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Meet The Women Fighting To Improve Welsh Endometriosis Care

Madeleine Anderson
Woman in a hoodie curled up in pain [endometriosis Wales]

Madeleine Anderson

Women with endometriosis are forming support groups across Wales, offering advice and creating communities for those living with the often overlooked condition. 

Katie Jackson was 10 when her first period arrived, accompanied by an intense and unfamiliar pain. Despite major distress and worsening agony, Katie was told that she just had “bad periods” which were “normal” and something she’d “get used to.”

Now 25, Katie suffers daily from pain which was recently diagnosed as endometriosis, a chronic disease which causes cells to grow outside the lining of the uterus. It impacts around one in ten people assigned female at birth. 

Katie is a fully qualified primary school teacher from Wrexham. However, she has had to stop full-time work and struggles to complete everyday tasks like cooking because of her illness. 

“It’s upsetting because I want to be a teacher. I am a teacher, I trained to be a teacher but because of my condition, at the moment, I just can’t do it,” Katie explained. 

Dismissed, Ignored and Belittled

For years, Katie felt ignored and overlooked by doctors who repeatedly told her that she did not have endometriosis. They said that the growths in her womb were a consequence of her Polycystic Ovary Syndrome (PCOS), but nothing else was wrong.

“I was the one who first brought endometriosis to the doctor, but there is only so much you can protest. … I remember having an argument after I went to A&E because the pain got so bad, but I was told over and over again that I didn’t have endometriosis when I was sure I did.” 

Katie’s pain became so severe that she signed onto an NHS waiting list for a laparoscopy, a surgical procedure used to examine internal organs. Katie was given a wait time of six months, and two years later she was still waiting. With debilitating discomfort and no operation in sight, Katie booked a private operation that was paid for by her Nana in July 2023. 

“I started to cry because I knew I had it, even after all those years of gaslighting and lies.”

“When I woke up from the operation I remember seeing the nurse and the doctor who told me I did have endometriosis, and that it was found across my body including my ovaries, my bladder and my rectum.

“I started to cry because I knew I had it, even after all those years of gaslighting and lies,” Katie said. 

Katie described herself as in a “bad place” after the surgery, with unexpected bladder issues arising as a consequence of the invasive procedure. She had been told she would feel better after surgery and would be able to return to work within two weeks. Yet Katie’s pain continued, worsened by the isolation of recovery without relief. 

Image courtesy of Katie Jackson. No changes were made to this image.

Fighting Endometriosis Stigma

Heatherjane “HJ” Dangerfield, Welsh Development Coordinator at Endometriosis UK, told Empoword: “Sometimes it’s just about knowing you’re not going mad.”

Alongside raising awareness of how endometriosis affects people’s bodies, lives and relationships, HJ sees the removal of shame as crucial to improving endometriosis care in Wales. She plans to increase the number of posters and information leaflets discussing endometriosis at doctors surgeries and clinics. 

“By the time many people with endometriosis go to the GP they’re so exhausted that they don’t really hear what the GP is telling them. … Adding more posters could trigger people to think about endometriosis, raising awareness among doctors and patients. It’s about building healthcare relationships and supporting continuing communication and care.”

She added that even when doctors have “suspicions,” lack of consistent communication often delays diagnoses and support.

Waiting times for an endometriosis diagnosis have worsened in recent years. Many wait up to nine years to be diagnosed in the UK, up from an average of eight years in 2020. Welsh waiting times are especially poor, at nearly a decade for a formal diagnosis. 

The Shock of Diagnosis

For 32-year-old Danielle Woodberry from Swansea, an endometriosis diagnosis came as a shock that followed years without answers.

“I’d always had problematic periods and was going back and forth to the doctors, but there was never anything investigated,” she said. 

After reading a book exploring the long-term side effects of taking the pill, Danielle decided to move away from contraceptives.

“Within about eight months I started to notice a dull ache that was there all the time, and it was only in autumn of 2022 that I noticed the pain was getting stronger to the point that it was unbearable. … Nobody could figure out what was going on, you almost feel like you’re making things up because I was in so much pain that I felt like I’d been shot.” 

Image courtesy of Danielle Woodberry. No changes were made to this image.

Like Katie, Danielle eventually sought private medical care and was soon diagnosed with stage four endometriosis — the most severe stage of the condition. 

“You’re brought up thinking to go to the doctor if something isn’t right. At this point, nobody had been able to diagnose me, so I felt at a complete loss,” she said.

“It was a very difficult journey. When I did get that diagnosis I felt really let down. There was a conversation about having a colostomy bag, or whether my fertility would be impacted… I was 31, and at that stage in your life those things are a real shock, I had to put everything on hold.” 

A Community For Women With Endometriosis In Wales

After receiving her diagnosis and going through surgery, Katie decided to set up an endometriosis support group for people living in Wrexham and the nearby areas. 

“I think everyone needs to be involved in the conversation so it’s not such a taboo topic. If you can try and look after your mental health, if you have someone to speak to, it does make everything that little bit better,” Katie explained. 

Just over a month old, Katie’s Wrexham Facebook group already has over 200 members who have all been affected by endometriosis. Some have shared their experiences of medically induced menopause. Others have been offering tips on the pill, which is often prescribed to those with endometriosis. The first in-person group meeting will take place in a Wrexham café next month, with the hope that later gatherings will feature advice from medical professionals, pelvic floor therapists and yoga instructors. 

Danielle is working alongside Katie and HJ, delivering support on behalf of Endometriosis UK in Wales. She heads the recently launched Swansea support group, which currently has between twenty and thirty members.

“When you tell people you have endometriosis they still look at you like you’ve got two heads, but it’s as common as diabetes which everybody knows about.

“Not having the correct support for endometriosis diagnosis has a huge impact on your mental health and that is one of the biggest issues, when you’ve got that rally of people around you who know about it, understand it and get it, that’s going to go hand in hand with making sure people aren’t suffering, not just physically but mentally.

“That’s the mission I’m on,” says Danielle.

You can find more information on endometriosis and your nearest support group on the Endometriosis UK website.

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Featured image courtesy of Polina Zimmerman via Pexels.  No changes were made to this image. Image license available here.

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