'I was told it was 'just a heavy period' since I was 13 - but was diagnosed with endometriosis a decade later'

“It took me more than ten years to be diagnosed with endometriosis.

“I first went back and forth to a family doctor from the age of 13, but my symptoms were repeatedly dismissed as ‘just heavy periods’.

“Over the years I was even told I simply had a low pain threshold, when in reality I was living with debilitating symptoms that were never investigated.

“That long delay not only affected my health but left me feeling unheard and unsupported.

“Sadly, my experience reflects what so many from ethnically diverse communities still face — a constant battle to be believed.”

Those were the words of Sanchia Alasia, a trustee of Endometriosis UK, as the charity - in collaboration with Birmingham-founded gynaecological health charity Cysters took the findings of their latest study into the already excruciatingly long wait for diagnoses across the country exposed an even longer wait for women of colour.

Endometriosis is a condition where tissue similar to the lining of the uterus grows outside the womb. It can cause extreme pain, especially during periods, and may lead to fertility problems.

While it is more common for this tissue to be found on the ovaries, fallopian tubes, or other pelvic organs , recent findings have shown that it can grow in other parts of the body including the lungs, liver and pancreas.

The wait times for a diagnosis were reported to be around 7 to 8 years between 2015 and 2020. This has now increased as the latest research determined the national average as 9 years and 4 months.

But it is even longer for women of colour as on average those from ethnically diverse communities wait around 11 years for a diagnosis.

The delay is even more noticeable after seeing a specialist. Patients from these communities wait over 4 years between seeing a gynaecologist and receiving a diagnosis, compared to just 1 year and 10 months on average across the UK. This happens even though they often visit their GP sooner after noticing symptoms and are referred to a gynaecologist more quickly.

Many people feel that their background affects their care. Around 68% said their ethnicity either made diagnosis harder, caused barriers, or led to assumptions from healthcare professionals. Only a small number—just 11%—felt that healthcare providers were culturally sensitive, showing a lack of trust and understanding in the system.

Zaynah Ahmed, 20, who took part in the study, said: “As a young person, and a woman of colour, I was often dismissed and told I would grow out of it. Getting a diagnosis meant I was finally able to understand what was going on with my body”.

Now, representatives from Endometriosis UK and Cysters have taken these findings to parliament to push for change.

Neelam Heera Shergill, CEO of Cysters, said: “This report shows a truth our communities have lived with for far too long, that the delay is not just clinical, it is structural. When people from ethnically diverse communities are seeking help sooner, yet waiting longer for answers, we have to ask what is really being assessed, the symptoms, or the person in front of the clinician. Eleven years is not a statistic, it is years of pain, dismissal, and lost trust in a system that should care.

“As a South Asian woman impacted by this myself, I feel this both personally and professionally, and I feel a deep responsibility to push for change. Until healthcare truly listens, reflects the communities it serves, and confronts its own biases, these delays will continue to cost lives, livelihoods, and dignity.”

Emma Cox, CEO of Endometriosis UK, said: “Governments must tackle racial bias as a priority and ensure mandatory training is delivered across the NHS workforce. Collectively we must now work to tackle the inequalities faced and ensure this becomes a Government priority.

“Through this report, we provide ways in which Governments can and must do better. This must be the start of the conversation, not the end, and we look forward to working with Governments and NHS’s in each nation to ensure that these recommendations become a reality.”

Sarah Harris, Trustee of Cysters and Lead Researcher on the report, said: “Whilst it’s encouraging to see an increase in research surrounding endometriosis over the last few years, there is still a noticeable gap within those involved in and responding to these studies. Endometriosis can impact those from all backgrounds, and therefore it is important that this is represented in research on the disease.

“Although for many years it has been presumed that those from ethnically diverse populations have a longer journey to diagnosis of endometriosis, this sentiment has rarely been portrayed in research. This report proves what we knew all along; now it is our job to work towards changing this.”

Responding to the increasing wait times across the country, Dr Alison Wright, President of the Royal College of Obstetricians and Gynaecologists said: “This rise in the time taken to get a diagnosis is deeply concerning. Endometriosis is a serious, often debilitating, long-term condition, that can devastate women’s daily lives, yet too many are still waiting far too long for the care they need and deserve.

“With hundreds of thousands of women already on gynaecology waiting lists, we know this delay will contribute to existing delays in accessing care. "The Royal College of Obstetricians and Gynaecologists is calling on the Government to go further and faster in tackling elective gynaecology waiting lists, by promoting Women’s Health Hubs, and addressing the underlying capacity issues in gynaecological staffing and theatre capacity, which contribute to these delays.

“We urgently need sustained investment in research, to better understand endometriosis, to develop faster diagnostic tools like ultrasound and biomarkers, and more effective treatments, and to address inequalities in women’s experiences and outcomes.”

In response to the research, a Department of Health and Social Care spokesperson said: “Waiting nearly a decade for an endometriosis diagnosis is unacceptable, and we know that women from ethnic minority backgrounds typically face even more barriers to timely treatment.

“This government is determined to change that. We are renewing the Women’s Health Strategy, improving training for new doctors and, through our 10-Year Health Plan, we are cutting waiting times for gynaecology services so women get diagnosed and treated sooner.

“Endometriosis will also be prioritised through NHS Online - a new online hospital service giving patients access to expert care from home.”

NHS England was also contacted for a comment.