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.

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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.

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ORIGINS:

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Abdominal wall endometriosis is a predominantly iatrogenic condition, meaning that it is the result of something that we are doing – and that is a surgery that leads to implantation of endometrium into the abdominal wall.  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 also cases that arise after laparoscopy, most often in a port site.   

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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.

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While many cases are due to post surgical implantation of endometrium, a minority of cases may be spontaneous or congenital, with endometriosis implants found in the abdominal wall, likely from birth.  These most often present as umbilical endometriosis, though other locations can also occur.  In my experience, people who have this type of abdominal wall disease usually have severe pelvic disease as well.  

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DIAGNOSIS:

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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.

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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.

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Imaging studies are useful in confirming the disease, as well as for surgical planning.  The proper imaging should be an axial cut CT or contrast 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.