Thoughts on Abdominal Wall Endometriosis
In my first year out of residency I practiced in Honolulu, HI. One day in my outlying clinic in Kapolei, on the west side of Oahu, I entered an exam room to find a woman crying in pain. She said she had pain in her belly wall that had been present for years and no doctor could help her or tell what was wrong with it. She said that several months after her last cesarean delivery she started to feel this hard lump on the side of her belly. Every month right before her menstrual cycle, this lump would become exceedingly painful, both at rest and even more so with any kind of pressure.
She was absolutely distraught, and was really in my office to ask for some narcotic pain medications to treat the severe pain. So many doctors had failed to make a diagnosis on this issue that she thought it was something she would have to live with for the rest of her life.
But, that day was different, because her doctor that day had been fortunate enough to be exposed to this condition in his training. The woman had abdominal wall endometriosis that had been ignored or missed for years. I scheduled her for surgery that afternoon and by that evening she was completely cured of the problem. I asked her as she woke up whether it still hurt, and she said that she felt some pain from the surgery, but the pain from that mass was gone. It felt good to help her, and I was thankful that I had gotten training in the diagnosis and management of this condition in my residency, something that is lacking in the training of most gynecologists in this country.
Since that time, I have been fortunate to be able to help a lot of women with this condition. The first few came randomly, and to my disappointment each one had been missed by at least a few doctors before I saw them. Eventually I became known as a competent manager of this condition, along with my general expertise in endometriosis, and at that point I started to see a lot of referrals and do a significant number of surgical repairs for this problem.
ORIGINS:
Abdominal wall endometriosis is a predominantly iatrogenic condition, meaning that it is the result of something that we are doing – and that something is cesarean delivery. The vast majority of these cases are subsequent to cesarean delivery, presumably via seeding of the abdominal incision with endometrial tissue at some point during the case. We do not know exactly what are the risk factors in cesarean delivery that cause this condition, but we do know from animal models that if you take a little piece of endometrium and stick it in the fascia when you close it after surgery, abdominal wall endometriosis will result – so presumably that is what is happening.
There are a few things I think we can do to reduce the incidence of this cesarean related endometriosis. Thorough irrigation of the wound prior to closure is likely to reduce or eliminate flecks of endometrium that might implant in the abdominal wall. I also believe, based on my experience but lacking data, that closure of the parietal peritoneum will reduce the incidence of this disease. I say this because of multiple experiences where uteri are adherent to the abdominal wall contiguous with masses of abdominal wall endometriosis. In one of these cases a hysterectomy was required to entirely remove the disease.
Interestingly, people with cesarean related abdominal wall endometriosis do not necessarily have typical peritoneal endometriosis, as it is caused by direct deposit of endometrium into the abdominal wall during a surgery. However, women that have abdominal wall endometriosis who did not have prior surgery most likely do have peritoneal disease, and it is probably severe. Papers suggest that only 50% of these cases are post-surgical, but in my experience cases without prior surgery are very rare.
DIAGNOSIS:
Abdominal wall endometriosis is a disease that is easy to diagnose if you know what the condition is and how it presents, and impossible to diagnose if you don’t. This is called availability heuristic – it is impossible to make a correct diagnosis if the disease state doesn’t exist in your brain’s medical knowledge banks.
In almost every case I have diagnosed, the patient came right out and told me they had it. Not literally of course, but rather they said the words that made the diagnosis certain. The disease presents with a hard mass that is painful at all times, but become larger and dramatically more painful prior to and during the menses. It is exquisitely tender to the touch, particularly during the most painful part of the month. With those symptoms, the diagnosis is almost certain. I can tell you that I have heard this story over and over and over, and I come right out and tell the patient what is wrong before I even look at their abdomen, and in each case it is there to be found on abdominal exam, just missed by well-intentioned people who didn’t know what to look for.
Imaging studies are useful in confirming the disease, though in my experience it is useful only to for surgical planning, as history is enough to make the diagnosis. The proper imaging should be an axial cut CT or MRI. MRI is better at showing the depth of invasion into the fascia and muscle, but either modality is adequate. If cost were an issue one could certainly get away without imaging. Some people (mostly general surgeons) will do a fine needle biopsy to confirm that it isn’t a malignant tumor, though I don’t think that is necessary and it drives up costs.
TREATMENT:
There are three things one can do with abdominal wall endometriosis, only one of which clearly leads to lasting cure of the problem.
As AWE is endometrial tissue, it will respond to high dose progestin therapy or continuous birth control pills. It will also respond to Depot-Lupron (leuprolide), and perhaps to aromatase inhibitors (eg letrozole). The upside is that these agents do work. The downside is that the patient is stuck taking them forever, or at least until menopause, and that they are not really treating the problem.
There are some recent trials that suggest efficacy in ultrasound guided injection of phenol directly into the endometrial tissue. These injections destroy whatever tissue they go into, so properly guided this probably does work. It is however something that is still in a research stage and only supported by a few recent papers (in international press.)
The final intervention, which is both curative and reliable, is surgical resection of the abdominal wall disease. In my experience, complete resection of the indurated tissue in the subcutaneous space, including resection of underlying fascia if necessary, is curative of the problem. I have had only one patient who did not experience complete relief, and subsequent imaging showed that she had a satellite area of disease that was not resected in the first surgery. She was cured in a subsequent surgery to remove this additional disease.
SURGICAL TECHNIQUE:
This procedure is performed under anesthesia by opening up the old cesarean scar, identifying the endometrial implants, and resecting them. In some cases the implant is superficial enough that removal does not require entry in the rectus fascia. In other cases the disease is invasive into the fascia or even the underlying rectus muscle, requiring resecting a portion of the abdominal fascia. Small fascial defects can be closed primarily, while larger ones can require mesh reconstruction of the fascia prior to closure.
I have removed quite a number of these, and in my experience about half require some level of mesh reconstruction. There are some studies that show a much lower likelihood than that, though I suspect they had a population with less severe disease than I have seen. My criteria for mesh reconstruction is a lack of ability to reapproximate the fascia without significant tension. I have predominantly used a biologic mesh (either Strattice (porcine dermis) or Veritas (bovine pericardium)) which is reabsorbed and replaced with fibrosis over time. Some operators use a permanent mesh. Permanent mesh is likely superior for large defects, though it comes with a chance of infection requiring removal. Porcine or bovine mesh will not get infected easily (if placed in a sterile field), but there is greater risk of subsequent hernia formation. We lack any randomized trials to direct us on exactly what type of mesh we should use in this diseases state, other than the general surgery literature on general abdominal wall reconstruction.
Placement of mesh is does by a simple inlay technique. I use 2-0 PDS suture to secure the mesh. Very large defects may require underlay or component separation techniques, in which case I will involve a general surgeon in the closure.
With the placement of any biologic mesh, drainage is imperative as seroma formation is quite common without it. Drains are left in place until drainage is minimal (10-20 cc a day), which can be as long as a month. My experience with inadvertent (gets pulled out accidentally) or impatient (resident pulls it out thinking that 50cc a day was little enough) has been consistently negative, with seroma reformation being common. While patients dislike drains, they can be managed, and they are preferable to a wound that is draining clear fluid for a period of time.
CONCLUSION:
If you are a physician seeing a patient with the symptoms I mention, please think about this diseases state. If you make the diagnosis you will be doing better than 90+% of people out there.
If you are a patient with these symptoms, tell your physician your own diagnosis. If they are not able to help you with it, consider visiting beautiful Portland, OR and I would be honored to help you.
Also see
__________________________________________________________________
Dr. Fogelson is a gynecologic surgeon and endometriosis specialist who practices at Northwest Endometriosis and Pelvic Surgery in Portland, OR. Call 503-715-1377 for clinical consultation or email nfogelson@nwendometriosis.com. http://www.nwendometriosis.com
Academic OB/GYN 
Reblogged this on Endo Invisible.
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I am a patient, so if my terminology is incorrect, please forgive me. If as you say abdominal wall endo is a “by-product” so to speak of c-sections, does this lend evidence to the theory that endometriosis can spread?
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Great question! I think of abdominal wall endometriosis as an entirely different disease than peritoneal disease. Typical endometriosis, or peritoneal endometriosis, is most likely laid down at the time of embryogenesis (while one is forming as an embryo), and does not spread. It may develop over time, or there may be unresected disease after surgery, however.
Abdominal wall endometriosis is something different – it is generally caused by placement of actual tissue from the inside of the uterus into a skin incision, leading to an implant of endometrial cells. It looks a lot if not identical to peritoneal endometriosis under a microscope.
Both diseases are best treated by resection, or cutting them out. The problem with abdominal wall disease is that unlike the peritoneum, the abdominal wall doesn’t grow back after you cut it out, leading to the need for complex surgical technique for removal of large lesions.
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I have abdominal wall endometriosis confirmed by my last laparoscopy but have never had a cesarian section. Forgive me if my medical knowledge is limited, but is it fair to say that the adhesions are caused by prior incisions from laparascopies? The official wording on my surgery report is “extensive lysis of adhesions involving the right abdominal wall.”
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I developed this after my 2nd c-section but didn’t notice it for 3 years because I was on the pill and that must have kept it from growing and masked the symptoms. It was misdiagnosed a lot as just “scar tissue”. One doctor did believe it was abdominal endo and she moved out of the Country before I had a chance to have it removed. Now I am starting all over again trying to even find a doctor that is familiar with it or that I would even trust to remove it. I am scared that it will just grow back or mess me up more inside having a surgery from a doctor who’s never worked on someone with it. Mine is fused to my abdominal rectus muscle and about 3 cm. The only good thing is my recent pregnancy and breastfeeding that kept my cycles away, have completely made it inactive and pain free but I know it’s only a matter of time until it starts making my life hell again. Too bad I live in Illinois 😦
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Tiffany – I live in Illinois too and was diagnosed with AWE earlier this year by a general surgeon (after my OB/GYN and my regular physician failed to correctly diagnose the problem). I had a c-section almost 4 years ago, but first had the pain last fall after getting back into running. Mine is about the same size as yours. I am having surgery for it next week (wish I could avoid it, but don’t want it to keep growing). My surgeon says he sees 2-3 cases per year.
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Hi AJ, what type of surgeon did you go with? I am confused at to whether excision of abdominal wall endo is best taken care of by an gyn surgeon or whether the complexity of the mesh reconstruction makes it best suited for a general surgeon.
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I had a caesarean section in 2010 and from the time menses restarted some 10 months later I became aware of abdominal pain during menses and ovulation, although due to the 3 weeks out of 4 nature of my pain ( from ovulating until a few days after bleeding stopped).
I attended my GP who identified a mass the size of a grain of rice and referred me for USS. The mass by the time of USS was 1cm x 2cm and was a ‘ hypoechoic mass’. I was then referred to a general surgeon who attempted to excise the mass under local anaesthetic. This failed due to how much the mass had grown, however he was able to obtain a biopsy.
When he took the biopsy the mass bust and when he saw the brown fluid contained within he identified it as endometriosis and referred me to gynae.
My gynaecologist was also the person who performed my c section and agreed from the history that this was a case of secondary endometriosis. He offered me excision surgery or treatment with continuous birth control. I opted for continuous birth control initially.
Two years on I decided that surgery would be the only option left for me. Despite ” The Pill”, my endometrioma had grown. It now felt to be about 5cm x 4cm and was becoming debilitating.
On 29th April this year I underwent excision surgery and had a Mirena IUD inserted.
I’m less than 4 weeks post surgery, however I’m already enjoying a progressive recovery. I’ve had no pain whatsoever from the site of my endometrioma, only groin pain and nerve pai, presumably from nerve damage, which I am hoping will resolve in time.
I feel very lucky to have had such an understanding and knowledgeable set of doctors caring for me, I could still be suffering now.
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I suffered from this for almost 5 years (after my second cesarean). I was seen multiple time with multiple exams by multiple doctors. Ultrasounds, mri, X-ray, I even had a hysterectomy. Over and over again I told them what I thought it was. Nobody would listen. I finally got the surgery I needed a month ago. I am so very thankful that I do not have to live with that pain anymore!!!
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Oh my dear Doctor I sure wish I was in the Portland area. This article is excellent and I will print it for my surgical visit on the 29th to help me out. I’ve been dealing with this for 28 years.
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I have had endometriosis since my early 20’s I was on the Depo Lupron to help with it. My husband and I had another child around that time and the complications with the endometriosis got better for a few yrs after my son was born like the Doctor said that it would. But for other reasons I started developing cancer cells in other female parts. so I also got my uterus removed which was causing my endometriosis to kill two birds with one stone kinda thing. So I had a robotic hysterectomy in 2012. I had returned to the OB for pelvic pain that continually got worst so by 2014 a scan showed a mass in my abdominal muscle tissue that was never their before. But I never got those results from my Dr. and of course the scan was missed and the pain was placed on other pelvic diseases until they rescanned me with a CT SCAN and then a MRI. Which confirmed not one mass now but 3 large masses and some smaller ones since the 2014 scan was taken. I’m in pain that is out of this world most of the time. And now that I can get the surgery and relief is in sight. My OB is booked up for surgeries until August. Lol life is so wild.
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Hi! I currently live on Maui (Kaiser insurance) and have a abdominal wall endometrioma. It has been biopsied and it was in fact a chocolate cyst. Neither the gyn nor the general surgeon have removed one before but are wanting to do this procedure. I think it needs to be done with someone who had experience. Is this correct thinking?
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Its helpful to have experience, but once the diagnosis is made the procedure can be fairly simple, as long as the lesion isn’t too big. Quite a few people have flown to our office for management of this condition, and I would be happy to help with your case as well if you are interested in coming to Portland. We cannot take Kaiser insurance, however.
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I have had 2 surgery’s already and even have mesh in the area and it seems as though it has come back again. The surgery’s have been a year apart and now it seems as its only lasting 6 months before the pain begins again. What can i take or do to stop it from reproducing? I’m just so upset that it’s an ongoing struggle with this.
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Hi, i’m writing to you from Algeria (north of Africa) so excuse my English : )
First of all thank you for the article.
I’ve been diagnosed with wall endometriosis two months ago from my second cesarean in march 2015, I’ve two children and I’m worried about the possibility of having children after the surgery ?? And I want to know if another pregnancy can help with getting better or cure the case.
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Hello Loukia – sorry you are having this problem. Pregnancy may make the area not hurt for the period of the pregnancy, but it will have no permanent impact on the disease.
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What is the recovery time from surgery for this?
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I would like to know this too. I have another appt next week and will be bringing this up to my doctor.
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Very dependent on the extent of the issue and how much repair is required. Each case is different.
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Hi, I recently had this surgery this past August. I’ll give you a little insight on my situation before I ask my question. I’ve had 3 c sections. I noticed the mass about a year and a half ago(possibly 2 years). At first it didn’t bother me at all but while laying on my back I could tell it was something there. As time pasted I could feel it was getting bigger and then it was getting painful. I noticed the pain around a week before my cycle and it would go away a few days after my cycle went off. I brought it to my doctors attention and at first he thought it was a cyst on my ovaries after doing an ultrasound. He put me on birth control pills for 3 months and said we would monitor it. I knew it had to be After the 3 months I went back for another ultra sound. That’s when he figured out it was never my ovaries and it was this mass that was still there. He sent me over to get a CT scan done on my abdominal wall. The results came back as nothing abnormal found. I asked that the scan be reviewed again because I knew something wasn’t right. That’s when he said it could be scar tissue or endometriosis. That entire process was frustrating and the CT scan was probably unnecessary but at least he knew I wasn’t crazy. By this time I was in pain almost daily. He used about an inch and a half of my c section scar and tunneled up to the mass to remove it. He said it was invasive and the mass was all in one spot. The surgery seemed to go well and I felt good after healing. However, now I have this bulge where the mass was. It’s not painful or anything but it looks weird. The right side of my abdomen looks normal. The left side.. not so much. My questions is, is this normal and will it go away? What causes this to happen? He didn’t mention doing any type of reconstruction either. I asked my doctor and he said it may or may not. Please give me some clarity if possible. Thanks.
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Thank you so much for this article. I recently had mine removed, 6 days ago to be exact. I have a painful lump in the site which is not red, but somewhat firm. I’m also ovulating right now and am having similar Endometrioma pains as before so I feel not all of it is out. The ob/gyn said she removed it all and it was superficial. What has been your experience of such swelling and/or not getting it all? Once again I appreciated the light you have shed on this matter. No one believed me since my c section 2.5 yrs ago until I landed in the er and then hospital in September for 5 days due to pain and having to have a biopsy done. We need more providers to be trained in this.
Thank you,
Meesha
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This is my second round with an endometrioma, took over 5 years to get this one diagnosed, its almost 3 inches long at this point, attached to bladder as seen in laparoscopic surgery I had in june of 2016, my question is im on lupron to try and get rid of this, thy dont want to do surgery until they give this a try, however I have been on the drug for 6 months now, nothing has changed for me and im still getting terrible periods and have awful pain daily, I have 6 more months of the meds, do you really think it will disappear in the last 6 months?
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Unfortunately no. Lupron has no long term effect on endometriosis, though it may reduce the pain of lesions while one is one the drug. If you do end up having surgery make sure the surgeon is experienced with resection of deep infiltrating endometriosis.
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So you are telling me Lupron will not get rid of it? Why am I on it for? All I know is it hurts constantly, they are telling me if they did the surgery it would leave a large hole and cause a big hernia, they dont seem to keen on surgery, should I be looking for a specialist in your opinion? Im in rural Pennsylvania, not a lot of options but can still look I guess? Thank you for responding!
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I live in vancouver,wa I read your article and bawled my eyes out last night. I called your office today and spoke to your office lady(super sweet).
I want to make an appointment to come see you but I can’t because you don’t take my medical (Molina) and I have no options to change my insurance. So now I’m heart broken.
I have had 4 c-sections. my first one in 2000 with my now 16 year old son and most recent in 2011 for my now 5 year old son. On 10/27/16 I had an abdominal hysterectomy with cervix and left ovary removal and I’m 4 months post op and I am in constant pain.
Not on pain meds. Was offered gabapetin. For twitching and pain management and I just want. My quality of life back I’m 36 years old and I can’t stand for a long period of time I hurt down my left side mainly I can be laying down and have shooting pain for no reason. My abdominal area hurts so bad. I’m in pain no energy, always sleepy no energy a have to force myself to stay awake for more then 2 hours. I wish you took my insurance!!!! I’m heart broken
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Good afternoon,
How likely is it a lipoma is misdiagnosed as iatrogenic endometriosis and vice versa. How can it the diagnosis be confirmed. How can I decrease the nerve pain( like having internal shingles), what can I take?
Thanks
Cory
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This is exactly my pain – internal shingles w a touch of sciatica in my abdomen.
How did it all work out for you?
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I read this article and just cried and cried. Finally I think I may be able to get to the bottom of my pain. I am planning on showing this article to my doctor on my next visit. I’ve been trying to figure out what’s going on for two years now and it has been difficult keeping up with two little ones on top of it. Hoping this will help them to get my life back! Thank you for writing this article!
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Hi there,
It took many doctors over 5 years and countless tests to finally diagnose my AWE. I’ve had 2 deposits taken out in the last 4 years and now the pain is back I a different area, last surgery was Sept 2016. I’m so frustrated that they keep comox g back. B/C is not helping and being 35 and have had my kids I want another option? Please help with some ideas.
Alexis
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Hi, did you ever get your Dr to listen to you about this? I hope they did. I understand your pain 😦 My son was born in 2007 from Csection. within a few months of his birth i started having pain on my left side. I brought it up to my OB and was told just scar tissue… The pain got worse and then i started feeling this lump by my scar. It got bigger and bigger. Finally had a CT scan where it showed a mass of nearly 3 inches across. I got passed back and forth between my regular dr and my Ob before my regular dr finally just said they would send me to a surgeon to have it removed since they didn’t know what it was. I had this procedure in 2010 after 3 years of symptoms and no dr would listen to me. When it came back as the Endometrioma (which i had told both drs before i thought that was what it was) I was told then it was fixed and all was well. Only a few months after the first surgery i started getting the same pain again. It got worse and worse and was even more painful then before. I just had a 2nd surgery to have it removed Yesterday. But this time I had a totally different set of Drs. They were great and understanding. My surgeon knew exactly what i was talking about when i went to see him a month ago. He said its not uncommon for it to come back if the previous dr didn’t know what it was before hand. Because they left cells of the endo behind. Letting it grow back again. At only 1 day out from surgery I could just cry! The Pain Is GONE!!! I am sore from surgery. But to go 10 years with this pain… I am so thankful that i found a Dr who would listen and understand the issue. I hope you get relief from you pain.
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This is amazing to read. Pain still gone?
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Am due to have this procedure that you have described as I have endometriosis in the stomach muscle. I had full hysterectomy and bowel reconstruction 10 years ago, this was after having IVF with no success. I have been prescribed Anastrozole for 4 months, this is making me have hot and cold flushes, feel very nauseated or sick after having food. Am very anxious about this operation, just so fed up feeling unwell and not having any energy . Am off sick for 6 months and still no idea when the operation is scheduled to take place. Feel I have no life, not able to plan anything.
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My son was born in 2007 from Csection. within a few months of his birth i started having pain on my left side. I brought it up to my OB and was told just scar tissue… The pain got worse and then i started feeling this lump by my scar. It got bigger and bigger. Finally had a CT scan where it showed a mass of nearly 3 inches across. I got passed back and forth between my regular dr and my Ob before my regular dr finally just said they would send me to a surgeon to have it removed since they didn’t know what it was. I had this procedure in 2010 after 3 years of symptoms and no dr would listen to me. When it came back as the Endometrioma (which i had told both drs before i thought that was what it was) I was told then it was fixed and all was well. Only a few months after the first surgery i started getting the same pain again. It got worse and worse and was even more painful then before. I just had a 2nd surgery to have it removed Yesterday. But this time I had a totally different set of Drs. They were great and understanding. My surgeon knew exactly what i was talking about when i went to see him a month ago. He said its not uncommon for it to come back if the previous dr didn’t know what it was before hand. Because they left cells of the endo behind. Letting it grow back again. At only 1 day out from surgery I could just cry! The Pain Is GONE!!! I am sore from surgery. But to go 10 years with this pain… I am so thankful that i found a Dr who would listen and understand the issue.
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Donna Babbie, who are your doctors? I’ve had the surgery once and feel as though it has returned. If I decide to do this surgery again, I definitely want experienced surgeons!
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I had surgery for abdominal wall endo like 20 years ago with mesh insert it.( I had 2 c-sections) Yesterday I just started having sporadic sharp pains in the exact same lower left area of my abdomen. I am 54 years old and began low-dose estrogen which has kicked me back into very light periods which I had stopped almost a year ago. Is it possible my endometrioma has come back?
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I just recently had an endometriosis mass surgically removed from my erectus abdominus muscle in my csection incision. I did also have a couple of small endometriosis areas on underside of my uterus and bladder, but doctor said they were “dead”, but could possibly come back. I would be interested in hearing your thoughts on taking depo lupron injections after the excision surgery . Is it necessary after having the endometriosis mass removed? 1st off, the injections are expensive. Secondly, the symptoms of the medication seem terrible.
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I just wanted to tell you that you are a bright light in a dark world of medicine. It is great to hear yet another doctor that listens to patients and hears their pain and helps resolve it. Bless you
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Hi, I love your dedication to this condition. My PCP, OB and surgeon didn’t seem concerned with my complaints because the lump “was likely scar tissue from my C-section”. I would like your personal opinion on the likely hood of additional pelvic endometriosis after surgical removal of abdominal wall mass showing fibroadipose tissue with aggregates of benign endometrial glands and storms consistent with endometriosis. Mild, acute and chronic inflammation with no evidence of malignancy. My concern is that there may be more to this condition than just the mass that was removed and it will continue to go Unacknowledged by my Drs. Thanks again!
Katie Burns
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In most cases, this is an isolated finding not necessarily associated with pelvic endometriosis. It may be coincident, but if so its probably unrelated rather than being part of the same disease process ( in my opinion anyway )
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Can you get a dignoses with a CAT scan?
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yes you can. An MRI is superior, but a CT also will show it
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My dr refuses surgery, says the endometrioma is to large, will leave me with a big hernia, tried treating with lupron for a year, didnt work, its attached to my bladder and surrounding area. Told me to just live with, surgery is more dangerous will cause more issues, easy for him to say, he doesnt have the massive pain
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I think you should seek out a doctor experienced with this issue. In the vast majority of cases, it is better to remove the disease and address whatever hole remains rather than leave it in place. I’m happy to help in Portland, OR if you are in the region.
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So happy to be able to find some information on this condition. My last C-section was in 2005 and I developed a random sharp, stabbing pain 7 years later, an inch or two below my C-section scar. My GP couldn’t diagnose (thought maybe a hernia?) and said it was likely scar tissue and surgery would create more. I’ve finally had an MRI and the mass has grown through the lower rectus muscle and is now 5cm x 5cm and involves the entire AP thickness of the lower rectus musculature. During the worst part of the month, it’s painful just to touch the skin on my abdomen. The OBGYN thinks surgery and all the mesh required would leave me with even more problems. I am 48.5 years old and wondering if at this point I should just wait it out until menopause occurs naturally and the mass might shrink/pain subside. I’m writing from Canada, unfortunately I would have no insurance coverage to visit you in Portland.
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Though I can’t give you specific advice, I think that your physician’s opinion is il-informed and likely influenced by his or her inexperience with this given condition, which is understandable. With proper repair you can be symptom free and are unlikely to have any problems. I would see a general surgeon and have them cut that thing out and repair the defect. It will continue to hurt after menopause most likely.
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Do you have any recommendations for a surgeon with experience on abdominal wall endometrioma removal in the Denver area? Thank you in advance.
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Hi i had a question as i am currently dealing with a mass in my abdominal wall around 6.2 . There is also a secondary mass much smaller right next to that. I was told to take lupron shots for 3 to 6 months to shrink the mass. But i am feeling hesitant as i have read a lot of bad side effects that could be long term. An thoughts on this would be appreciated
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Hello, I recently (2019) had an endometrioma removed from my abdominal wall. C-sections in 2006 and 2008, uterus out in 2011 (for pelvic pain they assumed was caused by Mirena IUD stuck in uteran wall), followed by 8 more years of drs telling me it was scar tissue. I just happened to find a hernia surgeon who knew what it was because he had excised one before. After removing it, he said it was the size of his fist, but he did not use the mesh to reinforce in case we have to go back in (wasn’t positive he got it all I guess). In the same surgery, I had an endo surgeon perform the lap with Divinci. They removed endo from the exterior of my bladder (possibly other spots… haven’t heard the details yet, as my post-op appt isn’t until next week.)
I can tell my bladder and ab wall feel better even 2 weeks after surgery, BUT…
I have also struggled with feeling endo pain in other muscles, which was explained to both surgeons, but they apparently wanted to first tackle my pelvis problems, so it was basically ignored despite my begging to keep this to ONE surgery if possible. (I am absolutely terrified of surgery, and this was my 8th! I am also financially ruined by hospital bills and at age 40, I am single with 2 kids, penniless, and rendered unable to do my physically demanding career of 20 yrs, and I now live with my mom. I cannot possibly afford any more surgeries).
As I was waking up from anesthesia, I had a full panic attack, because I was feeling fully flared endo symptoms in these OTHER muscles that had been ignored, on top of the less noticeable incision spots and normal pain. I was crying uncontrollably, couldn’t catch my breath, heart racing, I literally woke up to my worst nightmare. More pain meds in my IV didn’t touch it. After calming down, tears just streamed from my eyes for hours, as I tried to zone out and get through. I kept ice packs on these areas for 3 days straight, almost ignoring the pain in my incision spots where they had removed the endo. I stayed 2 nights because I could not get out of bed or walk without a lot of help. I couldn’t put any weight on my left leg without the pain shooting to 11, I thought I would pass out with each step.
After that the endo pain calmed down for about ten days, but now it’s ramping up again as my cycle is approaching (still have ovaries). There is no other way to describe it, I am having my period in certain muscles. When it thickens, if you massage the muscle it feels from the outside like it is in knots, yet massage therapists are baffled. You can tell a difference in size of the muscles from one side to the other. The pain is in the “groin” area? I guess (the meat of my crotch), my left side, the area just above my left leg and possibly that ligament as well, it wraps around my hip, and involves the top of my butt.
What do I do now??
Thanks for reading.
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