"I can’t live like this": Manx woman speaks out about years of chronic pain from endometriosis

31-year-old says condition dominates daily life as complaint to Manx Care remains unresolved months later

A woman living with severe endometriosis on the Isle of Man says years of chronic pain and difficulties accessing treatment have left her feeling “worn down” and unheard by the healthcare system.

Chloë Love, 31, has been speaking to Manx Radio about her ongoing experience with the condition, which she says began when she was 12 years old.

Endometriosis is a disease where tissue similar to the lining of the womb grows elsewhere in the body and can cause severe pain, heavy periods and fertility problems.

Miss Love says the condition now dominates much of her day-to-day life.

“All I do is make sure I can get to work and manage to some level, and get home safely. Then I basically crash out and have to rest and sleep, and repeat”, she said.

“The weekend is wiped out by having to rest up and get ready for work the following week.”

She says people often underestimate how debilitating the illness can be because it is largely invisible.

“Because I look okay and don’t have crutches or anything to highlight my illness, people assume I am fine. But internally my ovaries and uterus are being twisted out of shape. Any sort of movement causes extreme pain.”

Miss Love underwent excision surgery in London in May 2025 with a leading specialist in the condition, after paying around £8,000 privately - money she says represented her life savings.

However, she says recent scans suggest the symptoms have returned and she now feels she is “back to square one”.

She claims the decision to seek private surgery followed a conversation with Manx Care in which she was told she did not have endometriosis, despite previously being told by a gynaecologist earlier in 2025 that she did.

Miss Love says footage from the surgery showed endometriosis in numerous locations.

“I have all of the proof to show I was right,” she said.

She has since attempted to make a formal complaint through the Manx Care Advice and Liaison Service (MCALS) about the revocation of her diagnosis.

According to Miss Love, the complaint was submitted in October 2025. She says Manx Care’s policy states complaints should normally be resolved within 20 working days, but she was informed on the 20th day that her case would take longer.

She claims she has since repeatedly contacted the organisation for updates.

“It’s now at the point where I don’t get any response,” she said. “If I do it’s very brief and the same response I heard back in December - that they’re in the process of dealing with it.”

Miss Love has also contacted both Manx Care’s Chief Executive Teresa Cope and the Health and Social Care Minister Claire Christian.

Manx Radio has seen email correspondence between Miss Love and the two officials.

She says she has yet to receive what she considers a satisfactory response.

Endometriosis affects around one in 10 women, according to the World Health Organisation, but Miss Love says navigating the healthcare system has been “a minefield”.

“I’m astounded by how difficult this has been. If it’s such a common condition, why am I being stonewalled at any opportunity to get help?”, she said.

She also told Manx Radio that the condition can affect multiple organs beyond the reproductive system, including the bladder, bowels and diaphragm.

“In severe cases it has even been found in the brain,” she said. “It’s a whole-body disease - it’s not just reproductive.”

Miss Love says what she would like most is simply to be listened to:

“Please listen to people who take the time to tell you their story and let you know their experience. We don’t want to be going through any of this.

“The amount of years of experiences that I have lost. I have lost jobs, I have lost relationships, you name it and I’ve probably lost it at this point, but that doesn’t seem to count for anything.”

Manx Radio approached Manx Care for comment. A spokesperson provided a statement:

"Living with chronic pain and uncertainty around a condition such as endometriosis can be extremely challenging, and Manx Care is very sorry to hear about the experience that has been described.

"While we are unable to comment publicly on an individual patient’s care or complaint, concerns raised through the Manx Care Advice and Liaison Service are taken seriously.

"Where investigations take longer than the standard timeframe, patients should be kept informed, and we are keen to ensure this happens consistently. More broadly, we recognise the significant impact endometriosis can have on people’s lives and remain committed to listening to women and improving care. This includes learning from lived experience through initiatives such as the In Your Shoes listening events and ongoing work to improve pathways as part of the Island’s Women’s Health Strategy.

"We continue to welcome engagement with patients, families and support groups to ensure that services are shaped by the voices of those who use them."

Listen to Chloë in conversation with Christian Jones via Manx Radio's Newscast: