Support group founder wants endometriosis recognised as chronic condition

An Inverness woman who has been in hospital approximately 50 times in 13 years is calling for endometriosis to be recognised as a “legitimate, chronic condition”.

Fay Cartwright, 34, launched the support group InverEndo Support as a “safe space” for women with endometriosis after her own feelings of isolation with the condition.

The NHS website describes endometriosis as a condition where cells similar to those in the lining of the womb grow in other parts of the body, with symptoms including heavy periods and severe period pain as well as pain in the stomach and back.

She said: “March is endometriosis action month and, given the lack of action I’ve seen locally and nationally, I wanted to do something.

“So, I have launched InverEndo Support – a support group open to all women in Inverness and the surrounding areas with endometriosis or awaiting a diagnosis.

“I find endometriosis isolating at times and have really struggled with my mental health, and I don’t want others to feel how I have felt over the years.

“My hope is that the group becomes a safe space for women with endometriosis, giving them somewhere local to lean into and potentially, together, taking action to campaign for improvements to endometriosis care.”

The condition affects one in 10 women in the UK, according to Endometriosis UK.

Ms Cartwright, who is a nurse, has been admitted to hospital 29 times due to the condition since 2021.

However, she said she has been told “it’s all in my head” and “it’s just a bad period”.

She said: “If I had to count from the age of 21 onwards, it would probably be closer to 50 hospital admissions.

“The care I’ve received has been mixed. I’ve been told that there’s nothing wrong with me, it’s all in my head and it’s just a bad period. I’ve also been told to have a baby, radical surgery or try various contraceptives to ‘cure’ my endometriosis.

“I’ve been told that it’s ‘normal’ to have excruciatingly painful periods and some women ‘just have heavy periods’.

“Some consultants have an exceptional manner and really care about their patients, and make me feel heard, but, unfortunately, they are in the minority.”

InverEndo Support aims to have monthly meet-ups where those who have the condition or suspect they do can discuss their experience over coffee, trips to the cinema, walks, community saunas or other organised events.

Ms Cartwright said: “I would like to see faster diagnosis, positive patient care and a broader variety of supportive resources available to patients instead of a generic one-size-fits-all approach as the condition affects everyone so differently.

“We need better co-ordination between health services, trained with better knowledge of endometriosis to be able to hold clinics in the community, addressing both the physical symptoms and the challenges of access, understanding and long-term care.

“In order to make change, we need to recognise endometriosis as a legitimate, chronic condition; provide timely diagnosis and specialist access; offer multi-disciplinary support similar to other long-term illnesses; empower patients through education and self-management; and reduce travel and access barriers in rural areas.

“While I hope these issues can be recognised and addressed, I hope that the InverEndo Support group will help other women suffering from endometriosis locally and inspire others across the UK to do the same. Together we can make a real impact.”

The Scottish Government has been approached for comment.