Why is Endometriosis So Difficult to Diagnose?

By Dr Pandelis Athanasias

Endometriosis is a painful disease which affects around 1 in 10 women, but reports have shown that it can take up to ten years to diagnose. Women with endometriosis typically experience very painful, heavy periods, pain during intimacy, infertility and a whole host of other issues. Endometriosis is a condition where tissue, which is similar to the tissue lining the womb (endometrium), begins to grow outside of the uterus. This tissue can be found in many different places including the ovaries, fallopian tubes, bowel, bladder and stomach. As such, during every period these growths will shed, setting off inflammation and scarring and habitually causing intense pain and emotional turmoil.

It is a chronic illness with no cure and as such, women need to find a way to manage the pain, often massively affecting their quality of life. Why, then, are so many women failing to get a correct diagnosis, often waiting for years and visiting their GP on multiple occasions?

It was recently reported by the All-Party Parliamentary Group on Women’s Health (WHAPPG) that UK GPs have been failing to provide accurate diagnosis for common gynaecological problems, while not giving women the dignity and respect they deserve. WHAPPG surveyed over 2,600 women with endometriosis and fibroids and found that many had failed to receive adequate care. 40% of women with endometriosis said they went for over ten GP appointments before finally being referred, whilst others complained of being told their symptoms were just “bad periods”, “part of being a woman”, or that they were overreacting.

There could be several reasons as to why misdiagnosed endometriosis is so common. Symptoms of the disease are wide and varied, affecting women in many different ways and sharing symptoms with other health problems. Sufferers have reported a range of issues from painful period cramps and painful sex, to fatigue, infertility, bloating, diarrhea and even difficulty breathing. Moreover, endometriosis cells are not detected via medical imaging and there are also no simple tests, such as urine or blood samples, which can be carried out to confirm the presence of the disease. While ultrasounds and MRI scans can help in providing clues towards Endometriosis, the only definitive way to reach diagnosis is through surgical laparoscopy. Consequently, the disease takes an average of seven years to diagnose. Perhaps the biggest problem though, is that endometriosis is a condition which is often not recognized or understood by both sufferers and medical professionals alike. It is much less widely talked about than many other health problems and there is a disparate lack of research and funding for the disease in general. Furthermore, some women may dismiss their symptoms as normal, or have admitted to being too embarrassed to talk about their problems, which suggests there is still a societal taboo surrounding the open and frank discussion of women’s issues.

Since diagnosis is more difficult for endometriosis, the most important way to handle this common health problem is through active discussion of symptoms. Women need to be aware of when things are not normal and this is why dialogue surrounding endometriosis should be more widespread. Women and health professionals must be better educated on a disease which affects 10% of the world’s women – only then can we expect to see positive changes

Dr Pandelis Athanasias is a consultant gynaecologist at The London Women’s Centre. He has several areas of expertise including endometriosis and heavy periods.