My Abdominal Wall Endometriosis Experience

My Exeperience with Abdominal Wall Endometriosis

In November 2004 I had a cesarean section to deliever by beautiful daughter. In August of 2008 I started having strong sharp pains in my abdominal wall caused by endometriosis in my abdominal wall. It later required surgery in October of 2008 for complete removal. Needing surgery for endometriosis in my abdominal wall is rare, but it does happen to a small percentage, some studies suggesting 0.1% of cesearean births cause endometriosis in abdominal wall to develop.

It seems my daughters birth has been the gift that keeps on giving. First, an unplannned cesearean section, then a hernia surgery in November of 2007 due to what is believed to be surgical tearing from the c-section. Now, surgery for endometriosis in my abdominal wall. Lucky me.

surgery for endometriosis?
surgery for endometriosis?

Surgery For Endometriosis Pain

It was before the summer of 2008 I started feeling something odd in my abdomen. I had a hernia surgery months prior, and Mirena IUC in my uterus so I figured it was complications of one of these. I did not know yet that I would require surgery for endometrosis in my abdominal wall. I ignored it and went about my life.

In late August of 2008 the uncomfortable feeling in my abdomen was becoming increasingly annoying. I was starting to consider pregnancy, tumor, etc. From Late August 2008 to the middle of September I took 4 pregnancy test. All negative. I also found a lump in my abdominal wall. I was convinced my prior surgery had failed.

Around September 17th the annoying uncomfortable feeling had increased into downright painful. The spasms that feel like stapling, or lightning bolts through my abdominal wall was becoming too much for me. I spoke with a doctor who was convinced as well it was my henria and he offered some pain medication. He said that it would take a short time, but once the hernia got the space it was looking for it would feel better. He was right within less then a week, the pain was still there but strongly subsided.

For personal reasons I was unable to see my surgeon the first day in October. She felt the lump which except for when touched, hurt very little. She ordered a cat scan. When the results came back the first questions she asked if I'd ever had endometriosis. No, my periods had always been simple, and pain free. I didn't believe I ever had endometriosis. Her other idea where that it was scar tissue or very unlikely a tumor.

As The surgery for Endometriosis on October 20th approached I began to feel more and more pain again. By just a few days before I was hurting quite badly just waiting to get this overwith. I was afraid that I had scar tissue and that the pain I was feeling was constant tearing of the tissue.

A few days after the surgery for Endometriosis the results came back that the painful lump in the right side my abdomen was indeed Abdominal Wall Endometriosis.

Ceserean Section Can Cause Endometriosis in the Abdominal Wall

The research shows that in 0.1% of C-section delivered babies. The mother can develop Abdominal Wall Endometriosis years later. The suggested theory is that when the uterus is large and cut open for cesarean section, that some of the cells that make up the lining of the uterus become misplaced and find themselves in the abdominal wall during the delivery.

Long after the birth, sometimes many years later. The Endometriosis in abdominal wall will grow. Becoming more and more painful especially at the time of ovulation(my time is just after the middle of the month, hence the reason for the increased, and then subsided pain).

If you suspect you may have endometriosis in your abdomen, contact your doctor. You may feel a lump, experience increased pain during ovulation, and the pain may feel like quick bolts.

Think You May Have Endometriosis In Your Abdomen

If you think that you may have abdominal endometriosis then speaking with your doctor should be your first step. But, doctor visits, cat scans and surgery are expensive even with insurance. If your not ready for doctor bills but still want to have a better idea, a journal may help.

Keep a journal for the next 3 or so months. Keep track of your cycle including ovulation and menstruation and keep detailed record of the pain you experience and an intensity scale of 1 to 10. This will give you a better idea of when it's really bad. If you notice a pattern that it is indeed much worse during menstruation and such, then definitely pursue more medical attention.

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Have You Had Endometiosis In The Abdominal Wall? 103 comments

Tara 7 years ago

I had the same thing happen to me only my appeared much sooner and had the operation only 9 months after my son was born via c-section. However only 3 months later the pain started all over again. It is now coming up on the 1 year anniversary of my surgery and the gyn is discussing surgery again next month (i have a new gyn now). I just don't know what to do I'm afraid that it will come back again but also that I will have lots of scar tissue from having this area cut on 3 times in less than two years. We want another child which limits some of my other options.


JenJyrel 7 years ago

I had 3 c-sections one in 1998, one in 2001 and one in 2005. I had 3 amnios with the first pregnancy. About six months after my child was born in 2001 I started having severe pain in my abdomen associated with my periods. My dr. ordered a sonogram in 2003 that showed nothing, and the dr. just assummed it to be endo. After doing my own research, I finally read some info on incisional endometriosis and abdominal wall endometriosis. Thank the Lord for the internet! I had a bump removed that was just in the fatty tissue, not in the abdominal wall just above my c-section scar in Oct. 2008. It tested positive for endometriosis. It was about 1 1/4 inches big. Then after the surgery, I still had two spots up higher by my belly button that hurt, which I told the dr. about before surgery, but he assumed they were something different. After the surgery, I insisted that it was exactly the same type of pain, and related to my periods, and I had printed the information off the internet that you can get endometriosis from amniocentisis and that an MRI will show the endo in soft tissue. Because the dr. didn't think the MRI would show anything. The MRI did show 2 more spots of endo in the abdominal wall, so now I'm scheduled for surgery again. So, after having this cyclic pain for almost 8 years now, I hope that after this surgery I won't have it anymore. I would describe my pain as feeling like a knife is stabbed into my belly in the specific spot where the endo is. The spot they removed in Oct. 2008 doesn't hurt anymore, and it was well worth going through the surgery!


Karen Knox 7 years ago

I have abdominal wall endometriosis and had the laproscopic surgery for it. I belieeve it is from my c- section.. I am hesitant to have the surgery again and am looking for a new Ob-Gyn as I do not want the same one since i never had female problems until after the c-section.. The pain is pretty horrendous and I have given up on heavy pain meds because they interfere with my sleep.


Amber 7 years ago

I just had surgery to remove my abdominal endometreosis. It has been over seven years since my cesarean. The mass removed was about the size of a silver dollar.


Jason 7 years ago

Is it possible to NOT experience pain during the early stages of tumor growth?


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sunstreeks 7 years ago from Western Washington Author

Jason, endometriosis isn't a tumor, it is a mass of uturine lining cells.


Carrie 7 years ago

This is the second time I have had the lightning bolt feelings in my uterus area. I am not sure what it is, but I decided to look it up. I was directed to this site. Is this the only thing it could be or is there anything else anybody knows about? Is there anything I should do to determine? I don't have insurance. I did have a c-section 5 years ago but had a regular delivery less then 3 years ago. Anybody have any suggestions or comments. Thanks.


sunstreeks profile image

sunstreeks 7 years ago from Western Washington Author

Carrie, go to the top of this page and under my picture there is an option to contact me and send me a message, we can talk in email if you would like. I'd rather not share my e-mail here. This goes for anyone who is scared they may be experiencing this. If you need someone to talk to, I'm here.

For me, before the surgery confirmed it was endometriosis, there was the possiblity of other things such as just a mass, a cyst, or that my hernia had torn.

Pay attention to your menstrual cycle and the abdominal pain you are feeling. Keep a calender and for the next 3 months, put a check by each day you feel pain, and a number for how many times. (yes, mine also felt like lighting bolt its hard to miss and you can count them in addition to the sore ache) Also track the days of your period. Endometriosis will bleed the same way your uturine lining will. If the dates of abdominal pain coincide with your period, the possiblity is higher it's endometriosis.

Also, my abdominal mass was large enough that I could apply pressure and FEEL the mass. Whenever I pushed on it, it felt like needles. Search around your abdomen and feel for a mass. Do not get scared, its counterproductive. There are many reasons for pain and abdominal mass, or abdominal growths that do not mean something awful. Also, don't be afraid at the idea of endometriosis. It can be treated with hormones and pain meds before resorting to surgery.

Keep us posted and if you need someone to talk to, send me a message I'm happy to help anyway I can.

Stephanie (sunstreeks)


Jennifer 7 years ago

I recently had surgery 10 days ago to remove a 3cmx3cmx2cm mass located on my left lower abdominal wall. It was Endometriosis. My recovery consists of NO lifting, pushing or pulling anything greater than 10 lbs for 12 weeks. (No work for 2-4 weeks).

It all started about Dec'08/Jan/09, I had been experiencing a lot of pain in my left abdomen which would last about 1 - 2 weeks around my period. The area felt very painful and was tender to touch. When I would hold my stomach, I noticed a golf ball size lump. I went to the doctor and had a urine test and ultra sound. It showed a mass. I was then sent for an MRI and it was confirmed that I had Endometriosis on my abdominal wall, mostly likely a result of my 2 prior C-sections. (My first child born 10 years ago (1999) and then my twins were born 5 1/2 years ago. (July 2003)). I needed to do something about this because I dreaded the next months period and the pain that would accompany it.

I was referred to a General Surgeon due to the mass being on my abdominal wall and not uterine wall, who gave me various options, but for me, the conclusion was to remove the soft tissue tumor (called Endometriosis) and be rid of the pain. The General Surgeon agreed that this was the best way to be rid of the pain.

Now that I have had the surgery, and my period just started 1 day ago - the pain was not there this month, only the tenderness of the incision area. I was also told that a mesh was used to repair the abdominal wall after the soft tissue removal.

Definitely take notes of how your feeling and when the pain occurs. I've done some research and found that if you leave Endometriosis, it can grow and cause futher complications, etc. I would also like to add that I saw 2 different General Surgeons and luckily the second one was familiar with my condition and provided me with a handful of options. I felt comfortable and knew that removal of the mass was my preferred choice. Thank you.


Theresa 7 years ago

I just had surgery to remove the endometrioma from my abdominal wall 4 weeks ago. My problems started in August of 2006 with the emergency c-section of my daughter. A few months after the c-section, I noticed pain around the incision about a week before I would get my period and then sometimes terrible pain during my period.

In describing the pain, it was different at times. I would sometimes feel a stabbing pain, like my incision was opening up inside of me. And then it would burn and throb. If I turned a certain way, I'd feel the stabbing pain. Around my period time, the right side of my stomach would swell. It also would become so painful and radiate through my legs where my legs almost gave out because it was so bad.

I went to see my dr. thinking that maybe something wasn't healing right inside of me, but they couldn't find anything. They figured it was just scar tissue. As time went on, I could feel a tiny little lump if I pushed on the right side of my incision. As time progressed, so did the lump. I went to see my dr again because the lump was so large, that you can plainly see the lump on the right side of my stomach.

After MANY visits to numerous dr's with my mystery lump being called scar tissue, hernia, fibroid, a surgeon finally made the correct diagnosis. We had the surgery and sure enough, all endometriosis.

My recovery seems slow going, I am the type of person whose whole body swells from surgery so I had swelling issues. The pain has definitely gotten better, though I still feel burning. But that is only if I am doing too much. I think in 2 more weeks, everything should be fine as far wearing normal clothes again. I cant seem to have any pressure on the surgery site, but like I said, I think it'll be better in 2 weeks as that is when I remember wearing normal clothes again after my c-section.

My dr. did tell me that if I have more children, it most likely will come back and I'll have to have surgery again. We had already decided long ago that we weren't going to have anymore so hopefully, I will not have to worry about this ever again!


Abby 7 years ago

I just got back from the doctor today and found out I have endometriosis of the abdominal wall. I was having all the same symptoms as everyone else has listed. You could feel the lump through my stomach, I found it about 6 months ago. It started to hurt so the doctor ordered an ultrasound, then a CT, and then finally a biopsy. I will need surgery to remove it, I am just wondering what the odds are of it coming back. It is hard to find information about it because most of the time it is in the ovary's and other areas. A friend of mine has it and she has had two surgery's to remove it (it was in her ovary's), can't become pregnant and now they are telling her she needs a hysterectomy. Can this sort of stuff happen if it is in your abdominal wall?? Or is it just removed?


brongeyes 7 years ago

Hi Guys,

I am currently recovering from surgery for 2 small masses that I had removed caused by Abdominal Wall Endometriosis and also a Ventral Hernia. I had the procedure done only 6 days ago.

I wish I could have read all these comments before my procedure because I did not know what was happening to me.

I had a Cruciate section 3 years ago. This is a C section that goes across and then up to the belly button (like an upsidedown T). However you will only see a C section scar at the bottom because the skin was pulled over to hide the vertical scar.

6 months ago I started having off and on sharp pains. X ray, Cat Scan, Ultra sounds, Colonoscopy all showed nothing. I felt hard lumps when I pressed down on my abdomen and they hurt like hell when I touched them.

I could not take it anymore, hence my surgery I am glad I did it. Can anyone tell me how long does it take to heal? I had the masses removed via Laparoscopy and the Ventral Hernia repaired via C-section with mesh.


RVilleneuve profile image

RVilleneuve 7 years ago from Michigan

I also have "endo" since 1994. I have had 2 surgeries and 2 pregnancies since diagnosed. Right now I am just month to month some days are better than others. Thank you for this Hub.


Markita 7 years ago

I have had 3 c-sections 7,3, and 1 year ago. and i have been feeling pain along the cut line off and on. Lately it has been very very painful, even when I sneeze or wear jeans. i know its no a bladder infection or anything minor because it's right along the cut line. i believe it has something to do with my scare tissue. 3 years ago i had a hernia near or around my belly button removed during that c-section. Does anyone have any advice or diagnostic


Alison 7 years ago

I'm having a lap tomorrow for endo, I've had it since my teen years. This past week, I've had severe pain on my lower left side, radiating to my back and stomach. My GYN is doing the surgery so I don't think it will resolve the stomach pain. :( I'm scared but ready to have relief from this pain. My body is growing a new network on my left side of very inflamed blood vessels to grow the endo. Thanks for the success stories.


Megan Swogger 7 years ago

I just had surgery to remove endometriosis and it's been a week now, I am still having the same pain as before the surgery only now it's got the soreness from the surgery on top of it all. what can I do, my doctor doesn't seem to believe me. help


Belle 7 years ago

I had a C-section in 2000, noticed pain for about a yr before having first surgery to remove it in 2004. In 2007 noticed the pain was returning. Last yr the doctor told me to let him know when I was ready to have the 2nd surgery to remove what has returned. I just think that having multiple surgeries on the same location does not sound so safe. I wonder has anyone else tried alternative methods and how did it work for you? What happens if we don't get the surgery, does the mass just keep getting larger and larger til you can't take it.


Lib 7 years ago

Oh, i know that pain you had! I have been having it for 3 years now!! I cant even sit up without the sharp pain going through and making it so hard. My life has suffered because of it. I cant play with my child the way i need/want too. This is the worst thing in the world. I cant wait to get insurance and get this tumor out of me. My obgyn wanted to do a complete hystorectomy and i just am not ready for that. I'm 35 yrs old and i think that's a little exstream.


Haysh 7 years ago

I'm so glad I've found you all!! I thought I was going mad, as when I've explained the pain to people they look at me as if I must be exaggerating and a bit strange! My twins are eight in December and I have had this awful crippling pain since not long after they were born. At first I thought it was just pain that was normally there after a cesarean. My Gynecologist went in to have a look at it a few years ago when I had a laporoscopy and afterwards told me that it was scar tissue too big to take out and would have left a big crater in my stomach. Two or three years on and the lump is bigger and more painful than ever. It has gone from being unbearably painful cyclically, to being unbearable all the time now. I have an appointment to see the specialist again next week and I am also worried tha he will tell me I should have a hysterectomy as I am also 35 and am not ready to go there yet.


Tara 6 years ago

Hi all,

I was the first one to comment on this article and obviously I'm still having problems! I went ahead and had the second surgery. They removed the whole scar and then some. The orginal csection scar was about 5.5 inches and the new scar is over 8 inches. I knew w/in days that they had not removed it all b/c when that time of my cycle came there was the pain. So I am really struggling it is really having a negative effect on my life! Just a tip continuous birth control pills really help! Problem is I have a reaction to them. Tried 3 different kinds and have the same reaction grrr. So now they are saying a hysterocomy is my only option. We only have the one and would love another. I am trying to tough it out while we continue to try. I would like to try til Jan of 2011 then go ahead with the final surgery. The problem I'm having is how to deal w/ the pain. The gyn has finally relented and gave me hydrocodone 5. Not real strong but it does help. The only thing is he gave me 25 to last 4 months then says that's it I need to have the surgery. I don't think the drs understand how painful this is! I have Crohn's disease and have had to have 2 ft of my intestines removed, have severe arthritus, joint deteration and a few other health problems. Let me tell you this HURTS! It feels like someone is burning me with a hot poker. Have any of you notice that if you pull your knees up it helps UNTIL you try to straighten them out or get up and holy smokes the pain will take your breath away. Anyways, I kinda used yall to rant but wanted to let yall know about the birth control pills b/c it did help me a lot until I would have the reaction at around 6 weeks.


diane 6 years ago

hi, im gald i have read what everyone has said. i am having surgery for the same thing this thursday and i just wanted to ask you all if the surgery is difficult or a daunting experience? should i be scared of the surgery? does it take long to do?


Sandy 6 years ago

This forum has been very helpful to me. I believe I probably have the same as everyone else. My C-section was sixteen years ago. Then three years after that a difficult birth (vaginal). Since then I've had increasing pain in certain areas (right side pain, left side pain, across my scar pain, more prevalent is the pain around my belly button). Sometimes the pain is stabbing pains, sometimes burning and sometimes dull aches or almost like a pounding headache in my abdomen. I've gone to the doctors and all they want to do is either tell me to loose weight (I'm about 30lbs. overweight) or want to put me on an anti-depressent saying I have fibromyalgia. I just told my husband that I have lost faith in doctors. I think I need to find an internal doctor or demand my general to send me to a specialist instead of letting her pump me with more meds.


tracy 6 years ago

thanks for the advice on your page.After 2-3 years of increasing agony and a merry go round of gynae. and general surgeons seeing me i have finally have had my tennis ball sized mass diagnosed..yes, endometriosis.Is hormone or surgery treatment better.Am at presnt being talked out of surgery but i would just like to get rid of the pain and this damn lump.


shelle1212 6 years ago

I just had surgery two weeks ago to have my endo. removed. What is making me scared is that now my strech marks from being prego four years ago, are now getting swollen right under my endo cut. I went to the doc,because i was really swollen red and hot under my endo cut. He told me it was maybe the starting of a infection, well im taking cephalexin right now for it. I don't think this is normal, Its really hard under there,two hard in fact. did anyone else have these problems after surg??


Karima 6 years ago

I have abdominal endo.. I to had hernia surgery.. I am in so much pain... I am having surgery on Feb 5..2010.. I will let yoy guys know if it went successful or not..I have two kids but I want another baby... Pray and keep the faith GOD will make a way..


Chanda 6 years ago

I have also had this rare Abdominal Wall Endometriosis. It happened about two years after my C-section. I has all kinds of tests done until they realized what it was. So I had surgery and had it removed. Great- then 15 months later I had another one- this was unheard of so I was sent to a major medical hospital. They did an ultrasound and saw the mass- I was scheduled for surgery and my 2nd Abdominal Wall Endometriosis was removed. It is extremely rare for it to happen once let alone twice- and guess what? My pain is coming back so yet again I know without tests I have another one. It started a few months ago and for those of you who have had this- the pain is unlike any other pain- when you have had it - you know how it feels. I have never had the "normal" Endometriosis so this is just very strange. Other treatments that were discussed with me were taking medication that would put my body in a menaposal state.... um no thank you I am in my 30's or trying different kids of birth control. It is just very frustrating because the 1st and 2nd mass were in total different locations. This 3rd pain feels like it is by the 2nd so I am unsure if it was totally removed over 2 years ago. I hope this may help some people- I know I had to argue with a couple of doctors to explain to them what was going on with me.


Tara 6 years ago

Hey ladies, sorry to hear to many are suffering with this but it is comforting to know your not alone although sometimes it sure feels like it! I have posted (this makes 3 times). I was going to give an update. I was finally successful in getting pregnant and am now 13 weeks. I am so freaking out now b/c they said that it would not hurt during pregnancy and it does and seems to have gotten a little bigger! What is weird is when they put me on bcp it did not hurt when I skipped the placebo pills. The bcp's worked great for me except for I have a serious reaction to them. They tell me now the only option for me is to have a hystereomy. I'm 31 so I dread that but I also hate this pain!

Chanda your story sounds similar to mine. My section was in 2007 and the pain deveolped for me soon after. I have had 2 surgeries and it always comes back.

Has anyone else got pregnant with this and did you pain totally resolve immediately? The dr says maybe it will in the second trimester but really I think they haven't seen this and so they don't know what to expect. I am losing all faith in the drs and have been to see more than one.

Please feel free to email me at catgiggles@live.com just put abdominal endo as subject line so it doesn't get junked!


maria porro 6 years ago

im having my endo surgery the 25 of feb and i like to know how long the recovery will take. the found 2 of them and the are so painful.can anybody help me


Tara 6 years ago

Maria, what did they use to find your endo? Mri? How far apart are they? My first operation I only had an incision of about 3 inches and the recovery was not so bad (except my little one kicked it open a little and that hurt). My second operation sucked and the recovery was long. The incision was 8.5 inches (actually longer than the section scar). I think that since that was the 3rd time I had been cut on in 18 months is what made it so long. Along with during the second week post surgery I got some sort of virus. At the beginning of the 3rd week of recovery I was hospitalized and had to have a line inserted into the main artery of my neck b/c I was so dehydrated from the virus so I'm sure all that junk made the recovery seem much worse.

I am very interested to know what method they used to see yours. The drs here have yet to run a test they just cut on me and have yet to get it all.


maria porro 6 years ago

they did a ct scan


call me val 6 years ago

My story is so similar to yours. I had a C/S in July 2004, in September 2009 I found a painful lump approx. 4 cm above my C/S scar. I immediately consulted my OBGYN who sent me for US and CT, the mass was visable but no one knew what it was. Prior to my procedure October 20, 2009 I did my own research finding I had s/s of abdominal wall endometriosis. My OBGYN who has been in practice for about 11 years had never even heard of this. I was told immediately after my procedure that it was in fact abdominal wall endometriosis. Now for the unusually part, it has been approx. 5 months and I still have pain. I go Friday the 12th of March for a Diagnostic Laproscopy to see where the pain is coming from. I am so uncomfortable, it is a sharp pinching sometimes shooting pain (mostly in my right) pelvis. So my question is HAS ANYONE FOUND OUT THEY HAVE ENDOMETRIOSIS after they have ABDOMINAL WALL ENDO?


Chimera Luna 6 years ago

I have all of these symptoms as well and my obgyn has been stabbing my scar tissue with needles of steroids which has made the mass grow to ths size of a golf ball. My life is unbearable with it and i often think of depsparate measures to escape this pain. He says i have an entangled nerve from scar tissue but i know its abdominal endo just from what ive read here, all my symptoms are the same and coincide with my cycles so i will try the continuous bc pill taking and see if it helps if it does ill let you all know i have had this pain for a year and yes as i have left it there it has just gotten bigger and is seeming to spread ie; new lump beside it rectal/blader symptoms pain down left leg which coincidentally the golf ball sized lump is above new vien growth around affected area and in leg on same side of body AND my left leg is swollen compared to the other one it feels like the endo is literally spreading down my leg....idk if this is possible or if what ive said helps ill try the bc nonstop and let you all know if it helps im only 28 and i feel like my life is over and i have no hope of working or excersizing without the debilatating pains.


elisa 6 years ago

I have also had an abdominal wall endometrioma, I had surgery 2 years ago to remove it after what seemed like a hundred tests and lots of differing diagnosis, It was removed by a general surgeon, and was found to be an endometrioma at histology. I know now that if an endometrioma is suspected, it should be removed by someone with endo experience.

2 years on, I am back to square one with my 2nd rarity!! I know it is rare to get one, but it seems that it is not unheard of to get another, I am waiting it out at the moment, it is painful from the middle of my period til 10 days after, then dissappears until my next period, the pain is horrible, but I am phobic of hospitals so am putting of seeing the gyne again for the time being.

For everyone that is going through this, I wish you all well, the surgery is not too bad (I opted to have mine removed under local anaesthetic!! as I am scared of those too!! lol) the recovery was fine, just a few days of painkillers.

I find that I get horrendous PMT as another gift of endo, my gyne recommended Agnus castus which is fabulous, I tried the hormonal treatments only mildly helpful and more than a little scarey!!


julie 6 years ago

Hi I have had the same pains you are experiencing.However I have had scans, laperoscopy and key hole but nothing has showed up. Do you think they could have missed it?


Andi 6 years ago

This has helped SO much, to hear others describe pain I've had for 6 years makes me realize I'm not crazy!!!. I had a c-section in 2001, in 2004 I started having severe pelvic pain. During scheduled laparoscopy, dr found chocolate cyst had consumed left ovary, multiple adhesions, and endometriosis in abdominal muscle. She had to cut over c section scar, remove ovary, burnt everything off, and remove from muscle. Had relief until 2006, then another lap to remove more adhesions, then April 2009 another lap, more adhesions, uteral ablasion and tubal on remaining ovary. Felt normal until March 2010, started bleeding, and pain for 4 days. April 9, period again, heavy, and massive pain. I now have a mass in abdominal wall, right ovary has adhered to uterus, uterus enlarged and full of endo. Started period and Depot Lupron injections yesterday. Pain is debilitating. The only way to remove cells from muscle is to remove muscle. So we're doing depot lupron to stop estrogen, stop bleeding, and hopefully shrink mass enough to have robotic hysterectomy in about 6 months. Trying to avoid cutting that muscle again. I pray this works, it's going to be a long 6 months. Best of luck to all of you suffering, no one knows unless they've been there how horrible it is.


Kelsey 6 years ago

I've read through everyone's comments and need to share something very important. Many have gynecologists that are suggesting that the only way to bs the recurrence of the extrapelvic endometriomas is through a hysterectomy. However, if this is te case, make sure it is total (removal of both ovaries). I say this because I was diagnosed with the endometrioma; however, the cause of mine was transplanting of the endometrial cells during an actual hysterectomy in 2004. I've never had a C-section, only two normal vaginal deliveries. In addition, someone mentioned the importance of working with a general surgeon that has experience with this- many gynecologists assume that because there is endometrial tissue in the mass it must be a direct result of endometriosis, which removing your uterus and ovaries can help cure. In my case, the endometrioma didn't present until 2 years ago- 3 years after a hysterectomy due to issues having nothing to do with endometriosis. I do still have on ovary, and it's presence causes enough hormone release that the tissue transplanted during my hysterectomy grows monthly. If both ovaries had been removed, perhaps the tissue would have been transplanted, but not "fed" by remaining hormonal sources. Of course, I would have gone into menopause at age 34, so I guess there are trade-offs.


Lib 6 years ago

I am here to follow up -

I haven't had surgery because I haven't had insurannce.

I just now got approved for insurance.

I am in so much pain, coughing, sneezing, laughing, walking, bending, ect, ect, ect just makes life hard to function.

I hope the surgery is something that will make me feel a lot better for at least 5 yrs. I have a kid to raise all by myself since my husband passed.

We should start a group of all of us ladies.

Just wanted to follow up on me and let it be known, I haven't had anything done, but have LOTS more pain.


Jessica 6 years ago

Hi Tara / All,

My child was born 4 1/2 yrs ago via c-section. I have excutiating sharp knife-like pain in my tummy, which after MANY tests was diagnosed to be endometriosis in my abdominal wall. Currently it is 6.6cm x 4cm as of last test. I had a laproscapy 3 months ago which removed endo from my pelvic area but they did not touch the abdo section.

After a consultation with a surgeon, he told me if they perform surgery on my abdominal wall, they will need to remove the muscle for that wall and put some mesh there in place to prevent a hernia. They said if i ever get pregnant in the future after the operation then i will definitely get a hernia.

I am only 23 with 1 child, i want to have more children down the line. But in the mean time I am in so much pain that i cant function properly. It is currently effecting most areas of my life. I am on strong pain killers, and they did suggest trying a contraceptive implant to try to shrink the growth, but in the mean time how do i go on?

Does any one have any ideas/ suggestions for me? I am the primary carer for my child so it is hard.

Please email me:

jessica_parker10@hotmail.com


Thomas 6 years ago

My name is Thomas from India. I just came across this forum. My wife is 36 yrs old and we have been blessed with 3 kids. After her 2nd delivery (we got twins in the year 2001) which was also a C section, she developed the symptoms of endometriosis about a year and a half later on the anterior abdominal wall near the umbilicus. This I was told was because of improper D&C post her 2nd C section delivery. She underwent hormone treatment for the same for about a year and the condition only worsened. She then had to undergo surgery in the year 2004 to cut open her stomach and remove the tissues which the doctor claimed to be pretty spread out and the operation lasted for 3 hrs. For about a year and a half thereafter she was allright and then the pain started again. She really suffers severe pain for 25 days in a month. We have consulted 2 other doctors as well. They claim that there is no cure and if needed the same can be operated again with no gurantees whatsoever. (This time the suggession is for Laparoscopy). We are at a loss as to what to do and its really tough to watch helpless as my wife suffers. Maybe hysterectomy is the solution along with the removal of the ovaries.. But then that's the last option we would like to consider.


Tara 6 years ago

I too am just checking back. I have nine weeks left in the pregnancy. My section is scheduled for Aug 13th and they will try to remove entire mass one last time (this will be the 3rd attempt) after which if he reaccurs I will have a total hyster (both ovaries will go and no hrt). I am hopeful that they are sucessful removing it this time! I agree on starting a group. There are not many folks who really know the type of pain we are going through. This is not the same as having endometriosis in your pelvic cavity (although I'm not trying to deminish the amount of pain involved in that) but with it in the abdominal wall when it sheds it is has less area go to into so the pain is much more extreme. Praying we all find relief from this junk!


Kelly 6 years ago

I too have experienced these discomforts. I have had 2 c-sections my last 5 years ago. I have a large tender lump in the middle of my scar. I do also have some discolorations along my scar line (almost looks bruised) I have one bruised spot that bleeds when I have my monthly. I have pain from 7-10 days during and after my period..Every month I have to prepare myself for the pain. I am finally making an appt but was terrified that it was something else..thank you all for your input. It makes me feel better that i'm not the only one...Does anyone else have these spots?


Matias 6 years ago

My wife had surgery 1 week ago and aparently everything was taken out. We got in thinking it was a granuloma but after the biopsy we got to know it was endometriosis in the abdominal wall...does anybody know if are there any studies about the risks of getting in something malign...i read that it is rare but there are some cases...any studies to recommend? Thanks a lot...you page has been very helpful for us to know that it is much more common than what we originally thought. Thx again!


Andrea 6 years ago

After being misdiagnosed with hernia back in April, and having cat scans, mris and ultrasounds, I was finally diagnosed with having endometriosis (softball sized) on my abdominal wall and rectus muscle. Unforuntately for me, if hormonal treatments do no work, the option of surgery will leave me without any abdominal muscle or wall on my right side, only mesh ... basically leaving me handicapped. I have been told this by 3 surgeons and am currently working with Sloan Kettering in NYC. I have had 2 csections with my last being 16 years ago. Ever since then, I was always weaker on my right side but have always had normal periods, every 28 days, and no pain at all ... every once in a while I would get jolts of pain, or an intense itching but over the years the doctors could not find anything. It wasn't until back in April when I mentioned to my doctor I feel a lump that she thought it was hernia and this entire ordeal started. I am freaking out ....... I am waiting to see a Reproductive Endochronologist - I am 43 years old. I think I am different then most of you but feels great to see others in similar situations although I feel for each and everyone of you. Thanks for letting me talk ..... Andrea


Janna 6 years ago

I can't believe I found this site! I have been struggling with this mystery pain for years! I was diagnosed with endo about two years after my last c-section and had lap. surgery in which it was removed. For a year after that, I thought I was cured. No pain whatsoever... and then it came back. My gyn treated me like the pain was in my head, even though she was the one that did my surgery! Another year of pain later, we moved to a different state and I began searching for a new doctor. I went to a gyn I didn't care for and decided that wasn't good enough, so I did some research online and found a reputable endo doctor known for pioneering excision surgery. He was in another state but I thought it would be worth the drive and expense to have this thing done and done right. He did a supracervical hysterectomy, which means he removed just the uterus vaginally with laparascopic assistance. Still had my cervix, both ovaries and tubes. He also did excision on any endo he saw, but he said there was not very much. But that pain does not necessarily coincide with the amount of endo a woman has. Some women have a lot and feel less pain than someone with a little. It varies with the woman. Also he says that I have polycystic ovaries, but they are not known to cause pain so he left them alone. At any rate, a month after the surgery and here comes the pain again. Doesn't matter that I don't have a period anymore, I still have my ovaries, so I still have a cycle. I started looking for another local gyn and found my current doctor. Last year, she did an oophorectomy (sp), basically removed my right ovary and fallopian tube because of the cysts and the pain is mostly on the right side. A month after that, the pain is back again. I have stayed with this doctor because she genuinely seems to want to fix me and she doesn't treat me like a junkie when I ask for pain meds. During my annual exam this year she asked again about the pain and I told her I am still suffering through it. She ordered a ct scan to check for hernia and it showed kidney stones and nothing else. Urologist said that they would not cause the type of pain I described and they weren't moving so shouldn't be painful at all. Finally, she just recently referred me to a general surgeon who felt my abdomen where the pain is and said he feels a mass there near the c-section scar. He called the radiologist and asked him to look closer at the ct scan because the ct report generally looks at your internal organs. The radiologist said that yes, on closer inspection, he can in fact see something there and suggests I have an mri done. General surgeon says it is probably abdominal wall endo, orders the mri, and says he will probably need to operate to remove it. I am in shock that someone finally knows what's wrong with me! I've researched this for years and never come across the term "abdominal wall" endo. I didn't know to search for it and have never seen anyone mention it on other endo forums. It's obvious now that that's what I have and although not happy that anyone else is having to deal with it, at least happy that I am not alone. This horrible pain is NOT in my head! While I'm looking forward to being able to sneeze, cough, laugh, or on some days just breathe without having pain, I am nervous about the surgery. All my other surgeries have been laparascopic except for the c-sections (which apparently are responsible for this in the first place!) But I think it's worth a shot because I just can't live like this anymore!

I do have a question about the surgery for anyone that has had it... Do they just remove the adhesions, or do they also remove skin along with it? I don't want to gross anyone out, but I have a little bit of a fat "pouch" that overhangs my c-section scar. I have lost a lot of weight over the last few years and it left a lot of extra skin there. Has anyone had a tummy tuck along with this surgery and is it possible that insurance will pay for it?

Thank you all so much for sharing your stories and getting this out there. I am so glad I found this page!


1%er 6 years ago

For two years I suffered with what felt like burning,ripping of flesh just below my belly button. It wasn't until six months ago that I couldn't take it and went to the dr. I had songrams,cat scans, mri all revealied nothingbut two pea-sized fibroids and a cyst, nothing to explain the growing mass that could be felt during pelvic exam. Went to gi doctor had 2nd colonoscopy in 2 years...that's when he said i think its endometriosis i dont know why your gyno doesn't. Gyno stated it was very rare but could happen then put me on loseasonique to ward off evil period which came despite the bcp. She raised dosage I bled more to the point that I ended up in er. General surgeon suggested laproscopic surgery which I had 3 weeks ago. At post op he said he removed quite a bit but couldn't get it all. Now i am waiting for my period to see how it will be. The burning pain is gone but now i have a belly bump that is bigger and protrudes.


Anna P. 6 years ago

Hello all,

I am so glad to have found this blog and would like to share my story.

I have had 3 c-sections my last one was in 2001. About 6 months after my last child's birth I started to have a pain on my left side between the bellybutton and my hip which hurt when I touched it. I went to the doctor who refered me to a gynocologist and the diagnosis was: scar tissue from the C-section and or a pulled muscle. Over time the pain continued and it got worse. Once again I go to my doctor who this time did an ultrasound - nothing on the ultrasound. Over the next 8 years the pain became progressively worse and it was constant to the point that I had to take painkillers to function, I also started to feel very unconfortable and bloated. About 2 years ago I felt a lump on the site the hurt but thought it was nothing because at every yearly physical the diagnosis was always the same -scar tissue from my 3 C-sections. Everything came to a critical mass when in Nov 2009 my period (which has been pretty regular) went into chaos. I naturally consulted my doctor and once again off to the ultrasound lab I went. The results this time were entirely different. My ovaries and uterus were pretty much the same as my last ultrasound but now they saw a mass growing in the subcutenous layer of my abdominal wall the size of about a golf ball! The same lump that I had been feeling for over 2 years. Ultrasound could not determine what it was suggested MRI.

I took 4 months to get an MRI (I live in Canada), 4 months of worry and anxiety. MRI comes back inconclusive suggested I consult a surgeon (why not go directly from Ultrasound to surgeon still baffles me), 2 months later (6 months after the ultrasound) I finally see a surgeon whose first words out of his mouth are lipoma or sarcoma!!! Needless to say I was stressed to the max for having to wait 6 months to come to this point now I am being told I might have cancer! I lost it at that point. Especially after he tells me that his waiting list is 6 to 9 weeks. Dr. Surgeon seeing how upset I was, suggested that I not wait for him but that he knew another surgeon who is new to the area (experienced but just moved here) and is building up his practice so he should be available within a week at the most. Naturally, I grabbed the opportunity with both hands. Met with the surgeon 2 days later and after reviewing my MRI in front of me he was the first to use the term Endometrioma. On June 4, 2010 I had the surgery, two weeks later I got the results of the biopsy and it was indeed Endometrioma. The speculation is that I got it when I had the amniocentesis from my 3rd child done. I am happy to report that I am now pain free and pray and home that it will stay like that. I just wish I had found this site earlier but I did not know that what I had was Endometrioma. Thanks for reading my story and please pass it on so that other women who have a mysterious pain can speak to their doctors and be properly diagnosed.


jana 6 years ago

I had three c-sections my last one being in 2004. I just had surgery on Monday to have an abdominal wall endometrioma removed. I had felt the painful lump for about a year and a half and finally talked to my dr about it and she had me get an ultrasound done and that's when my ob/gyn decided to do surgery. I am not supposed to lift anything heavier than 10 lbs for 6 weeks.I really thought it was going to be easier.


RENU JAGGI 6 years ago

I HAD SURGERY ONE MONTH AGO ,MESH WAS PUT,BUT I AM FINDING/FEELING THAT LUMP IS THERE . NO PAIN . HOW MUCH TIME WILL IT TAKE TO CURE THE LUMP. PLEASE SUGGEST PRECAUTION. PLEASE LET ME KNOW WHETHRE MY SURGERY IS SUCCESSFUL ?

EMAIL-jaggi11@hotmail.com


Charlie 6 years ago

Has anyone on here had trouble with diagnosing nerve issues or endo?

Did any of you have nerve ablatement along with the excision?

My wife has the same pain all of you describe but is breastfeeding so no periods to determine if the pain is cyclical. She has a small lump, but the surgeon cannot tell if it is nerve or Endometrioma.

She is having the lump excised in 6 weeks, and they are going to cut (ablate) the nerve endings in the area too. If any of you have any experience with that, please post!


Tara 6 years ago

Had my baby girl a week ago. Dr. removed the mass again but he said it was not discolored just the same color as the other scar tissue. However it could be inside the scar tissue I guess. I guess we will see in a few weeks when af returns. He said he did feel a knot inside my muscles but that he was not going to remove part of my muscle. I am having more pain in that area than the other but I keep reminding myself it is prolly from that being cut out. I so pray that it worked this time!!


Jen 6 years ago

I am also experiencing the same symptoms and severe pain in my abdomen and back. The surgeon did suggest that the mass could be abdominal wall endo. My surgery is scheduled for tomorrow. I am a little aprehensive about the surgery and hope that this only has to be performed once! I am not sure what the recovery time is for this particular procedure but I will update everyone soon. Good luck to all of u, I feel your pain!


palsm 6 years ago

Hi Ladies

Thank God that I have found this site. I am 36 years old and recently my OBGYN has diagnosed me with endometriosis on the c-section scar. My daughter was born in 2002 in a C-section delivery. I went on BCP after my daughter was 10 months old and continued to take pills until 2008. I stopped taking pills by Dec 2008 and after a few months I started to have terrible menstrual cramps. The cramps and pain began to develop horrible after each month. I reported my PCP about severe abdominal pain in Oct 2009. My abdominal pain continued for another 5-6 days even after bleeding stopped (usually I have 5 days of bleeding) and made my life miserable. I was not able to run/swim or even feel normal during those days. Shooting pains keep coming especially from the C-section scar. The scar felt very hard from the top of the skin. My PCP ordered for abdominal and internal ultrasound and I did those tests as per the reports everything looked normal. Meanwhile we started to plan for another child. As my periods kept hurting I went to OB GYN and after another ultrasound and Biopsy it was diagnosed that I have been suffering with endometriosis on the c- section scar. A mass of 5 cm x 4.3 cm diameter tissues has been detected inside the scar and my doctor has suggested surgery to take this out. Now the confusion has started – to have second baby first and at the time of c- section they will take out the mass or to get the mass operated first and then try for second baby. As I am already 36 and my daughter is also 8 years old ...seems time is running out of hand. That too no one is sure if things might get complicated at the time of delivery or not!

We tried for 3 months to conceive but no luck yet. Ladies, please suggest. Doctors say its up to me either can be done but they can’t say how difficult the c-section delivery and removing endo at the same time could be.


palsm 6 years ago

Hi Ladies

Thank God that I have found this site. I am 36 years old and recently my OBGYN has diagnosed me with endometriosis on the c-section scar. My daughter was born in 2002 in a C-section delivery. I went on BCP after my daughter was 10 months old and continued to take pills until 2008. I stopped taking pills by Dec 2008 and after a few months I started to have terrible menstrual cramps. The cramps and pain began to develop horrible after each month. I reported my PCP about severe abdominal pain in Oct 2009. My abdominal pain continued for another 5-6 days even after bleeding stopped (usually I have 5 days of bleeding) and made my life miserable. I was not able to run/swim or even feel normal during those days. Shooting pains keep coming especially from the C-section scar. The scar felt very hard from the top of the skin. My PCP ordered for abdominal and internal ultrasound and I did those tests as per the reports everything looked normal. Meanwhile we started to plan for another child. As my periods kept hurting I went to OB GYN and after another ultrasound and Biopsy it was diagnosed that I have been suffering with endometriosis on the c- section scar. A mass of 5 cm x 4.3 cm diameter tissues has been detected inside the scar and my doctor has suggested surgery to take this out. Now the confusion has started – to have second baby first and at the time of c- section they will take out the mass or to get the mass operated first and then try for second baby. As I am already 36 and my daughter is also 8 years old ...seems time is running out of hand. That too no one is sure if things might get complicated at the time of delivery or not!

We tried for 3 months to conceive but no luck yet. Ladies, please suggest. Doctors say its up to me either can be done but they can’t say how difficult the c-section delivery and removing endo at the same time could be.


Palsm 6 years ago

Hi Ladies

I have read your posts in Hubpages.com and It would be great if you can share your exp of pregnancy with endo with me.

I am 36 years old and recently my OBGYN has diagnosed me with endometriosis on the c-section scar. My daughter was born in 2002 in a C-section delivery. I went on BCP after my daughter was 10 months old and continued to take pills until 2008. I stopped taking pills by Dec 2008 and after a few months I started to have terrible menstrual cramps. The cramps and pain began to develop horrible after each month. I reported my PCP about severe abdominal pain in Oct 2009. My abdominal pain continued for another 5-6 days even after bleeding stopped (usually I have 5 days of bleeding) and made my life miserable. I was not able to run/swim or even feel normal during those days. Shooting pains keep coming especially from the C-section scar. The scar felt very hard from the top of the skin. My PCP ordered for abdominal and internal ultrasound and I did those tests as per the reports everything looked normal. Meanwhile we started to plan for another child. As my periods kept hurting I went to OB GYN and after another ultrasound and Biopsy it was diagnosed that I have been suffering with endometriosis on the c- section scar. A mass of 5 cm x 4.3 cm diameter tissues has been detected inside the scar and my doctor has suggested surgery to take this out. Now the confusion has started – to have second baby first and at the time of c- section they will take out the mass or to get the mass operated first and then try for second baby. As I am already 36 and my daughter is also 8 years old ...seems time is running out of hand. That too no one is sure if things might get complicated at the time of delivery or not!


Katherine 6 years ago

I had an emergency c section Jan 2004. One year later I had a sharp pain near the scar. Four years I suffered until it was confirmed to be endometriosis. I just had the lump removed from the c section scar. Just before I went under I heard the Dr. tell the others that they will just remove the lump but not the rest of the endo. It has been one week and the burning pain is still there and it is puffy. Can anyone tell me how long it hurts for after surgery. Is it normal it still hurts. Thanks you for all your help.


Alicia 5 years ago

I have never had a c-section but have had two kids within a 3yr period. After my second turned one I went in for laproscopic surgery and was diagnosed with endometriosis. It was 4inchs by 4inches. It was very painful along with cysts and felt like I was having another period with no blood and extreme pressure in my abdomen. It was awful. I had slow annoying pains before that but at first sign of this extreme pain, I brought myself to the doc and got fixed before it happened again. Pain is very inconsistent with endometriosis and doesn't happen all the time.

To Katherine. I would go back in and get the endo removed it can cause you to become infertile. It should take about six weeks full recovery. First sign of infection especially just a little puss coming out of the incision you should go in. I made the big mistake not going in and ended up in worst pain.


Jen 5 years ago

Hi All, I have a very similar story, it has been almost 2 years since I had 1 large and 2 smaller masses of endo removed from the space between my abdominal wall and c-section scar. I had 2 c-sections, 1 in 2000 and another in 2002. My "new" scar is much wider than the original c-section due to the size and placement of the masses. At the same time they removed the masses, the Dr performed a laproscopic hysterectomy, but left my ovaries (I was only 31 at the time of surgery). For 5 months after surgery I suffered through Lupron injections to minimize the chances of re-occurrence. I have recently begun feeling twinges of the old pain.

For me, the most frustrating part is the horror of pain that many doctors could not diagnose. The OB who delivered my daughter in 2002 actually said "this is not my problem" in reference to my pain after my 4th or 5th visit complaining of pain. He suggested I go to a gastro doc. It took several more dr to decide it might be endo and it was not until after the path analysis came back that we knew for sure what it was endo. I am furious that I was made to feel "crazy" and that my endo was left untreated for several years to grow out of control. I hope more women read this thread and understand that the pain is real and they need to get treatment. I hope someday that we know what causes this, it is my feeling that perhaps my c-section was not done with the proper care, but who's to say?


Katherine 5 years ago

Thanks Alicia for your post. I had the endo. removed from my c section scar and now I am on Lupron for 6 months because Dr. said there is too much endo to operate further on and is trying to shrink it with Lupron. I have been off work for 6 months now. I try to remain positive but some days end up feeling sick of the pain. It is slowly getting better and today I enjoyed a walk around the block. Crazy that this is considered a big success considering I once was a runner. As for the fertility I don't worry about that because I am finished having children. At this point I am looking into having my ovaries removed if that would end this endo business. I am just at the researching point. Anyways thanks for your input and I hope you are pain free these days.


cshell 5 years ago

OMG I feel for all of you gals! I have been dealing with the same thing for the last 3 years, Ive had 2 c/s and the first was awsome the second I had infections and the same with all of you the pain during mens and Ive seen countless drs whom all told me it was the achs and pains of having a kid and it was just scar tissue tugging on an organ. Basically deal with it. But the bulge has only gotten bigger more painful and more frequent if I stand up to fast, walking and will come with out warning. It is the worst and I developed herniated discs in L4L5 during my last pregancy also (my son was a mouse) and have had issues with that but I have never been able to do a sit up so Im not even close as to as mobile and active as before baby due to the pain and/or work out for any period of time so I haven't lost my baby weight from the last which I know isint healthy for any reason im 45 pounds overweight still.. So finally I saw a dr yesterday who said he has been seeing allot of women come in for hernias that are infact this endo where the uteris has grown in to the abdominal muscles. And the fact that hernias arnt so tender to the touch the bulge and all areound it is rediculously painful! All from csection why arnt more doctors educated in this!

My husband and I wanted 1more but im freaken cause the pain is so bad the thought of it expanding I dont see how I could cope since this has woken me up at night from moving in my sleep. Has anyone had similar? Has anyone gotten pregant with similar circumstances. Or has anyone had the surgery and gotten pregant? If so how long did you waite? Im all for having all girl parts removed so I dont have the pain anymore but I was really hopeing for that 1more? Also has anyone been able to do sit ups after surgery? I saw some had the muscles removed yikes! I want to get to my healthy weight and get more active again but with out the tummy muscles and pain it makes it incredibly hard!

Also I saw some gals had bad or multiple sergeries, im not someone who is educated in finding the right doctor what are some things I should do to make sure im getting the right doc that will do it right the first time?

Also has anyone found they retain more water then before? I retain and uncanny amount of water in general now and I gain about 10 - 12 pounds during mens time?


Lib 5 years ago

I'm back and updating....

I got the surgery done on November 16, 2010 and the surgeon removed my tumor ( being the size of a grapefruit). I am floored it was that big, but I'm recovering with some pain. I move around, sweep my floor a little, but get so weak. I'm having sharp pains when I have a BM ( sorry if TMI), so do you think it's normal?

I go back to see the surgeon on December 2, 2010 and can't wait to hear what he says.

I did call on call dr and he was like, ooh, I heard about you and how the drs can't believe how you lived. I was like, omg, that's kind of freaky hearing a dr say that.

I have a kid and have to live.

Anyone can give me pointers please,, I did read alls posts, but if anything new, share. :)


Bwhop 5 years ago

I am happy to have found this discussion. My story is very similar to a couple of yours above. I underwent 3 previous C-sections in 1999, 2001 and 2008. My "hot spot" as I referred to it started between my second and third child. My pain was localized to my lower left quadrant and started in 2006. After multiple pelvic ultrasounds that came back normal my GYN diagnosed scar tissue from my section surgery that did not heal properly. When I was pregnant the last time the pain continued throughout my entire pregnancy and again all ultrasounds, etc came back fine. I figured this was just something I was just going to have to live with. Approximately 1 year ago I felt a mass in my lower abdominal area which also gets feverish to to touch around the time of my period. I was nit overly concerned as I have been told for some many years it was scar tissue. 2 weeks ago my pain became so bad I was unable to get from sit to stand without support. I sall my PCP the same day who ordered a CT of my pelvis and abdominal area for the next day. Results showed a well defined mass on the anterior abdominal wall that measures approximately 1 1/2 inch by same. Was referred to a general surgeon who is removing the mass today. He believes based on my symptoms and imagining that I have an endmitrioma of the abdominal wall. What concerns him is I also have a 19mm spot on my left ovary....and there are "feelers" coming from the mass on my abdominal wall. Has anyone ever had this told to them and I also noticed noone mentioning fever in the sight of their pain and this is one of my chief complaints along with the severe pain. Any answers or info someone could share would ease my mind. I am only 30 years old and I'm very scared.

Thank you

Brandy


PATRICE FERGUSON 5 years ago

Well since endometriosis is triggered by ovulation one may consider a birth control that greatly reduces mentstral cycles and ovulation. Depovera after a few shots can eliminate menses all together that would bring you great releif. For some women that are near menapause a removal of ovaries is an option to. I can relate to your pain. I had 2 c-sections and fibroids that grew like crazy in the ten years after my last child was delivered by c-section not only did they fill up my uterus to the point my menstral tissue was spilling into my abdomon from the falopian tubes and encrusting every inch of my abdomimal wall and gluing me together inside. With every period that lasted almost 20 days. I had a hystorectomy that lasted over 2 hours in surgery just to get ovaries and uturus out and carve some of the endo tissue out. Doc said he had never seen such a severe case of it in his life. Although I don't have pain I am still looking like I am six months pregnant and my kidneys and liver and other organs are still well festooned with endotissues that he could not remove. These caused scarring and often movement and bending are painful because the pumps tend to scrape agaisnt the lining of fascia covering over the abdomimnal wall. Somethings you just have to learn to live with. And thru all that I did have ovarian cancer but it was found early and removed.. No more issues with that..


Becko 5 years ago

Thank you so much for posting this as there is so little info about abdominal wall endometriosis. And like others, I have sometimes felt crazy ugh and babyish about it! I had a C-section in 12/04 sparking a string of surgeries for me totaling 6 including gall bladder, hernia, ovarian cysts, hysterectomy, and repair of my sphincter muscle from a 4th degree episiotomy. I have experienced like many of you a strange pain that comes and goes in conjunction with my ovulation ( I finally figured out), but now it lingers a little longer. I would try anything wearing diff shoes etc, wearing a girdle anything to help it. I have been bad about charting it, because after a hyster I don't have a period anymore etc. My hysterectomy was performed, because I had yet another rare thing, adenomyosis, which is endometriosis of the uterus- My uterus was 8 times normal size and globular ick layered w/ adenomyosis!- So that had to come out, but the Gyno left my ovaries as I was only 34. So fast fwd to 2010, and I've had a year of this strange pain. I was sure it was a hernia as was my dr, and I was planning to have surgery this month. The surgeon then thought it was an incisional hernia or a granuloma from scar tissue. But the general surgeon called and said no it is a lump likely an endometrioma given my history of obstetric surgery sigh. The weird thing is it showed up 4 yrs ago in a ct scan, but I was never told as it was insignificant at the time. I guess it was so small to be an issue, and I didn't yet have pain from it. Now it has grown but not much which is a good sign the dr said. I go tomorrow for an ultrasound needle biopsy. Have any of you had this done :(? I have to admit even after all these surgeries and countless other procedures/ diagnostic tests over the yrs , I am nervous about "This"!-- They said I may have to be sedated and may get nauseous? Is this true? ugh. Having so many surgeries, my surgeon is hesitant to do surgery again I think. I am not sure what to do as I am fearful of adhesions and that it might grow back w/ a vengeance worse than before especially after reading your accounts....LIke the writer of the article, I seemed to be blessed w/ rare female things; I also had a hymenectomy before I married- !- -gee!-- Anyway the pain is really causing me to miss out some on life, and I have to put my hand on my lower right abdomen near my pubic bone sometimes. It is getting more uncomfortable to button jeans etc. After it subsides each time , it is then tender and sore there. Then I may have a week of good time, and then it starts all over again :(-I have to sleep on my side in a certain position to keep it at bay through the night. Now all I feel is that lump icky feeling! Thank you for letting me share my story and for any advice you can provide--


Susan 5 years ago

My story is a bit different. I was daignosed with endometriosis before having children. I had two boys both vaginally. Several years after my youngest's birth I began developing random spells of extreme abdominal swelling and pain. I did have a laproscope prior to becoming pregnant with my first son in 1999. Finally in June of 2006, the pain and swelling sent me to the ER. The ER doctors said they couldn't find anything but were going to admit for observation.

Over the next four days, the swelling and pain increased to the point that I looked like i was at least six months pregnant and my abdomen hurt so badly I couldn't even keep a sheet on it. In addition to the swelling and pain, I developed a fever that continued to increase and my blood pressure was dropping to the point that I literally thought I was dieing.

I finally asked my nurse if I had the right to ask for a surgical consultation that I thought I was dieing. The nurse was extremely supportive and within 15 minutes I had 4 nurses each of his superiors in my room and then a surgeon walked in....he yelled why isn't this patient prepped for surgery? She has had blood in her abdomen for 4 days. It was a ruptured endometrioma (a cyst filled with endometriosis so when it ruptured it continued to bleed). I ended up in surgery for 5 hours, with the diagnosis of peritonitis, an infection of the entire abdomen caused by the blood from the endometrioma. For about 2 years I did great....but the last 2-3 years have been a constant battle. Not knowing when my belly is going to swell and cause extreme pain.

I'm so over it, I just don't know what to do!

Susan


heather 5 years ago

I am so glad I found this site. My story is a little different. I haven't had a c-section, both my deliveries were vaginal, even my twins in 2000. Since having my twins my periods were horrible and painful, sometimes lasting 20 days. Finally in July 2009 I had a supercervical hysterectomy - only the uterus was removed, I retained my cervix and my ovaries. However, I continued to have a period. Dr. said it was because they must have left some endometrial tissue and the hormones were responding to it. Said nothing could be done but wait for menopause (I was 38). In June 2010 while we were on vacation, I experience severe sharp pain in my right lower quadrant. I went to the ER and an ultrasound revealed a large complex ovarian cyst, however it also revealed a mass on my right kidney. I was told to follow up with my regular Dr. once I returned home from vacation the next day. 2 months later in Aug 2010, I underwent a partial nephrectomy to remove a handball sized tumor from my right kidney. A week later the path report came back that it was a rare type of kidney cancer. So the past 4 months I have been recovering from that surgery but I continued to have pain in my right lower pelvic area, especially when my bladder was full. Ultrasound revealed that my ovaries were fine, no cysts. In Nov 2010, I had a CT scan and a mass was found in my lower abdomen. We were afraid that the cancer had spread. I had another Ultrasound to confirm the mass but still the Dr's couldn't pinpoint where or what it was. 4 days ago I underwent laproscopic exploratory abdominal surgery and they removed an endometrioma that was tethered to my abdominal wall. I had never heard of such a thing and was told by the Dr. that it was rare. I am tired of getting rare and "special" things. It's almost a joke in my family that I am the one to get the rare things, we have to laugh about it. All that to say, I am hoping this takes care of the pain I had been having and that I am very relieved it wasn't more of the cancer. I will have to go in ever 3-6 months for scans to follow up with that. At this point I just want to heal and get on with my life.


lynda 5 years ago

i.v had endo for 21yrs after my c section and the pain is realy bad i.v just been put through an early menapause in the hope that it wil shrink the endo and hopfuly be able to get pregnant as i.v been tryin for a baby for the last 21yrs does any one know if this would work for me has any got pregnant havin this kind of treatment


Becko 5 years ago

UPDATE: -- I had my abdominal biopsy as I mentioned and I got the results yesterday- It is actually a very rare tumor called a desmoid :( it is cancer but doesn't spread etc from what I Understand-- still trying to wrap my head around it. I was certain as were my doctors that it would be an endometrioma-- the bright side is i will get a tummy tuck out of the deal to get it removed : ) that's the only bright side i see, becaue like the endometriomas, these tumors grow back :( i am feeling discouraged but hopeful at the same time-- good luck to you all!!


Helen 5 years ago

Wow - am I glad to find you all. I have a history of endometriosis spread in a number of areas which I had over the years 4 surgerys to remove. After having my two girls by C-section due to complications, at 35 years old I finally had a hysterectomy last year during which they also had to remove my left ovary. Several months after my hysterectomy I was still experiencing abdominal pain on my left side and could actually feel a lump, it got so bad I was nearly phyiscally ill. After a scan it revealed a mass and I was sent to see a General Surgeon - it turned out that Endo cells had transferred during my c-section and started growing on the muscle wall on the outside of my abdomen wall so it was between the abdomen and the fatty layer below your skin. Since it was superficial they couldn't do laproscopic surgery and I now have another large scar across my stomach well above my c-section scar. What is most frustrating is that nearly 5 months later it is still giving me pain, which is especially bad around my ovulation (since I no longer menstrate I can only judge this is happening by my skin getting a little spotty). I went to the GP again last week for her to check if she felt any further lumps and she said she could feel numerous lumps this time on the right side of my abdomen. I am going for a scan this week to have them checked out but am terrified about having another surgery since the lumps are in a large area and surgery for these would be hugely extensive. I have had 8 abdominal surgerys and am really starting to get so dispondent - is there going to be an end? My surgeon said he had only seen this in two other women but by reading this it is obviously more prevelent than thought. I have thought about just grinning and baring the pain but when I can't even lean against the bathroom sink to brush my teeth due to the pain I'm not sure I can - is there anyone else with the same issues?

Helen


emma 5 years ago

well here goes i stumbled across this page searching for advice, and in ways to see all your storys brings a strange comfort but on the other hand some scare me , i had an emergency c section with my son who is now 10 years old , about a year after i had him i was literally took to my knees with a sharp stabbing pain , i went to the doctors and sent to hospital they could not find anything but my blood cell count showed something was going on i was referred to a gyno , who i hav been under for 9 years , from day dot he made it clear to me that i could not have key hole surgery as it would be to dangerous that i woud have to have c section again and the the lump wich is the size of a golf ball on my abdomen wall cut away, with having two young kids i decided this was not a option , and so contiued to suffer not all periods were the same , but some have been hurrendous , i recently went to see him and he had student nurse with him when he asked had i thought any more on the op , he indicated keyhole , and i said i thought i was not allowed that he said i didn't say that, i felt embaressed but very confused and i know for a fact what he had said all these years and at times my partner has came to appointments with me , now i dont want to go back to him as i he made me realise i am just a piece of paper work to him and i also do not want to have key hole unless i know it safge thing to do as i do have alot of scar tissue , but i need to do something as over the past two years i have added pain in the higher right side feels like something is stuck and my stomach swells and sore to the touch , i feel like i have a tube of badness running right down to where my lump is , and when it flares up it can pain to urinate aswell , its begining to make really depressed, i have had my kidneys scanned and xray as one of the bouts saw me in hospital but came away with the same thing the lump is endometriosis and you need to see your gyno . i am at a loss as i do not know who to trust, all i do know is this added pain i have been getting is showing itself more often and i soen 4 or 5 days on strong pain killers, i thought who better to seek advice from than endometriosis sufferers?????


Mary 5 years ago

I just had surgery 10 days ago. My story is similar to alot of the women on this board. I have been going back in forth to the dr. over a year first told cyst on my ovary, then a hernia, a desmoid or sarcoma after a biopsy it was determined I had endometriona of the ab wall. I was also told it was the size of the golf ball but after the surgery it was more like a baseball. A good piece of my abdominal wall was removed and an outer edge to decrease the risk of it returning. I had a c-section 14 yrs ago and until this last year not a problem. My period are normal but this pain in my lowere left side progressively go worst to the point I would have to brace myself to cough or sneeze. I opted for surgery as I wanted my life back. I am very active and felt that my life has been on hold waiting for answers. My question is the recovery from this surgery seems so much worst than when I had a c-section a slight cough brings tears to my eyes can anyone tell me what to expect and how long before I feel like myself again. I know its only been a little over a week but any advice would be helpful. I am out of work for 3 weeks will this be enough just standing for more than 15 minutes hurts.


natalie 5 years ago

Hello all. I think I have finally found a place where people are just LIKE ME! I've been living with this horrible pain in my upper right quadrant- along my ribcage- in both the front and back of my body. The pain has gotten significantly worse since I've been off birth control pills. The skin on my stomach muscles is virtually numb, but the pain is under that numbness. The pain gets HORRIBLE the day before I start my period and lasts for nearly 3 weeks. I do have about 4-5 days were I don't have hardly any pain, but then my cycle starts and the pain returns. ARGH!

I have seen numerous doctors and have had every test imaginable done. Of course, I've been told that I am fine and there is nothing wrong with me- which is great that I don't have cancer or some horrible life threatening disease- BUT WHY DO I HURT SO MUCH?

I have never been pregnant, never given birth, never had any abdominal surgeries... My periods have never been bad or painful- so my ob/gyn has ruled out endometriosis in my girl parts. I asked her about the possibility of the endo traveling to my upper abdomen and she said that it's nearly impossible since I don't have endometriosis anywhere else.

Well fast forward to last week when I had an ultrasound of my ovaries. They found a endometioma on my right ovary! I say this with an exclmation point because this may finally be proof that I do in fact have endometriosis IN MY BODY, so couldn't it be possible that it is in my abdominal muscles as well?

I am having another ultrasound this week to see how the endometrioma is- did it grow/shrink with my cycle- so we'll see. I did hear that Bayer has a new birth control pill that was specifically formulated for women with endometriosis- apparently it helps shrink the endo in your body! After I finally get pregnant, I am certainly going to look into that pill!!!

As for the pain, Aleve is the only thing that has worked to lessen it at all- never makes it fully go away, but it does help. And Midol PM helps me sleep. Heating pads and ice too.. I feel like an old lady sometimes and I'm only 35- which sucks- and is getting OLD!

If I find any answers to my pain, I will share here. I'm pretty demanding and will not stop until I get an answer to what is actually causing my pain.


Aimee 5 years ago

Glad to find I'm not the only person in the world to end up with endometriosis at an incisional scar as a result of a cesaerian section. It took almost 13 years to find out what was wrong. First the doctor thought I had a hernia, then it was maybe a swollen lymph node, then it was scar tissue. Finally I got an answer last week. I go for an MRI tomorrow so the Dr. can decide how to treat.


andrea 5 years ago

its been 6 months since i originally posted. on december 8th i had surgery at memorial sloan kettering cancer hospital in nyc. my mass was the size of a softball, and deeper then originally expected. as i had previously mentioned, not only was the mass attached to the abdominal wall, it was deep in the rectus muscle and fused to my uterus. the mesh wall i now have is huge, and recovery has been slow going. on a hole i am doing really well. today i started having some jolts of lightening pain so i am freaking out. i dont know how i could be having any when the entire mass and surrounding area was taken out of me. before deciding to have the surgery, i did go to many specialists and surgeons, and every one of them wanted to write a paper on me and not sure how to treat me. i did go on lupron which was a horrible experience for me, and was not working to slow the endo mass. during my surgery, endo was also found in my rectum. this spot was no removed as it was not causing me any issues.


teah 5 years ago

I'm scheduled for surgery in two weeks for my endometriosis from a csection ..is it possible to have kids after?


mandy 31 5 years ago

you have all helped me feel better. i had a c-section 3 yrs ago, and started feeling pain 2 yrs ago. i never told anyone because i thought it was just scar tissue. last month the pain got so bad i went to the ER. i told the doctor i've had this pain for 2 yrs, got worse 9 months ago, got even worse 3 months ago, so bad now had to come in.it's always around my period, about a week before all during and about 4 days after. also said i feel a lump on lower left side. he checked, said he could feel nothing. he did an internal, said he felt nothing, my blood work came back normal. i told him let me roll on my side, he found it right away. luckly there was a surgeon on the floor. told him my story, he knew right away what it was. had an ultrasound, they found a mass. went to my family doctor for resaults, he's never even heard of this before. go see the obgyn on the 16th to talk options. just wanted to thank you all for sharing your stories. nobody understands this pain, it effects everything i do when it's here. in all of you i have found comfort, thanx again


Natalie 5 years ago

Hello- I posted about a week ago and have an update. My second ultrasound came back that the endo on my right ovary has grown and it was also found on my left ovary. So my ob/gyn has recommended I have the endo removed from both ovaries in the next few weeks- insurance has to approve and then I will have surgery shortly after. I still have the pain in my upper right quandrant of my abdomen, and hoping that my doctor will be able to explore there while she's in my body removing the other endo.

I wanted to include my email address so people can email me with thoughts, questions, etc. I've never had a laparoscopy, so if anyone has, please email me to let me know how it was. I assume it's not as invasive as some surgeries, but I'm worried nonetheless.

nattylite88@hotmail.com


Theresa 5 years ago

Hi all,

Almost 2 years ago, I had my surgery to remove the abdominal wall endo (I posted my experience here as well). Well....it's baaaaaack... Probably like 6 months after my surgery, the same symptoms appeared from when it first began after my c-section. When the endometrioma was removed, they also removed part of my muscle and treated it like a hernia using a mesh to fill the hole. Well, underneath that now rock-hard mesh, I feel that familiar lump thriving again. It's not that big right now, but I'm sure it will get there in time. I'm beginning to think that this will be a problem I will forever have to deal with. Though I do not want anymore children, I do not want a hysterectomy (too many risks). B/C is too dang expensive nowadays and I do not react well to it so that is not a good option for me either. I'll push this next surgery off as far as I could, or until my little friend is visiably protruding from underneath my skin again.


Becko 5 years ago

2ND UPDATE- for any of you following my story-- I had surgery on what I thought was a desmoid tumor recently ( originally thought to be a hernia then suspected incisional abdominal endo from my c-section ) - the mass was removed w/ wide and clear margins, but the path report's final report actually found it was an endometriosis mass not a desmoid- it has been an exhausting journey, but i was relieved it wasn't cancer as i could get more tumors in the future. And I'm relieved I will not have pain anymore- In my case, the surgery I had was bigger than I might have needed , but I had the best care ! And hopefully will never have to worry about this again-- such a crazy thing- best wishes to all of you suffering w/ the journey of misdiagnosis and pain --both possibilities were rare, but def i ended up on the good side of things in this case!- etc--


Maria 5 years ago

Thanks ladies for sharing your stories.

Here is mine,

Nearly 3 years ago while showering I felt a small almost hidden lump under and slightly above my C section scar, initially I was concerned but after a visit to my gynecologist and a sonogram she assured me it was scar tissue from my C section, (In October 2006) at that time I was not experiencing discomfort or pain, a year had passed and I started to experience some discomfort and notice the lump becoming larger. After a second visit to a different Gynecologist and another ultrasound, the same conclusions were made, large scar tissue under scar. But now 3 years later my periods are unbearable and the pain is affecting my life. I’m looking into my next step into this process of finding out what I need to do to take care of this, the lump is noticeable just by looking at the area and undeniable present by touch, I’m keeping a journal as suggested recording my periods , pain factor ,etc. I found a heating pad to give temporary comfort, I don’t like to take pain medicine but the pain is getting worse.


nicolec 5 years ago

Hello All,

I had an endometrial growth in my abdominal muscle that began to manifest itself through stabbing pains in my lower right abdomen about 2-3 years after my c-section. I found the mass myself, researched on the internet at the time, and took the little info that was available at the time on abdominal endometrioma to multiple doctors. My original ob/gyn that did my c section was in complete denial and did not want to listen. They could not get beyond the idea that I had something that was OUTSIDE of the realm of reproductive organs and kept doing ultrasounds on my uterus when I would repeatedly explain that this was not where I was feeling the pain.

So, I changed doctors and found one who would listen and who felt my "little ball" that was in my lower right abdomen. He referred me to a general surgeon to test tissue from the mass, which turned out to be endometrial cells. While the next logical step would seem to have been for the general surgeoun to remove this, he did not want to as he considered this a gyn issue, even though the location of the mass was not within any reproductive organs. My new GYN, fortunatley, agreed to do the surgery. This was in 2005. For the most part, I've been pain free since but am now having a strong resurgence of pain in the same area and it's 2011.

I don't want to admit that this is coming back and I don't want to get on birth control pills, which has been one recommendation from my gyn to supress some of the pain early on.

Regardless, though, I encourage all of us to be pro-active and not lose faith in our own understanding of our bodies and sense if something is wrong. When I first started researching this back in 2001, there was hardly anything on the internet about it. I'm shocked at the number of women that are experiencing this and hope that we can all educate the medical community so that they are more aware of it and can better respond and prevent it. I will again seek out a solution if the pain continues at this current level. The excision made the difference for me back in 2001 for five years and if I have to do it again, I suppose I just will.


5 years ago

ME TOO NATATLIE


Liz Wheeler 5 years ago

I also have been diagnosed with an endometrioma. Did anyone have other symptoms like extreme fatigue, almost like you're pregnant? I feel the need to take naps a lot of the time, but especially during my menstruation. The fact that a lot of iron is housed in the cyst may explain my low iron count, too! I also tend to eat as if for two. I'm just wondering if this is habit from my pregnancies or a tendency that might come with this cyst. My surgery is in a month.


Jules 5 years ago

I also have endometriosis. I was diagnosed when having a tubal ligation in 2002, one year after a c-section and amniocentisis with that pregnancy. The c-section delivery was complicated by the surgeon cutting into an abdominal vein or artery and I bled profusely prior to even delivering my daughter. Anyhow, when I had the tubal the next year by laproscopic surg, the gyn surgeon said I had pretty bad endo and she had lasered most of it. I felt great for many years. 2 years ago I noticed a painful area to the right and slightly below my umbilicus and a couple inches above my c-sec incision. I thought I could feel something. It has progressively become more sore and burns. This past fall my gyn ordered an US to look at my ovaries and uterus. They found a small mass/area that appeared to be near my bladder and ordered a CT scan. The CT scan showed a 2-3 cm lesion or mass in my right abdominal wall area--between the muscle and subcutaneous fat. I met with a surgeon who said it is probably a lipoma and that he should remove it. needless to say, I have procrastinated as I do not want to have surgery, especially as I have felt pretty good. However, the last few months, it has occassionally been bothering me again and then today, out of the blue I am in pain. I feel bloated, my right side hurts, and it feels like it hits on nerves. I cannot get comfortable. Coincidentally, it is the end of my period, and this is when it always hurts the most. What the heck. I suppose I should bite the bullet and have it removed before it gets any bigger, but I am really scared. I can deal with it being endometrioma, but not if it is something else.


kerryn 5 years ago

Hello, I have had this problem for ten year now. I will be having my 4th surgery on thursday. I had a Myrena fitted on the last surgery which delayed the growth of the endio and will get a replacement put in while I am under having the masses removed. There is something new out that my gyno told me about. It is a liquid they spray into the affected area that can reduce growth. It is still in early stages of use so I will wait till my next surgery I think. but you may want to look into that. The pain this causes me is unbelievable and I actually look forward to the surgery. I am amazed at how many other women have the same problem. I had a good friend that suffered from this disease and I used to think she was over dramatising her periods. I owed her a huge apology. So it looks like from all the research i have done that surgical removal is going to happen until menopause. But please do look into the other suggestions i made. The myrena has really helped me. All the best to all of you. Kerryn


Jenz 5 years ago

For something so "rare" it appears to be fairly common. Just had mine removed yesterday. It was attached to the muscle. I bet obs are reluctant to own up to the issue because it is thought to be a result of improper c-section techniques. I, too, had to find the right dr. And once I did, he knew exactly what it was. Now I'm crossing my fingers that this is the end of it.


Anna 5 years ago

I've been fighting debilitating pain and the growth of the "lump" for over 6 years now. I've had exploratory surgery for adhesions (none found), was told to lose weight (I did it didn't help), and have had almost every narcotic pumped in me to deal with the burning, ripping pain I experience. No one has told me about abdominal wall endo. This sounds exactly like what I have. It's all along the right side of my body and around my second C-section scar. It's grown from two grape sized lumps to a mass that I can feel up to my navel, down to my pubic bone and almost all the way from my navel to hip.

What I need to know is the average recovery time from surgery? I am the only working adult in my house right now and I have very little sick time left (It's been a wild ride- not only have I dealt with this, I also have gastroparesis (paralyzed stomach),esophageal ulcers, had to have my gallbladder removed and had a large mass removed from my womb last year after I hemorrhaged uncontrollably. I also am anemic.) I can't go without a paycheck... but I am living on tons and tons of ibuprofen when this flares up just to be able to function. Note the ulcers and the mass in my uterus... I can't continue to do this.

Also did you have your OB/GYN cut the endo out or did you have a general surgeon? Is it possible for this stuff to get entangled in organs, etc? If so, I imagine I am in for a longer surgery (more invasive) and recovery time.

Thanks everyone, I am tired of suffering. I stopped going to the ER for pain management because the drugs they gave me through an IV did not help at all.


Carrie 5 years ago

I have been miscarrying for the past 4 years and had failed IUI, FED, IVF cycles. My NUCCA Chiropractor just told me I have endometriosis and pressed down on my abdomen and got rid of all the lesions, naturally, hurt while he was pressing down on each one. I left with a red welted tummy but I'm glad the he removed them naturally! It's scar tissue on the abdomen wall due from not mensing properly. the lining would not directly leave me through the cervix but would hang around and cause lesions. My NUCCA chiropractor also adjusted my crooked spine by doing an atlas subluxation adjustment. I'm standing straight, shoulders, pelvic straight, better circulation. I just love him...Let's see if I can make a baby now!! He says he pressed down on lesions on another patient a month ago and now she is pregnant.! Have hope


Patricia 5 years ago

Hello,

I am 32 and had my cesarean 8 years ago. I went to a specialist for endometriosis to look at this pretty large mass near and below my belly button. After several test ct,mri and neddle guided biopsy they found a 4cm by 4 cm endometrioma deep inside the layers of my rectus abdominal muscle. They are telling me that I will need reconstructive surgery with mesh and a possible plastic surgeoun to assist. The mass they can feel by my belly button is not showing on any images. But it is large they marked by touch as being 5-7 cm atleast. I can say this pain is like no other pain it hurts to move. Feels like it has taken over my whole muscle. They also said I will not be able to carry a baby. I guess my question is this has any of you had a baby after a surgery like this I am so depressed and a mess really looking for answers. I would be so grateful for any help with this.

TRG5979@AOL.COM


Joy T 5 years ago

I am currently going thru this as well. I had two vaginal ultrasounds 4 months apart that did not show anything. I was scheduled for a CT Scan which I did about 10 days ago. That showed a 3 cm mass on my abdominal wall. My Dr. has now determined that she is sure it's endometrisis and I am now being scheduled for surgery. NOT laproscopic surgery but one sort of like a c-section. I'm anxious but so ready to not be in pain each month. If anyone wants to discuss my email is jjtincher1021@aol.com


hoplessintx 5 years ago

Wow, I wish I would of found you all 2 weeks ago. I am 26 yrs old and just had a hysterectomy upon hysterectomy they finally looked at ,what they called swollen lymph nod, and removed the golf ball sized abdominal mass. They left my ovaries because of my age. I have another mass just below my belly button that is from what I now belive my Amnio. The Dr. stated that I will have to see a general surgeon to have this removed and it will be a way more in depth procedure. I'm so scared now that this will be a never ending battle I will have to fight forever. I would like to start a group for all of us to get this out there to get more knowledge about this to others. We have to get this known so many are fighting this battle its unreal. I wonder if there is anything we can do to prevent other women from getting this.


renee 5 years ago

I had a c-section in 2008, reocurring pain in my left side led me to my GYN who said it was cysts and that they are normal,after2 yrs of pain and push back I switched dr's 3 sonograms later they found something! This took months and persistance well my dr. Referred me to a surgeon that thought it may be a hernia,well had the surgury and it was endometrioma aka soft tumor in my abdomin wall its been a week. Ill keep you posted.


April 5 years ago

I have read alot of stories and experiences here and each time I keep thinking this sounds just like me. I have had 2 c-sections, 1 when i was 23 weeks pregnant and another when i was 30 weeks pregnant. I went in for my 6 week check up complaining of alot of pain around my lower abdomen. thankfully my doctor was a great doctor and suggested doing a D&C to make sure that he didn't leave anything in there even though i had a c-section. 2 weeks later he came back and told me that i had andomiosis and that I needed to have a hysterectomy and i was scheduled for surgery 3 days later. at the time I was 27 years old and it was 2007. about 6 months after the surgery i noticed a lump an inch by my c-section scar. it wasn't really painful but was bothersome. at the time my husband had gotten laid off and started working for himself but that also meant no insurance. the spot started to hurt more about a year after my hysterectomy to the point where sex was so painful that i really didn't want to have anything to do with it. i'm short only 5 ft tall and after 2 years my youngest daughter's head was at the perfect spot so when she came to give me a hug unless i bent down, she hit that spot time after time. It hurt so bad it would drop me to my knees and i would be in so much pain that i couln't move and i would be down for the count for a couple of days. I started working to help with the bills and applied for ins through my work. i went back to seeing my ob/gyn and they did an ultrasound when came back with a 3 inch cyst on my right ovary. he decided that it needed to be removed and was scheduled for surgery again. he thought for sure that was the lump that we was feeling and he would be able to get rid of it. i wasn't worried since i would rather have the menopause then the pain that i was dealing with. it's hard to explain the pain, it was a stabbing pain and sorta an itching pain but if i scratched where the spot itched/hurt then i couldn't feel anything since i have no feeling there from the surgeries but when i stopped scratching the pain and the feeling of itchness would come back 10 times worse. i had the surgery and he removed the ovary. it wasn't even a week later that i was still having the pain and the lump was still there. i was told that it was b/c of the surgery and that it had to go down. after 6 months i went to my primary care physician and he decided to do a mri. they called me back with the results 4 hrs later telling me i had to get up to the hospital right away b/c there was so much inflammation that the radiologist really thought that my appendix had ruptured and that was causing the pain. i explained to them that i had that removed with i was 13 yrs old. he said that i still needed to come in for at least blood work b/c there was so much inflammation that it was affecting other organs. i did the test and then a week later was put into the hospital with severe pain and they thought i had a kidney infection. i was in the hospital for another 5 days and they did exploratory surgery to find the lump but told me they couldn't find it. it wasn't until i started at my new job in 2010 at a dialysis clinic that my boss a doctor suggested that i go and speak with a surgeon that is a friend of his. i explained all of the surgeries that i've had and what people have told me that it was only scar tissue and that there was nothing that they could do and i had to live with the pain. he felt around my stomach and told me that he thinks it's in the fatty tissue and that it wouldn't take that long for him to just remove the lump. this isn't a gyn surgeron but just a general surgeon. i had the surgery the next day on jan 2011 and when i came back for my check up a week later he told me that it was endo and that the lump was 4 inches wide. he told me that he got everything and that i should be pain free. and he was right for about 4 months. now the pain is back even more to the point where walking hurts alot. i have a 2 lb dog that if he walks on my abdomen i'm in tears. i don't have a lump there anymore but it's hard to push on that area to assess it since it hurts so much. my husband wants me to go back to the doctor but i'm worried that nobody is going to listen to me. it took me over 4 years before i could find someone who was willing to do the surgery but only b/c he could feel the lump. now there is no lump but that much more pain. i just feel like giving up sometimes. the pain is so bad that sometimes i wish i had the guts to stab myself in the stomach where it hurts so finally someone will see what's going on and do soemting about it. i'm tired of hurting and i'm tired of it affecting my work and my life and my marriage. please give advise if you can. thanks


Joy 5 years ago

Update: I had surgery yesterday to remove the mass on my abdominal wall. It was what is called a "Chocolate Cyst" Very easy surgery i've really not been in any pain. I'm really hoping that this surgery will fix teh problem for good.


Amy 5 years ago

July 2007: I had a c- section .

Nov2009:

Symptoms:Pain for the first 10-15 days of the period .

Size: 2009-identified at 1 inch, 

2011July: nearly 2 inches.

OB/GYN got a question about lump at incision area and sent to general surgeon for followup and to confirm it is endomertriosis and it is not hernia .

General surgeon decided it's not hernia based on physical checkup and symptoms of pain ,he decided it is endometriosis .

MY OB/GYN prescibed,

Pain relief:,  by  advil is ibuprofen 2*200 mg for every 4-6 hrs and using  birth control  from 2010 nov.

Aug4 : nearly 5-10 drops of red blood bleeding from the endometrosis-incision area externally in about 30 min occurred .

We called to ob/GYN office and they asked to visit next day as the bleeding stopped after 30 min .

Aug 5 : 

OB/ GYN reffered to same generalsurgeon for follow up and surgery

he checked again for hernia and confirmed it is not hernia 

and asked /told us:

1.2009 when we first visited him i was not treated for endometriosis and he wantsme to see  OB/GYN for treatment for endometriosis . 

As birthcontrol and advil gave pain relief , OB/GYN confirmed it is endometriosis

2.2011 Now u were treated for endometriosis and the size increased in time and did not shrink in treatment and bleeding which may mean its from the skin as it is red in colour .It may be endometria which is growing toward skin and pushed it outside , which needs attention of surgery.

3.ordered for a CAT scan for abdomen and pelvic area just to check the current condition.(he told endometriosis may not be identified with this scan)

4.no mater what CAT scan shows surgery need to be done , but not immediately ,time of max 1 month can be taken

5.he did not recommend travel abroad 

Then my GYN with more than 16 years experience , told me that she is not thinking it is endometria and it is something else .

 After 1 week :

CT scan       SUMMARY:

1. No hernia.

2. Subcutaneous mass left lower quadrant with overlying thickening of the skin.Findings suggest a hematoma given the history. A hypervascular fibrotic mass or neoplasm cannot be excluded.

So my surgeon and gyn asked us to schedule for surgery and cleaned it

On aug 25 : I had  surgery (on second day of my period )to remove the lump and given 6 weeks no bending and heavy lifting.

Biopsy report:

Endometriosis with associated hemorrhage and scar tissue formation.

Now Iam  in my 4 th week after surgery 

Iam  waiting for my period and very tensed of getting my symptoms back .

 I have doubt that the procedure is same for abdominal wall endometria and something else?

Any ideas and suggestions? Pls let me know .

Amy.


Paula Lloyd 5 years ago

Hi Ladies,

Thankfully this blog has given me so much information and I am not as worried as I was. I've had 2 c sections in 2002 and 2005. In the past 6 months the 2 day tingle and the feeling of a small strip behind my c section scar has suddenly turned into excruciating burning, stabbing, tender for almost 2 weeks and I can really feel a large bump. Usually this gets smaller and shrinks to nothing after my period to the point where it doesn't bother me at all. This month though, the pain made me go to the Dr who said straight away I have Endo in my C section scar and now I am being seen by a consultant next week so I will keep you posted.


Amy999 5 years ago

Whole report:

July 2007: I had a c- section .

Nov2009:

Symptoms:Pain for the first 10-15 days of the period .

Size: 2009-identified at 1 inch, 

2011July: nearly 2 inches.

OB/GYN got a question about lump at incision area and sent to general surgeon for followup and to confirm it is endomertriosis and it is not hernia .

General surgeon decided it's not hernia based on physical checkup and symptoms of pain ,he decided it is endometriosis .

MY OB/GYN prescibed,

Pain relief:,  by  advil is ibuprofen 2*200 mg for every 4-6 hrs and using  birth control  from 2010 nov.

Aug4 : nearly 5-10 drops of red blood bleeding from the endometrosis-incision area externally in about 30 min occurred .

We called to ob/GYN office and they asked to visit next day as the bleeding stopped after 30 min .

Aug 5 : 

OB/ GYN reffered to same generalsurgeon for follow up and surgery

he checked again for hernia and confirmed it is not hernia 

and asked /told us:

1.2009 when we first visited him i was not treated for endometriosis and he wantsme to see  OB/GYN for treatment for endometriosis . 

As birthcontrol and advil gave pain relief , OB/GYN confirmed it is endometriosis

2.2011 Now u were treated for endometriosis and the size increased in time and did not shrink in treatment and bleeding which may mean its from the skin as it is red in colour .It may be endometria which is growing toward skin and pushed it outside , which needs attention of surgery.

3.ordered for a CAT scan for abdomen and pelvic area just to check the current condition.(he told endometriosis may not be identified with this scan)

4.no mater what CAT scan shows surgery need to be done , but not immediately ,time of max 1 month can be taken

5.he did not recommend travel abroad 

Then my GYN with more than 16 years experience , told me that she is not thinking it is endometria and it is something else .

 After 1 week :

CT scan       SUMMARY:

1. No hernia.

2. Subcutaneous mass left lower quadrant with overlying thickening of the skin.Findings suggest a hematoma given the history. A hypervascular fibrotic mass or neoplasm cannot be excluded.

So my surgeon and gyn asked us to schedule for surgery and cleaned it

On aug 25 : I had  surgery (on second day of my period )to remove the lump and given 6 weeks no bending and heavy lifting.

Biopsy report:

Endometriosis with associated hemorrhage and scar tissue formation.

 Currently Iam in recovery :

Now Iam  in my 4 th week after surgery.

Now I got my period after surgery and feeling bloated and little abdominal swelling .

 I have doubt that the surgery  procedure is same for abdominal wall endometria and something else too?

Any ideas and suggestions? Pls let me know .

Amy.


Katrina 5 years ago

Hi I'm in a lot of pain and have a mass on my right side just like everyone else. My Dr. did test for endometriosis but found nothing. Did anyones Dr. do a CA125 blood test on them? If so did it come back high? Please help


Gina White 4 years ago

I am so relieved to hear that others have experienced what I have been. I am scheduled for surgery in about 4 weeks. I am having a plastic surgeon close me as I do not want to develop more problems. I am now in constant pain and it is taking over my daily living. My son is 5 and I thought I had a hernia. I saw my gyn and 2 surgeons as well as an ER doc. and we now know that it is an endometrioma. My mass is quite large and is attached to my muscle. I know that I will feel great after my recovery. I have only been very uncomfortable for about 4 weeks .


MaybewhatIhave 4 years ago

I am hopeful after reading these stories. I had a csection in june06, and starting have pain just below my scar in june11. I can feel the "mass" and the pain is getting worse. My family doctor at first said it was a fatty tumor, but just yesterday...said it feels harder and is connected to something. I am freaking out, not knowing what it could be. He is referring me to a surgeon. I am def. going to bring up the possibility of endometrisis.


Ann 4 years ago

I fianally diagnosed with endometrioma of the abdominal wall. just wondering what my scar will look like after I have it removed?


Leslee537 4 years ago

Thank goodness for all of you. I honestly thought I was losing my mind and I couldn't get anyone to understand what in the world was happening with me(including some of my doctors). All I knew is that it HURT unlike any other pain I had experienced before.

I have had 2 c-sections. The first in 2000 and the second in 2008. After my first c-section I felt a lump in my lower left quadrant at the end of my incision. I visited my OB/GYN and he did a sonogram producing no results. Honestly, the lump was not painful and he told me that it could easily be a lump of scar tissue. After I had my daughter in 2008, I began to feel an uncomfortable pain about 8 weeks following the surgery on that little lump. I also had the Mirena put in at my 6 week follow-up, therefore my OB/GYN felt that this may be causing some of the discomfort. BUT the next month came and it came back at the onset of my period. In the beginning, the pain was only uncomfortable. It lasted for 5-7 days and I learned to deal with it. As the months went on, the pain became worse and in the end it was consuming my entire life for 14 to 17 days per month. My OB/GYN doctor referred me to a general surgeon after 2 years of complaints and him providing no answers. I met with the general surgeon and I had an MRI done. The results showed a definite black blob right where I was hurting (because I saw it myself) yet he still wasn't sure. He told me it was probable scar tissue or a possible hernia. He suggested steriodal injections for relief. Of course, I did as the doctor recommended believing that he MUST know best. After 2 very painful injections, I told him no more and that they were not working. His next suggestion was a referral to our local pain management center. I was so MAD to say the least, I was not in search of an addiction or anything that I would have to treat with narcotic pain killers for the rest of my life. I was beside myself and went on dealing with the pain. Of course, you all know, you can only handle so much. So this time I visited my family doctor for a referral to another local general surgeon (this time my choice). I had my first appt and told the long and painful story I had told so many times before. He immediately looked at the MRI that had been done a year prior and told me that he thought he could help me but it would require surgery and he could not 100% guarantee he could fix it, but felt very strongly that he could. At this point in my life, I had to do something.

Everytime I would explain the pain to friends or co-workers I felt like I could never fully describe it. Horrible, AWFUL, burning, stabbing, episodes of pain. My children, my husband, my job, my friends, and my weight have all suffered from this. I used to say that recovering from a c-section was a breeze compared to this. To be concious of every move you make is awful, even down to what ways breathing is the most comfortable or how you can position yourself just to sleep through the night. I wouldn't wish it on my worst enemy.

I had my surgery one week ago today. I was nervous but ready because I was hurting pretty bad that day. The doctor told me he had removed an endometrioma abdominal wall mass the size of a tennis ball and he had to remove some of the abdominal muscle and insert mesh in that area. When I woke up in the recovery room I felt wonderful. The pain was gone (at least for now) and I felt like a new person. This first week at home has been great and it has been hard for me to stay in bed because I haven't felt this good in three years. The incision is above my c-section scar and is slightly shorter than my original incision. I am scheduled for my one week follow up tomorrow.

After reading all of the above posted stories, I am definitely worried about the mass returning, but I am trying to remain optimistic. My husband and I are wanting one more child and I am not ready to have all my "baby making parts" taken just yet. I am hoping and praying that this nightmare will be a distant memory. Good luck to all of you and thanks for sharing your truly inspirational stories.


4 years ago

So very thankful to find this blog with all these comments that are so similar to my problems. After a million failed attempts of diagnosis, ((even being told I needed to see a therapist because my debilitating pain was just my imagination!!)... I finally had surgery removing my abdominal wall mass that was found to be endo in September, 14 long years after the emergency c-section that caused it. The dr. said it was the size of an ostrich egg. The 2nd biggest he had ever seen. I had my entire abdominal wall reconstructed because the mass had become a part of my abdominal wall muscle which had to be removed as well, 25 staples, an unknown amount of internal stitches, drains, the works. Since sugery I am having more complications and was wondering if anyone has experienced any after effects. I was scanned again Dec. 23 because my surgeon was certain that a seroma had formed. The catscan/radiologist concluded it did not but I have every symptom that tells me otherwise (pre-surg clothes do not fit, weight gain that will not budge a pound with diet and exercise and my pregnant looking belly is hard)If anyone has experienced this and has any suggestions please advise :/


laura 4 years ago

I am glad I found all of you. I had this strange pain for 7 years after my 2nd c section. I went in to see a DR about a tummy tuck and told him of this lump and all the pain associated with it. He is a general surgeon and will be taking the tissue out in March, so I'm getting the tissue removed and a tuck. I have not been to a gyno in years(I know shame on me!) but now I will be going often. Thanks for letting me know I'm not alone and this awkyward thing I have had for so long has a real name.

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