Within this website, we use the terms ‘woman’ and ‘women’ but it is important to note that endometriosis can affect all assigned female at birth, including transgender men and non-binary people (not only those who identify as women)
About Endometriosis
Endometriosis can have a destructive impact on quality of life, participation in daily and social activities, physical and sexual functioning, relationships, educational and work productivity, mental health, and well-being.
It causes serious and debilitating symptoms, such as chronic pelvic pain, pain with menstruation, and pain during sex, urination and bowel movements.
Many endometriosis sufferers also have trouble getting pregnant and suffer from fatigue.
A hallmark of endometriosis is the presence of tissue like the womb lining (‘endometrial-like’) outside the uterus (womb), most commonly in the pelvis. The three commonest subtypes of pelvic endometriosis are (1) superficial peritoneal, (2) ovarian (endometrioma or ‘chocolate cysts’) and (3) deep disease. Endometriosis can also occur outside the pelvic cavity, for example the chest (thoracic endometriosis), caesarean section scars and umbilicus (‘tummy button’).
It is estimated that at least 190 million individuals may have endometriosis worldwide but this is probably an underestimate.
Although some cases can be diagnosed with imaging, there are currently no reliable blood tests for endometriosis and many people have to wait for surgery to look inside the pelvis (laparoscopy) for endometriosis lesions to make the diagnosis.
Individuals with endometriosis often wait many years for a diagnosis.
The main treatments are surgery to remove the endometriosis, although symptoms often come back, or hormone treatments that can cause unpleasant side effects.
Many individuals try changes to their diet and/or exercise to control their symptoms, but there is very little research on whether this is effective.
Over the course of a lifetime, the daily challenges of endometriosis may translate into limitations in achieving life goals, such as pursuing or completing educational opportunities, making career choices or advancing in a chosen career, forming fulfilling relationships, or starting a family.
Endometriosis can end careers.
- Women who had surgery for endometriosis were 85% more likely to be unemployed 3 years post-diagnosis
- 63% of full-time working women surveyed who had endometriosis surgery fell to 44%
- 89% of women with endometriosis surveyed noted a loss in productivity at work
Up to one third of women with endometriosis suffer from infertility.
You can help – donating or contributing to the ENDO1000 research project can have a material difference on the future of those with this disease.