart built by angels! all my love, big hug, god bless dear friend Debbie xx


Kathy scott 17 months ago

Debbie, you are so very kind,when i read your lovely words, i get used to being tough, strong,everything is ok, im not waving any flags, but i have got hard, where health is., i guess we all have. Thank you for reminding me its ok to hve a kind word said and hold it. Im in bed just shattered and all that goes with it. The dr said another heart trace next week, and see consultant. He took my pulse, and said 'thats not right" looking back on my 2011heart records he said things have changed somewhat.the fall, my nose, and my constant loss of balance is due to heart, not or as well meds. I couldn't have a lovlier thought as being wrapped by angels wings. Thank you my dear friend. Lots of love and healing your friend.kathy xx nite nite.love and much healing donna and stephen, together we are stronger. Xx


Kathy scott 17 months ago

Hello debbie, just wrote to you,its gone,im so upset..bless you for your kind words. I m so upset. Nite nite love kathy xx


Kathy scott 17 months ago

Morning, i have just woken up, goodness its been a long night. Love, healing and blessings to you, my very brave friends, you make me humble, i am so grateful you are there for me, thank you so much. Love kathy xxx


debbie 17 months ago

Hi Kathy sorry not got back until now but you know how I am at the moment but I am always thinking of you and will be with you in the love I send while you see all the specialists dear friend I am there holding your hand and my arm around you hugging you. We may all get hard over medical matters Kathy but its love, friendship, hugs and kind words though that get us through the problems, its the support that makes us able to have the strength to fight or just to cope with the pain for example we go through 24/7. Also as everyone who knows me says I am totally gooey inside! So dearest friend let that angel made heart accept all the love your friends here send and let it keep stretching to take it. all my love and hugs your friend Debs x

Hi Donna and Stephen sending love and hugs hoping the pain eases and that you can have a gap to draw breath all my love Debs x


Kathy scott 17 months ago

Hello, my dear friends, been thinking of you, i hope that doesn't mean the worst of pain. Isn't this weather awful, layi g with hot water bottles on you doesn't help. I have my daughters wedding on saturday, that has come round so quickly. Can i share, saw gp last week, he is surprised that things have deteriorated quite a lot, another ecg tomorrow, i dont understand, one minute straight to a and e., then.....oh well. With everything else, not good at mintue, trying to be strong for saturday. Im going to bed, lots of love, healing,and many many hugs. Nite nite kathy xx


Kathyscott 17 months ago

Hello its me, how are you, re.read my last letter, sorry, i ment ' not hearing ftom you' you are poorly, love healing many hugs, lots of love kathy xx i miss talking to you my very dear friends, take care, stephen,debbie,donna, xx kat xx


Donna 17 months ago

Hi kathy, Debbie and Stephen it has been a while since I have been on here but things have been all over the place pain is awful and been having a few problems with my teenage daughter she is a wonderful girl but all this has hit her quite bad I have trouble getting Her to school I think she is scared to leave me the summer holidays are coming up and I want her out with friends not stuck in with me. Kathy I hope your daughters wedding went well and you got through it ok.

Sending you all my live xxx


Kathy scott 17 months ago

Hello donna, thank you for your message,

yesterday went well, we had a lovely day, only 20 or so people, cant believe its all over. I am exhausted never mind. Donna, my heart goes out to you,my youngest daughter, who married yesterday, felt that i was her responsibility,her school work took a step back and her friends, she felt she was left with me, her two other sisters, had left to live their own lives, so she stayed with me, she had grown up with the 'ill mummy' and bless her at an early age would run in from school and run straight up to the bedroom, she knew where i was, laying down. Talk toyour lovely daughter, many are not as lucky to have such caring family, tell her she has to go to school, and be with her friends, i know its hard donna, really i do, we never asked for this, this illness and all that comes with, but tell her you are so proud of her,of all she does, but then im sure you do, but its ok for her to do all the things she has to do, then you can cry after, like we do.i send you my love, and a hand to hold, please let this be shown to you.love kathy xx


Donna 17 months ago

Thank you Kathy you always know what to say to make me feel better. Xxx


Dibbs 17 months ago

Hello, lovely people! Are you still using this site to post about your adhesions? I have them too - and I just read all of the above and wept all the way through...I feel like I know you all, and your stories were so moving...I am a Debbie too - so I am using a shortened version of my nickname instead...If I may be so bold, may I recommend a Facebook group which is also wonderfully supportive and informative? It is called Adhesions Pain and Suffering and there are almost 1000 members on it now - which just goes to show how common these wretched adhesions are!

I am very fortunate (right now, touch wood) not to be as bad as you, or some sufferers on the FB group - but my life has changed irrevocably and I do cry - a lot. I am divorced, with a ten year old son - we share custody of him, and my Mum helps me a lot...I get very lonely still - and sad that I can't be the parent I would like to be...I do have a fella but he is back in the USA right now as both his parents passed away at the end of last year and he has to sort all the legalities etc - we have been apart for almost a year now and I miss him - but, hopefully, he will be back soon!

I am taking / doing various things which I am finding helpful in keeping the pain, torment, and restrictions that come with adhesions as manageable as possible - and am more than willing to share, if you would be interested? Certainly, the things I am doing are keeping me off traditional pain meds (for now, lol) although bowel obstructions are always lurking just around the corner - very frightening.

I will also tell you a little bit about my adhesion story, if you would like? I thought I'd check and see if there is anyone out there first, as the last post on here was a week ago and I didn't want to just be chunnering away to myself like a mad thing, hehehehe!

Much love - and thank you so much for sharing your lives on here.


Dibbs 17 months ago

I hope my last post shows up - it appears to have vanished! I was just introducing myself and thanking you all for sharing your beautiful, moving, emotional accounts...Fingers crossed you are are all still using this site!


Kathy scott 17 months ago

Hello Dibbs, welcome to our little 'band of brothers', perhaps band is not a good word! I am very new to this wonderful board,this i stumbled upon and i am so very grateful, i have very dear friends, who i care about very much, stephen, bless you, invited me to share my life story, my life with adhesions, i am no longer alone. Debbie and Donna, come to my side when i call, a d have never let me down, thank you for your advice with regards to Facebook, i am not on Facebook but will ask my daughters to help me. We, if my friends dont mind me saying,have all been struggling as you have noticed, no messages, but as soon as we feel stronger will be our old selfs again. Yes, you will loose you messages, it happens, and upsets me very much when ithappens, fingers x, this is shown. Take care, with kind regards, much love, kathyx


Dibbs 17 months ago

Thank you so much for welcoming me to the throng, Kathy! This site seems a good place for sharing personal stuff - I tend to use the FB group to ask for advice / research on the topic of adhesions. As I say, I have learned a LOT - and am doing various things / taking various supplements to help me. I get incredibly angry about this condition, not least the lack of recognition / compassion from medics...As a consequence, I have become a bit of a political animal, attending meetings with / writing to the health boards - and in a fortnight I have a meeting with the CEO of the UK's endometriosis charity (the disease which started my adhesion journey). I am more than willing to share my discoveries if you think they may be of use to any of you - but, in the meantime, thank you again for opening your hearts and lives on here...Bless you all. :-) xxxx


Donna 17 months ago

Welcome Dibbs we are a very close group who always take care and try to help one another. As you have probably read we share our stories and anything that might help someone so please go ahead and let us know your story and anything you have tried.

Hi kathy,Debbie and Stephen how are you all at the moment hope your all as good as you can be all my love Donna xxx


Dibbs 17 months ago

Thank you, Donna - and hi! In a considerable amount of pain/ discomfort this evening - 5 days into a partial bowel obstruction (due to the adhesions). I have stopped bothering going into A&E now - they x-ray me and say it all looks "fine" - just lots of constipation and dilated portions throughout the bowel. I've given up trying to explain that that is a sure sign of adhesions narrowing / constricting things. It's pointless. They just look at me like I'm mad. I'll spend hours and hours there, just to be given a laxative and sent on my way...I also had my second session of pelvic physiotherapy today where she pummeled my belly and did biofeedback (an electrode thing inserted in one's lady parts) and then hooked up to the computer so you can see how your pelvic floor muscles are working (or not). Mine are incredibly tight from pain. The whole appointment hurt - but I do feel like it helped - although still no 'movement' on the loo. When I've had a bit more of a rest, I'll write up all the things I am doing / taking / trying - in the hope that they might help you all somehow. xxxx


jackiemcharland@gmail.com 17 months ago

Hi I am reading all of this and saying oh yeah that's my day, I'm 33 years old and all of this started when I was 21 I have chronic pelvic pain daily and I have had five laparoscopies a full hysterectomy my gallbladder out and my appendix out. I have been on narcotic pain medicine for 12 years and now they want to stick me on the thoracic spinal medication pump.

If anyone has any information or is tried that the medication pumps please send me an email at jackiemcharland@gmail.com.

I have been fighting with t

pain doctors because they refused to raise my dosage and they want you to be on the nonnarcotic medications, which don't work as well and then they try to psychiatric medications which make me crazy because they say I'm depressed. Of course I am depressed .

it's been a real fight because yeah they do say it's in your head or you're making this up or this is just how it is you got to learn to live with it for through it all that stuff I'm tired so very tired 12 years of pain and I've been to over 30 doctors and eight different states into countries like I don't know what else to do


jackiemcharland@gmail.com 17 months ago

I didn't quite finish what I wanted to say,

I'm really scared of the medication pump they say 1 out of 397 units is is defective, that's a lot of defects.

I also feel like what if it causes more damage more problems.

It also has to be replaced every 5 to 7 years and there's a catheter that runs into your spine .

Has anyone had this medication pump? does anybody know anybody who had this medication pump ? Please please if you have any advice or information please email me. Jackiemcharland@gmail.com

Also if anyone knows of any support groups for chronic pain in the Las Vegas Nevada region please let me know.


Kathy scott 17 months ago

Hello dibbs, i read with horror, i couldn't take that treatment. I have DOCUSATE 100MG CAPSULES 2 x morn and 2 nite., as i take morphine this can make you constipated, and as with other prob with my bowel ihave to have gentle 'help'., Dibbs your bowel condition needs addressing, i have bee turned away from doctors many times and a and e, but be strong when you can, and get help. My meds,help, me, give these tabs a try. Take care. Love kathyx

Hi only me, love to my dear friends, a bit difficult at moment..love kathy xx


debbie 16 months ago

Hi friends, sorry that I have been away for so long but it was really bad infection and as you know infections cause adhesions! Oh hell! Anyway back here again (is that good or bad?) and on the better side of it now crossed fingers. Hi Donna great to see you again had me worried for a while there! Hi Kathy how are you, bet you looked great in your outfit! Hello Dibbs welcome as you have read I am totally mad but I blame it on the pain killers. Well friends just wanted to say hi and that hoping you are all well and here for you all again Stephen hoping you are also getting there love and hugs to you all Debs xxxx


Dibbs 16 months ago

Finally had a BM, lol! So the partial has passed for now...The colorectal surgeon I am seeing wants to fillet me like a fish and do a huge vertical cut to chop out the defective portion of bowel - uhhhh, no - that will create more adhesions around my SMALL bowel - and there ain't no way that can all be cut out! So I am getting all of my records together and going to try to see a specialist at St Marks in London, the big bowel hospital (I will have to fight because I am in Wales and we aren't allowed to see doctors in England) but I reckon if the redundant portion could just be stitched into the correct place instead of it being flopped and stuck into my uterine cavity (following a hyst. 7 months ago) I could go normally-ish again and wouldn't have these awful obstructions...Since my op. I have lost so much weight - 40 pounds now - because I can only eat a tiny amount of low residue foods each day or I block up.

Anyway, since my obstruction has passed, I am back to a dull ache / pressure again rather than pain - so I plan on trying pilates tonight. My physio recommended it!

I am so sorry to Jackie - I have no experience of pain pumps...Thus far I am managing without regular pain relief. I take various enzymes and supplements that have a cumulative pain-relieving effect instead. They're not immediate but, after time, they really help.

So nice to meet you all!


Kathy scott 16 months ago

Hi its kath, hope my dear friends are as well as can be, hello jackie, i dont think we have met yet? Bit all over place at mo. Ive been in hospital since i last wrote, passed out last wednesday, ended up at local hospital then the big heart hospital in cambridge suffolk. I have had pains in my chest going on since 2011, and been on meds. Apparently, my heart has been firing off then slowing down too much, now know why broke nose, and passed out. This may not send? but im home today, and have pacemaker. More pain, sorry to winge. Lots of love i have missed you all so much kathyx


Donna 16 months ago

Oh kathy I'm so sorry to hear your news please don't ever apologies you don't winge. I hope to god that now you have a pacemaker the pains will stop and at least one thing will be better for you. I really wish I could help you somehow all I can do is send my love and friendship.

I have not been to good lately they are still lowering my morphine but still haven't given me anything else for the pain all I seem to do at the moment is cry I cry for the pain and I cry for my old life witch I miss so much I keep thinking how because of that one surgoen my whole life has changed I can't do anything and that surgoen is just getting on with her life it's just not fair sorry I know I sound like a spoiled brat. Hi Debbie hope you are doing ok and Stephen have not heard from you in ages hope your doing alright.. Hello again Dibbs and welcome Jackie .xxx


Kathy scott 16 months ago

Hi its me, thank you Donna for sending me your kind wishes, i will keep them close, i have felt so bewildered, 61 and a scared rabbit! All the surgeries ive had, this shoukd have been no worries, but i felt alone. My family have been wonderful, i am very blessed and love them dearly, they are my life.

im so sorry you are still in need of help, and so much pain, i am holding your hand, we will cry together, ive done a lot of that lately.your surgeon was female, mine male, that ruined my life.i understand, i too miss my passed life, i understand, you are not a spoiled brat, you are a lovely caring person, why you? I feel sorry for myself as well, what a pair we are. My very dear friend, i send you my love healing thoughts. Take care kathyx always here if you want me. Please let this go.


Dibbs 16 months ago

I think we all feel very sorry for ourselves - rightly so - when the nature of this illness means it goes unrecognised by so many, including the medical profession...How many times have we heard, "adhesions don't cause pain / they're not life-threatening" when, in fact, they do both.

Like you, I also feel angry, and I grieve for my past life...I still have hope that one day surgeons will be forced to appreciate their role in making us so poorly, and that medicine will seek to find a way to make us better. I have made it my mission to tell as many people 'in power' as possible by writing letters to all who may be even remotely connected to the health services. Next week I have a meeting (via skype) with the CEO of Endometriosis UK to tackle a range of issues with her. I also set up a group for women in Wales suffering at the hands of these disorders, and my health board has made me a 'stakeholder' so I will be consulted on various related topics...I won't stop until have made a difference somehow!

I also haven't forgotten about detailing some of the things / supplements I am taking which enable me to keep functioning with minimal pharmaceutical meds (so far, touch wood). I will get to it! In the meantime, I am sending you all loads of love, hugs, hopes, and well wishes. xxxx


Susan 16 months ago

Hi Everyone. I have constant nausea due to adhesions around my liver. Is anyone in the same boat? I am on Zophran, but that does not work some days. Can anyone help me? Advice?

Thank you!!


Kathy scott 16 months ago

Hello susan, sorry to see you are having nusea from your adhesions. I take meds for sickness called DOMPERIDON 10mg, i take two tabs whenever needed. Dr tend to advise me each time they prescribe to not take these tabs to regular, hut i am careful with them, but they do work, instantly and fast. Mention this to this pharmacist and or you GP. Best wishes. Love kathyx


Kathy scott 15 months ago

I miss you, my very dear friends, who i found when i was in the dark and so lonely...

There you were..thank you. Lots of love hugs, healing thoughts. Your friend always kathy xxx


Kathy scott 15 months ago

Hello my dear friends, how are you? As you haven't put any messages on i can only guess. This is the second time i have written, i hope this 'goes'. I wanted to say 'thank you' for being here for me, i was so in a dark place, when i found you. I miss you, lots of love hugs and healing thoughts, kathy xxx


Dibbs 15 months ago

Hi Kathy - I'm here - lots of love to you and the rest of the group! I really think - if you're brave enough - that the FB group of which I am a member would be great for you all - as there is ALWAYS someone online with the condition to advise / support / give cyber-hugs! There are now over 1000 members, although obviously they don't all post, lol! It's such a friendly community - and we're all going through the same hell. However, it's been invaluable to me, not only for the words of encouragement but various tips that people have posted, of which I've taken advantage and then passed on. I am posting a link to the group here:

https://www.facebook.com/groups/414454158602482/?f...

We now have a highly respected medical researcher on board who has spent the last 28 years examining pelvic pain/ adhesions - he is the guy who set up International Adhesions Society, a resource that lots of sufferers have used.

If you don't feel able to use FB, I did promise to list helpful supplements / therapies that are working for me / others, so here goes:

* serrapeptase

* nattokinase

Both of these should be taken in capsule form; they're available from health shops; they're enzymes that work by 'dissolving' / eating away at the fibrin that makes up adhesions. You need to give them 6 weeks to feel any benefits;

*thiosinaminum

This is derived from mustard seeds and is a homeopathic medicine that again works on reducing the effects of adhesions. You can take it in capsule form, or use it externally as a cream on the affected areas. You can make a paste yourself by crushing mustard seeds and mixing with a little water.

* anti-inflammatories, to reduce the conditions that adhesions love - I advise magnesium, turmeric, and black pepper (piperine). The black pepper increases the bio-availability of the turmeric so it's important to take the two together;

* pro-biotics and aloe vera - both of these improve bowel health, something which is vital to those of us suffering bowel problems as a result of the strictures caused by adhesions;

* specialist pelvic physiotherapy - this involves intensive massage, and mobilisation / manipulation of the organs affected by the adhesions. Alongside the enzymes I mentioned above, this is really proving to 'break' lesser adhesions, and stretch thicker / larger ones. The physio may also offer internal work where they can ease pain trigger points;

* intensive abdominal / pelvic massage - this is also known as fascial release, where deep, focused massage of the affected areas can smooth out the knotted fascia beneath the skin and, again, break up the adhesions;

* stretching / rolling over an exercise ball - this should be done on and off throughout the day and is vital to prevent us being 'scrunched up' by adhesions sticking our innards together...Also, if done regularly, with a clockwork motion, you can stimulate your bowels and compensate for the constipatory effects of the adhesions.

* personal, hand-held ultra-sound device - used on the 1mhz setting, the pulses given off by these devices can penetrate about 4 inches below the skin. They can ease pain and help to break down adhesions (physiotherapists use them for all sorts of injuries / traumas / stresses). You should use it in 10 minute bursts, keeping it moving in circular motions over the affected areas.

Please do give the above a go, folks - so far, 8 months out from surgery, I'm nowhere near perfect, but I am still (touch wood) not having to take pain-killers (with all of the horrible side-effects they can have).

I really hope to see you in the FB group! Much love to you all, my dear friends. xxxx


Kathy scott 15 months ago

Hellp Dibbs, how are you? This always seems such a silly question, but ment with much love! Im having bad days at moment cannot cry, cos then i camt breath, see broken nose! My Gp has arranged for E.N. T to put me back on list to help with breathing.

Anesthiest refused to do op. On my nose due to heart, but with pacemaker perhaps can now help me. Dibbs thamk you for all the informatiom I will re.read it, but it looks really good advice. Your energy burst out, which is great, im sorry but I am really weary and beaten down, doesn,t that sound totally whimpy! But i am with you, i have battled for 30 years, that dreaded word adhesions. Bless you. Take care. Lots of love to you and all my dear friends kathyxx fingers x i will press go.


Dibbs 15 months ago

IN NO WAY are you a wimp, Kathy - you are a WARRIOR - an admirable woman who has fought one HELL of a battle for over 3o years - NOBODY could do more...!!! I wish I could give you a hug and tell you it's going to be OK! Please just know you're not alone in this fight. Lots and lots of love.


Donna 15 months ago

Hi, Kathy I'm so sorry it's been so long things have not been great I am so low right now and can't seem to get out of it this time the doctors changed my anti depressants but things got worse I'm still slowly coming off the morphine that's getting harder they still haven't been given any other pain relief I'm just so tired of it all and I have only been suffering for 3years so after doing this and with so many more problems for 30 years there is no way you can call yourself wimpy you are strong and very kind lots of love and healing thoughts. X


Kathy scott 15 months ago

Hello Donna, my heart goes out to you...if only i could help you, my very dear friend. How you cope with reduced morphine, i dont know... lets think, we are going shopping, i will buy shoes, what would you buy? Lets stop and have a tea with lots of cream, blast to the diabetes ha ha, lets laugh, and giggle like kids, for a while we are good....i will wave you goodbye and drive off until next time...my friend i send you love and healingxxxx fingers x please fly to donna. Love kathxxx


Kathy scott 15 months ago

Donna, i hope you didn't think i was being unkind, i know how awful you are feeling, the darkest place, no one to help, they care,only they don't know what to do to help. I have missed talking to you, me too with pain soaring, like now, but you are strong lady, you will square your shoulders to this cruel illness. I send you my love strength an d healing thoughts.take care kathyxxxx xxxfingersxxxxx


Donna 15 months ago

Hi Kathy shoes for me to oh and clothes for my daughter I love shopping for her and maybe a glass of champagne forget all the awful medication thank you Kathy you always manage to make me smile you could never be unkind. I have missed talking to you but as you know things can get to much and the pain takes over.

Sending you love and healing thoughts xxx


debbie 15 months ago

Hi Kathy, Donna, Stephen, Dibbs and everyone !!

Hi all sorry that I have not been here to help and support you all, feels that I have let you down but been really unwell, computer problems as well. Have really missed all my friends but have constantly thought of you all! Well have to see neurosurgeon to try to help next week. My white blood cell count has bottomed and adhesions are giving me hell. Kathy I still have my sense of humour though! Well sending lots of love and hugs to you all and Kathy remember your heart was made by angels love! take care everyone :) xxxx


Kathy scott 15 months ago

Hello debbie, good to see you, sorry you have been poorly, been thinking of you, missing you all my dear friends... l wish we could really say how we are, isnt it difficult, we put on our brave faces, and that gets harder every time. lm due to see the Gp., next week, l dont know where to start to tell her how l feel and whats happening. I am at the hospital end of the month, to be re.assessed for my nose op, again, then consultant for pacemaker....sorry to ramble on. Im ok., i think of you and look on line every day, but its been difficult lately, as it is for us all, im sending you all hugs, lots of love, thank you for your kind words debbie, i do keep them close, bye for now love kathyxxxx


Kathy scott 15 months ago

All the times i have sent messages they have disappeared! I have been upset! This time i wish my previous message had disappeared, all i wanted to say was, i am sitting here crying and feeling miserable with pain...instead i said, isnt it difficult! What a fool,me! I am sorry debbie you have been poorly, i hope you will have some help, next week.we will all get strong again, lots of love to my new friends and not so new friends!! I better not say old!! Love kath xx fi gers xx press button


Dibbs 15 months ago

I just wanted to say that I am still following the progress of all of you, and wishing you all well...I had a 2 hour Skype discussion with Dr David Wiseman (who set up the International Adhesions Society) just this week. He is a doctor of pharmaceutical medicine, and his specialism is adhesions, research and development...We were lamenting the fact that medics fail to appreciate the awfulness of these bloomin' things, and the various reasons why so little research is being done into barriers, etc. There ARE promising ones out there - but the problem is that they are being developed by relatively small companies who don't have the funds to conduct big clinical trials...Nevertheless, we got to talking about other mechanisms / therapies which might help reduce pain. He confirmed that pelvic / abdominal massage and physio can be HUGELY beneficial. Truly, they're helping me! Anyway - enough of that - all I really wanted to say is that I'm sending you all gentle hugs. xxxx


Kathy scott 15 months ago

Hello Dibbs , just read your message, you are striving for us all and finding help with massaging and physio, im so pleased for you and us.i am struggling at the moment. The Drs. Surgery were so kind to me today, l went for an appointment re: asthma clinic., saw l was poorly and ended up having an E.C.G. and being cared for...i am so very grateful, oh and a hug, from my friend at the doctors.

It would be good to have more research into adhesions, l was infront of the 'old guard' doctors, who did not believe in adhesions., my journey began in my 30's Im 61 now, and still the pain takes me to unbelievable pain level. When l reach the 'rocking' level like today l am struggling...l have managed to sleep, things have calmed down slowly. I know it all ends up with money....if the drug company have no money.....

Take care Dibbs, l hope you are having a little peace, thank you for all you are doing, and your gentle hugs, thats lovely. Love kathyxx fingers always xxxx


Dibbs 15 months ago

Kathy - your suffering makes me shed tears - truly...You're so brave, and so NICE throughout it all. What a lovely lady you are - you're ALL lovely, in fact...I wish I had a magic wand to help you all, but I will do my best to make our voices heard.

Bless your heart. Love and hugs. xxxx


Kathy scott 14 months ago

Donna its me, can you help me? Iam going thru awful side effects,morphine, newhigher dose gabapentine..and heart tabs, so many tabs. Ive been told my horrendous night sweats, changing my clothes etc., could be morphine, how are you being reduced...am l awful asking you? Iknow you are suffering, lm being selfish, ive just rang the drug dependancey people, im thrashing about, donna, wbat can l do, bless youfor reading this lv kathyxxxx


Kathy scott 14 months ago

Hello dibbs, l should have messaged you sooner, im really struggling at the moment. As you see ive ask donna about morphine, but i dare not change my pain relief the only help is from morphine....i dont know what to do, but it could be hormonal...i just dont know. Sorry just so mixed up. Take care lots of love kathyxxx


Dibbs 14 months ago

Kathy, love - the morphine is actually going to be making things WORSE with your adhesions - the intestines / digestive system / bowel HATE opiates - so morphine will actually compound your issues! I have spoken to those on FB with the same terrible pain as you, and they all seem to think that Targinact (which comes with a built-in anti-constipation medicine) is by far the best thing. A lot of them are also using kratom (a LEGAL , natural, pain-killer). Please look it up online. So long as you take it with a stool softener, again, apparently, the effects are marvellous.


Kathy scott 14 months ago

Hello Dibbs, thank you so much for your kind message. I really got myself into a state, i do not like to talk to any of the family, especially my husband, who has had heart attacks, i so try not to worry him.i am going to the GP on wednesday, although my husband does not support my decision to go...

Thank you so much Dibbs, for the information regarding the medication, i am terrified to lose the morphine, i cannot go back to the horrendous pain. I guess i just lost control over the last few days, but i will talk to the GP., on Wednesday. Lots of love Dibbs, such kindness, thank you. Hugs and healing my dear friend. Love kathyxx fingers Xx here goes press the button


Donna 14 months ago

Hi kathy you poor thing morphine is just horrendous yes it definitely can cause sweats I'm actually going thru them as I'm lowering my dose it causes so many side affects and they are not the same for everyone please be careful with upping your dose because the higher the dose gets morphine can make the pain worse ( I was not told this until it was to late) so you don't know if it's real pain or morphine pain. I just long for pain relief that just works I know Dibbs you kindly suggested abdominal massage but I can't have anything touch my abdomen even with a feather it's just horrendous. I'm being refused 10% evey 4 weeks from MST they have stopped my oral morphinne completely now I have still got a long way to go. I wish I could tell you something that is going to help you straight away but I'm so sorry there is nothing I know of don't ever be tempted to just stop the morphine cause you will be a lot worse. I'm here for you kathy I just wish I could actually help you. I hope this all makes sense sending you all my love and healing thoughts kathy and everyone . Xxx


Kathy scott 14 months ago

Hello Donna, i hope so much you are alright, i cant put 'well'

Thank you for your message, i have been in such a bad place.

Donna, im not going to try and write, its loosing text, and keep shutting down, i will try later on .lots of love kathy xxx


Kathy scott 14 months ago

Hello Donna, how are you today? Im going to try again..

I thank you for you message, im sorry you are suffering side effects, i know how awful they are, this is the worst they have evrr beenfor me, my strongest meds are morphine, pregabalin,metformin, beta blockers for heart,all quite severe side effects. This is where my probs. are. I am going to ask the g.p. to reduce pregabalin,and as you advised, no increase in the others. I fear the pain though,What with everything we have going on with severe pain, the side effects are the last thing. What are we to do? my husbands asleep, i am staring at the wall, no more meds till 6 am.we really cant discuss medicine anymore, i end up crying, he walks away in despair. Enough of me, i reach out to you, its a song title sorry... but i do, with all the love strength healing i can find to take the pain from you. To see the relief on your face, worth a million dollars. Thank you for your help, i read Dibbs messages, a lovely lady, her energy, strength,courage are amazing, we have a young fighter to help us., Thank you Dibbs.

My love to you Donna thank you, i send you my love kathyxxx


Kathy scott 14 months ago

Hello, its me, how is life? Being kind I hope.

Im sharing, if thats ok, im going to hospital today for pre.assessment re. Broken nose. I will get date for op. Hopefully, now heart ok.

How i wish i didn't have to go thru a 'procedure'., im very grateful for the care, i genuinely cannot breath, its scarey, but with many procedures under my belt! Can i do another one? My heart is pounding as i type.

Love to you all, please let my friends find some peace, kathyxxx


Lor 14 months ago

THANK YOU ALL FOR GETTING ME THRU ANOTHER 5 MISSERABLE PAINFUL DAYS. I ADMIRE ALL OF UR COURAGE AND NO LONGER FEEL SO ALONE. THANK YOU


Dibbs 14 months ago

Kathy - hope your nose op. is in the foreseeable future, and that your ticker continues to behave itself!

Donna, Debbie, Lor - and anyone else reading - hope all of you are bearing up and in not too much pain today...

Thinking of you all, and sending love. xxxx


Kathy scott 14 months ago

Hello my dear friends, old and new, welcome Lor, l so sorry you are in pain, here we know all about pain, l send you a hand to hold, to give you strength, i will listen and be here for as long as you want. You are no longer alone. Love to my friends i hope life is being kind, i am thinking about you all. Hi Dibbs, my op is in october, perhaps if all is well, thank you. Lots of love kathy xxx


Donna 13 months ago

Hi all hope your all doing as well as you can be. I feel like I alwa winge and moan on here so sorry for that but Im in a living hell at the moment well I don't think I can call it living when all I do is sit in a chair or my bed all day every day the doctors have cut my morphine down so low but still haven't given me anything else or told me what they will try next I was wondering if any of you could let me know what you have tried over the years and what has been the best / worst thank you for reading and putting up with me. Love and healing hugs to you all xxx


Dibbs 13 months ago

Hi Donna - if you scroll up a few posts, I have described some of the things that are helping me (alternatives to medication). However, from what I have learned on the Adhesion groups on FB, one drug that does seem to help sufferers is Targinact, which incorporates pain relief and laxative to stop the constipating effects of most opiates...Also, a lot of people are using things like Norytryptilline. You may want to ask your doctors about those, although I do think the alternative therapies / supplements are really helping me, although they're not a quick fix in the same way as pharmaceutical pain-killers.

I really hope all of you lovelies feel better soon...I wish it all the time. Much love to you all. xxxx


Donna 13 months ago

Thank you so very much Dibbs I will certainly talk to my g.p and my pain team im not sure about the massage cause anything touching my abdomen or pelvic area is so unbelievably painful even wearing clothes hurts , my doctors want me to have hydro therapy but where my body has swollen and I have put weight on I'm very self conscious have you tried hydro do you know if it's helpful? Sorry about all the questions I just want it all to end. Thanks again Dibbs it really means a lot to know that there are others who understand.

Love and happy healing thoughts to you all xxx


Dibbs 13 months ago

I think hydro would be really helpful as it can be incredibly soothing and relaxing, as well as a good form of exercise without putting pressure on the body...I would still advocate massage - but it sounds like you may have developed fibromyalgia as a consequence of chronic inflammation throughout the body...Are you taking anti-inflammatory supplements? They're not a quick fix but I found after about 6 weeks, my levels were massively reduced...You would need to check with your doctor about enzymes like serrapeptase and nattokinase (I take the strongest available, in capsule form) but I also take magnesium and turmeric capsules (the turmeric needs to be alongside black pepper / piperine because this increases its bio-availability by 125%). If your reaction is to scoff / pooh-pooh natural remedies, I completely understand - I was like you - but having tried pharmaceutical meds to no effect, I was desperate - and these DO WORK! Also, for fibro. symptoms, have a look at something called D-Ribose (online). A few of my friends are having great results with it. All of these things might, in time, help you feel more able to tolerate adhesion-focused massage.


Tina Vesper1 profile image

Tina Vesper1 4 months ago

Hello everyone. My partner and I work successfully with abdominal adhesions as a duo: Tandem Therapeutic Bodywork. Our website/upcoming blog etc are a work in progress. If you would like to know more, email me at

tinavesper@OralTraditionsHealingArts.com

Also, we both have personal experience with abdominal adhesions, for which there are many causes. We offer non-surgical, non-medication solutions.

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