“Extragenital endometriosis” refers to endometriosis that affects areas beyond the genitals, such as various nerves.
“Endometriosis is a condition where the tissue that lines the uterine cavity — glandular tissue — is misplaced and studs tissues and organs outside of the uterus,” explains Karen Patrusky, a board certified OBGYN and F.A.C.O.G. in private practice for 20+ years.
“This tissue is hormonally responsive, regardless of its location, and breaks down and bleeds with each monthly cycle. This can result in debilitating cyclic pain.
“The most common organs affected by this condition are the ovary and the Fallopian tube.
“Next is the gastrointestinal system which can result in painful bowel movements and the urinary tract which can cause pain with urination and pelvic pressure symptoms.”
Which nerves can be affected by endometriosis?
“Endometriosis can cause pain by affecting nerves,” says Dr. Patrusky.
“It does this by either creating scar tissue near the nerves which can result in pain, and less commonly, by depositing and damaging the nerves directly.
“The nerves most likely affected by this condition are the nerves of the sacral plexus including the sciatic, obturator, pudendal and the gluteal nerves.
“These are a network of nerves that supply sensation to both the skin and muscles of the pelvis and lower limb.”
Sciatic nerve. Symptoms include shooting or stabbing pain going down the leg, often originating in the butt, and/or numbness and tingling in the butt, leg and/or foot. There may also be weakness in the foot.
The overgrowing uterine tissue can be right over the sciatic nerve region.
In fact, though extremely rare, endometriosis may grow ONLY over the sciatic nerve – a case of so-called isolated endometriosis.
And it’s not easy to diagnose because the symptoms are very much like those of sciatica that are caused by the far more common “pinched” nerve or tight piriformis muscle compressing against the nerve.
Obturator nerve. The pain may travel down the leg or affect the hips and groin.
Pudental nerve. Pain may occur in the anus, labia, perineum, rectum, urethra and vaginal region.
The pain may radiate beyond these locations. The discomfort may be a stabbing, numbness or painful intercourse.
Superior and inferior gluteal nerve. The pain may be in the buttocks and legs.
When the endometriosis is affecting, in addition to a nerve, the pelvic region, there’s usually the classic symptoms such as pelvic pain and intense menstrual pain, along with painful sex.
But when it’s in isolation, coming up with the right diagnosis can be vexing to the physician.
Endometriosis that affects the nerves requires a physician who is very experienced in this highly specialized area, as diagnosis can be quite tricky, and surgery (laparoscopic) will be required if medical management fails to alleviate the symptoms.
The surgical team should consist of three specialists: laparoscopic gynecologist, urologist and colorectal surgeon.
Nevertheless, endometriosis that encroaches on nerves is very rare.
Dr. Patrusky is the developer of Voila Intimate Mood Oil, a 100% organic, non-hormonal lubricant made from coconut oil infused with the purest natural herbal oils. All five formulas are vegan, cruelty-free and U.S. produced.
Lorra Garrick has been covering medical, fitness and cybersecurity topics for many years, having written thousands of articles for print magazines and websites, including as a ghostwriter. She’s also a former ACE-certified personal trainer.