Frequently Asked Questions

Endometriosis is an estrogen-dependent, chronic, systemic inflammatory disease with endometrial-like tissue growing outside of the uterus. This tissue behaves similarly to endometrial tissue within the uterus, thickening, breaking down, and bleeding during each menstrual cycle.

However, it becomes trapped in the body as it has no means to exit, potentially causing cysts, irritation of surrounding tissues, inflammation, and the formation of scar tissue and adhesions.

The condition is known to cause severe pain, especially during menstrual periods. Apart from the most common clinical symptoms of endometriosis, chronic pelvic pain, severe and frequent menstrual cramps, painful intercourse, diarrhea, constipation, nausea, bloating, and infertility, women may experience a wide variety of symptoms, hence it complicates adequate diagnosis further.

Currently, diagnostic methods include invasive laparoscopic surgery, and in some cases, imaging techniques.
Women usually have to wait years for a surgery, on top of getting diagnosed with a 4-11 years delay, which is estimated to be even higher.

Laparoscopic surgery is performed using ablation, and excision techniques. It has been proven that although recovery takes longer after an excision surgery, it is much more effective compared to ablation. The latter is associated with high recurrence rate of the disease, may not remove all endometriosis lesions completely, and it is less effective for deep infiltrating endometriosis.

Unfortunately, few surgeons are trained to perform excision surgery for endometriosis accurately. Apart from the unsatisfactory diagnosis, there is no cure for endometriosis. Treatments include surgery, hormonal treatment and temporary pain relief.

The cause of endometriosis is currently unknown. Up until recently, retrograde menstruation – when blood and tissue from the uterus flows into the abdomen instead of out of the vagina – was thought to cause the disease.
However, it was recently refuted as it does not explain why, in some cases, endometriosis returns after hysterectomy, and was found in men.

Endometriosis is a complex disease, so both genetic and environmental factors are responsible for its development and progression. The disease is heritable, if one twin has it, there is a 50% chance that the other one does too.

Environmental factors leading to the development of the disease can potentially be:
– dioxin exposure
– pesticides,
– poor diet, among others,
However, none of these have a clear causal relationship with endometriosis.

Certain immune cells and inflammatory responses may also contribute to the formation and growth of endometrial tissue outside the uterus. A recent study showed that Fusobacterium may be a potential cause of endometriosis. It was detected in 60% of women with endometriosis compared to 7% of women without the disease.

Endometriosis affects ~10%, or 190 million women of reproductive age. For comparison, a very common and known condition, migraine has 12% of prevalence worldwide.

Despite the high prevalence of endometriosis, there are 4-11 years of diagnostic delay from the age of onset. 65% of women are initially misdiagnosed.

Based on a survey in the UK, 54% of people (33% women and 74% men) do not know what endometriosis is.
45% of women cannot name any of its symptoms. Hence, awareness in the public is still inadequate.

In February 2023, the European Parliament calculated an annual social expenditure of €30 billion for endometriosis-related leave for the 14 million women suffering from the disease, excluding healthcare costs.

They found in a study including data from 10 countries in Europe that the average annual total cost per woman with endometriosis was €9,579. This comprised €6,298 for costs of productivity loss and €3,113 for health care costs in 2012.

Furthermore, endometriosis costs the UK economy £8.2 billion a year in treatment, loss of work, and healthcare costs.

The annual healthcare cost burden in the USA associated with endometriosis is $22 billion. It includes $17.3 billion for direct medical costs and $4.7 billion for loss of productivity.

In Australia, the average cost for a woman with endometriosis both personally and for society is around $30,000 a year.

The consequences are severe, including significant productivity loss, infertility, mental health struggles, and the development of comorbidities. Productivity loss is a result of :
– school absences
– quitting work
– having to choose alternative career paths
– low chances of establishment in career
– lack of promotions
– financial challenges

Furthermore, 50% of women with infertility also have endometriosis. The disease is often diagnosed and treated only when women present with infertility, often a decade after suffering from it.

Regarding mental health, depression and anxiety are more common in women with endometriosis compared to others. It was proven that chronic pain is not solely responsible for this, but genetic factors. It also predispose some patients to develop these conditions.

The disease has significant effects on social life due to pain, bleeding, fatigue, depression, body image issues, and low self-esteem. The disease truly affects every aspect of life.

Women often have to organize their whole life around their period and endometriosis symptoms. See more about this on our Personal Stories page.