Endometriosis typically occurs in the ovaries and fallopian tubes. But it can develop anywhere in the body, including along or within the abdominal wall.
Endometriosis, broadly speaking, occurs when cells similar to those found in the uterine lining (endometrium) grow in other places of the body, says Heather Jeffcoat, DPT, author of ”Sex Without Pain: A Self-Treatment Guide To The Sex Life You Deserve.”
Some people with AWE won’t have any symptoms at all, according to Jeffcoat.
When symptoms do occur, they
- abdominal swelling, tenderness, or bruising
- abdominal or pelvic pain, particularly during menstruation
- a noticeable lump or mass in the abdomen
“Due to the scar tissue that can develop when you have abdominal wall endometriosis, many people also feel restrictions in movement with certain positions, such as trunk rotation or extension,” adds Jeffcoat.
Endometriosis is an idiopathic disease, which means it has no known cause — and that stands for AWE, too.
The disease seems to occur more frequently in people with a history of gynecological or obstetrical surgery.
A slightly larger study
“One theory suggests that during abdominal surgeries, endometrial tissue may get unintentionally implanted along the abdominal wall and result in abdominal wall endometriosis,” explains Purdy.
“[Another] theory of how abdominal wall endometriosis forms is the backward flow of menstrual blood through the fallopian tubes,” says Cheruba Prabakar, MD, OB-GYN, a fellowship-trained minimally invasive surgeon.
This is known as retrograde menstruation.
The idea is that drops of blood can implant at various places in the pelvis, including the side wall, bowel, rectum, ovaries, and abdominal wall, she says.
You’ll notice that the language used to share stats and other data points is pretty binary, fluctuating between the use of “male” and “female” or “men” and “women.”
Although we typically avoid language like this, specificity is key when reporting on research participants and clinical findings.
Unfortunately, the studies and surveys referenced in this article didn’t report data on, or include, participants who were transgender, nonbinary, gender nonconforming, genderqueer, agender, or genderless.
The gold standard for any endometriosis diagnosis is a laparoscopic surgical biopsy, says Jeffcoat.
Your clinician will take a sample of any growths, adhesions, or atypical tissues that endometriosis may have caused, then send it to a lab for testing.
Although experts consider a laparoscopic biopsy a minimally invasive procedure, it’s still surgery.
This could spare folks the time and expense associated with surgery and allow for a more rapid turnaround in results.
There’s currently no cure for endometriosis, but it’s treatable through surgical, holistic, and lifestyle interventions.
Full excision surgery is usually the most effective way to reduce pain associated with the disease. This involves cutting out the affected tissues and a recommended margin of one centimeter surrounding the affected area.
“But while excision surgery is a critical intervention, pain is complex, and at the point where the pain has become chronic, there’s rarely a single intervention that reverses an individual’s pain,” notes Jeffcoat.
AWE can cause painful menstruation, says Purdy.
Endometrial cells act similarly to the cells lining the uterus, which means that they can thicken, break down, and shed.
Unlike the uterine lining, which can leave the body through the vaginal canal, the endometrial cells along the abdominal wall have nowhere to go. As a result, these cells get trapped and cause painful adhesions.
“Skin changes such as discoloration or hyperpigmentation in the abdominal wall are another possible complication,” she says.
Although AWE often occurs with pelvic endometriosis, having one doesn’t necessarily indicate the presence of the other.
Experts need more research to determine whether AWE alone can affect fertility.
“While abdominal wall endometriosis can pose challenges, with appropriate care and support, individuals can find relief and continue to enjoy a fulfilling life,” says Purdy.
So, if any of the above symptoms seem familiar, talk with a healthcare professional.
Better yet, talk with one who specializes in endometriosis care. Use The American End of Endo Project Provider Directory or iCare Better expert search to find one near you.
AWE is a
Many people with AWE don’t experience symptoms, while others report pain and cramping. If you suspect that your symptoms may be related to AWE or another form of endometriosis, talk with a healthcare professional.
Gabrielle Kassel (she/her) is a queer sex educator and wellness journalist who is committed to helping people feel the best they can in their bodies. In addition to Healthline, her work has appeared in publications such as Shape, Cosmopolitan, Well+Good, Health, Self, Women’s Health, Greatist, and more! In her free time, Gabrielle can be found coaching CrossFit, reviewing pleasure products, hiking with her border collie, or recording episodes of the podcast she co-hosts called Bad In Bed. Follow her on Instagram @Gabriellekassel.