What you may not know about endometriosis: common questions and misconceptions

Endometriosis is a complicated illness. Those who have it often also experience delayed diagnoses, hit-and-miss treatments, and a general lack of awareness about the illness itself. Here are some answers to common questions about endometriosis.

Is endometriosis simply bad period pain?

No.
Endometriosis is a condition in which endometrial-like tissue (similar to the lining inside the uterus or the endometrium), is found outside the uterus, where it induces a chronic inflammatory reaction that may result in pain and scarring. Some people with endometriosis don’t have any pain, but many experience intense pain before, during, and after their periods. Endometriosis can cause painful periods (dysmenorrhea), chronic pelvic pain, painful sex (dyspareunia), painful bowel movements (dyschezia), painful urination (dysuria), back pain, leg pain, and shoulder pain. This pain can be so intense that it prevents normal daily activities like sitting up or walking.

Isn’t endometriosis very rare?

No.
Endometriosis is one of the most common gynecological illnesses, affecting approximately 176 million people worldwide (1). It can be a difficult condition to diagnose early, because some people don’t experience symptoms, and confirming a diagnosis requires a surgical procedure. Other people may have symptoms for years, and visit several doctors, before being diagnosed (2).

Does endometriosis only affect women in their 30s and 40s?

No.
A 2011 Global Study of Women’s Health, conducted in ten countries, showed that two thirds of women diagnosed with endometriosis had sought help for their symptoms before the age of 30, many experiencing symptoms from the start of their first period (3).

Can you catch endometriosis?

No.
You cannot catch endometriosis. It is not a disease which is “contracted” or “caused” by anything a person did—and it is not contagious. There is currently no known cause of endometriosis but it is highly suspected to be genetic (4). Sometimes people mix up endometriosis and endometritis, which is a completely different thing. Endometritis is an inflammation of the endometrium which may be caused by a sexually-transmitted infection or other types of bacteria.

Can hormonal treatments cure endometriosis?

No.
Synthetic hormonal medications like the pill, progestins, Danazol, and GnRH-analogues have been used for many years to “treat” endometriosis. However, these hormonal treatments do not have any long-term effect on the illness itself. They do temporarily reduce the symptoms, but only while the drugs are being taken. Once use of the medications stops, symptoms often return.

Does pregnancy cure endometriosis?

No.
Pregnancy—like hormonal treatments—may temporarily suppress the symptoms of endometriosis, but it does not eradicate it. Symptoms usually return after childbirth. Sometimes breastfeeding may delay the return of symptoms, but only while it is frequent and intense enough to suppress the menstrual cycle. One study of 345 women with endometriosis found that symptoms actually increased postnatally for first-time mothers (5).

Is hysterectomy a cure for endometriosis?

Not necessarily.
It’s possible to have endometriosis without having a uterus, since endometrial-like tissue can grow in many places in the pelvis (such as the lining of the abdominal cavity or bowels) to cause endometriosis. Removal of the uterus (and sometimes the ovaries too) is usually viewed a last resort, after other medications and conservative surgeries have been tried. Having a hysterectomy incurs more risks than conservative laparoscopic surgery, as complications can occur, as well as the loss of fertility, and immediate premature menopause if the ovaries are removed as well. A benefit of hysterectomy (particularly with the removal of the ovaries) is a decreased chance of needing to have re-operative surgeries in the future (6, 7). While hysterectomy may offer pain relief, this is not guaranteed forever.

Can I get pregnant if I have endometriosis?

Maybe.
Infertility or subfertility is a common symptom of endometriosis. Between 2 to 5 people out of 10 who have endometriosis are affected by infertility or subfertility (8, 9, 10). Looking at the issue from another perspective, up to 2 in 5 women who struggle with fertility have endometriosis (11). Endometriosis can cause infertility through increased inflammation, which causes damage to eggs and sperm, or through anatomical changes and scarring (11). However, this does not mean that getting pregnant is impossible for people with endometriosis, as some fertility treatments may improve chances of conception (12, 13, 14).

Wondering if you might have endometriosis?

If you have difficult or painful periods, see your healthcare provider and let them know you think something is wrong. For more information, read in detail about endometriosis symptoms, diagnosis and treatment.

You can use Clue to track pain, bleeding and other symptoms. If you think you might have endometriosis, this record can give your healthcare provider information that may help with diagnosis and in forming a management plan. Early management can reduce the risk of complications.