Multiple factors delay timely endometriosis diagnosis, study shows

Reviewing qualitative studies from the past 20 years, the researchers found a range of contributing factors including: a continuing stigma around periods; society’s normalisation of menstrual pain; and a lack of medical training about the condition.

Endometriosis, which affects 10% of women globally and 1.5 million women in the UK alone, is caused by endometrial (womb) tissue growing outside the womb. It’s extremely painful, exhausting, interferes with daily life and can lead to infertility if untreated.

The researchers found that women in the studies often weren’t sure if their pain was unusual or severe enough to seek treatment. When they did, some found that their GP was doubtful, or even dismissive of their symptoms. GPs in two of the studies themselves admitted that they found it difficult to differentiate problematic pain from ordinary menstrual symptoms.

Dr Sophie Davenport, who led the research and is now working as a doctor in the NHS, says: “Society has traditionally normalised period pain, so we need to rethink what constitutes ‘non-normal’ periods. If symptoms are affecting daily life, where the woman is not going to work or school, or unable to carry on a social life, that’s a clear sign that medical intervention is needed”.

Many GPs in the studies reviewed mentioned a lack of knowledge about endometriosis, with some saying they’d had scant training in medical school about it. Endometriosis symptoms can vary widely and overlap with other common conditions, so the signs can be difficult to spot.

Dr Davenport says: “Given the numbers of women affected, we think there should be additional, mandatory training about menstrual conditions during medical school. At present, as little as 4 weeks out of 5 years of medical training may be spent on gynaecology; and during that time, endometriosis may barely be mentioned. Given that 1.5 million women in the UK are affected, we think it’s time to prioritise this.”

Even if suspected, the definitive method of diagnosis has been by laparoscopy under general anaesthetic, so some practitioners have been reluctant to order such an invasive procedure. However recent ESHRE guidelines now recommend a two-step approach in which treatment is started more quickly, based on clinical suspicion and MRI/ultrasound imaging,  rather than waiting for laparoscopic findings. Supervising author Dr Dan Green, Senior Teaching Fellow at Aston University’s College of Health and Life Sciences, adds: “It will be interesting to see if these new ESHRE guidelines affect the existing time to diagnosis, and can improve patients’ experiences in future.”

Emma Cox, CEO of Endometriosis UK, comments: "We hear many stories at Endometriosis UK evidencing the points this research highlights. The study underlines once more that those with suspected and diagnosed endometriosis are being consistently let down. I urge Government to use these findings to drive forward real action towards ensuring greater, faster and easier access to medical professionals with a specialist interest in endometriosis across England, Scotland, Wales and Northern Ireland.”

She continues: “It’s important that women experiencing chronic pelvic pain or other symptoms of endometriosis speak to their GP, and when they do they should expect to be listened to, believed and understood. We have heard many stories of such symptoms being shrugged off as 'normal', 'not serious’ or 'just part of being a woman'. These attitudes are changing, but sadly we still have some way to go."

‘Barriers to a Timely Diagnosis of Endometriosis: A Systematic Review and Qualitative Synthesis’ will be published in ‘Obstetrics & Gynaecology’ on July 6 2023.