“Extragenital endometriosis” refers to endometriosis that affects areas beyond the genitals, such as nerves.

Endometriosis is an overgrowth of uterine-like tissue that can extend beyond the uterus and impact the pelvic nerves.

Nerves Affected by Endometriosis
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.

Obturator nerve. The pain may travel down the leg or affect the hips and groin.

Superior and inferior gluteal nerve. The pain may be in the buttocks and legs.

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.

When the endo is affecting, in addition to a nerve, the pelvic region, there’s usually the classic symptoms of endo 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 treating physician.

Nevertheless, endometriosis that encroaches on nerves is very rare.

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.

Sources:
endometriosisaustralia.org/single-post/2017/04/24/Endometriosis-in-and-around-the-nerves-%E2%80%93-What-can-be-done
nezhat.org/specialties/treatments-procedure/nerve-damage-caused-by-endometriosis.html