My Experience With Abdominal Wall Endometriosis
80My 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 beleived to be surgical tearing from the c-section. Now, surgery for endometriosis in my abdominal wall. Lucky me.
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 a 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?
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!
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.
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.
Is it possible to NOT experience pain during the early stages of tumor growth?
Jason, endometriosis isn't a tumor, it is a mass of uturine lining cells.
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.
Carrie, go to the top of this page and under my picture there is a 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)
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 familar 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.
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 wasnt healing right inside of me, but they couldnt 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!
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?
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.
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.
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
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.
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
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.
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 thats a little exstream.
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.
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 thats 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.
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?
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.
Tara says:
12 months 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 affraid 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.