Kelly said she had been in daily pain for about three and a half years, though her symptoms started when she was a teenager.
As mother to a young son, she said it affected everything. As her endometriosis is also in her bowel, she has been told she needs bowel and bladder specialists alongside endometriosis specialists during surgery.
After her last operation she said she was woken 45 minutes later to discover a bowel surgeon had been unavailable, so her endometriosis was left untouched. Wales has spoken to another woman whose surgery was stopped in a different part of Wales, for the same reason.
On another occasion Kelly’s surgery was cut short because the theatre was needed for an urgent case.
“I was promised we’d have the whole team there and they’d get me out of pain,” she said.
“But it’s always the same excuse – they weren’t available, or they ran out of surgery time. You just think ‘why are you putting me through an operation if you haven’t got the surgery time?’
“Every time they go in I’m getting more and more scar tissue from these surgeries. As you can imagine, I’ve lost faith.”
She said discussions were had about transferring her care to Bristol, but she was then told one of the other specialist centres in Wales would treat her.
The wait could be up to two years, she said, depending on clinical need.
“I’ve put so much on hold, I just want my life back,” she said.
As a healthcare professional, Kelly said she had seen really good care in other parts of the NHS, yet felt “women’s health is just completely broken”.
Earlier this year Cardiff and Vale health board added their specialist endometriosis centre to their risk register, citing that changes by the BSGE could cause its closure unless changes were made to meet accreditation criteria.
Lutfi Shamsuddin, one of the team of endometriosis surgeons at the centre, told the cross-party meeting the issues centred around allocating dedicated time for a multi-disciplinary team to be involved in complex cases, and ensuring surgeons performed a minimum number of operations per year.
He said limited access to sufficient theatre time meant individual surgeons may be unable to carry out the volume of work required to meet the threshold for BSGE accreditation.
In addition, all accredited centres must have named gynaecologists, specialist nurses, colorectal surgeons, urologists and radiologists with time dedicated in their rota for endometriosis care at least six times a year.
However, he said his own centre relied on “the goodwill” of a radiologist or urologist when required, rather than having those roles planned into the endometriosis service.
It is estimated about one in 10 women have endometriosis. Shamsuddin said about 60% of patients can have their care managed by GPs in the community, however 40% are referred to hospital gynaecology teams.
For cases deemed to be “deep infiltrating endometriosis” which affects other organs such as the bladder and bowel, women in south Wales will be referred to one of two BSGE accredited centres. Cases in north Wales are sent to hospitals in Liverpool or Chester.
Cardiff and Vale also considers referrals from Cwm Taf Morgannwg, while Swansea Bay will receive referrals from Hywel Dda. Aneurin Bevan is understood to be seeking accreditation, and will consider referrals from Powys.
Gynaecologists told the meeting that the acute challenges in Cardiff “could easily be replicated by other centres in Wales”.
Shamsuddin warned that losing accreditation would mean patients would be sent for care in England, at a higher cost to NHS Wales.
Abigail Holmes, clinical board director for women and children at the health board, told the meeting they were “working incredibly hard to make sure our service does not collapse”.
She said “the only way the service can survive” was for it to be a nationally commissioned service by NHS Wales’ joint commissioning committee (JCC).
The meeting heard representations have been made to the JCC by the gynaecology clinical improvement network, which is part of NHS performance and improvement, pressing the need for a pan-Wales approach.
Endometriosis services were discussed in June 2024 as a possible area to be commissioned by the JCC, however as no new investment was made available for 2026-27, national services were not established.
A spokesperson said it recognised the concern, but responsibility currently remains with individual health boards. It said it would continue to work with the Welsh government, health boards and others to support discussions.
The concerns about the future of the centre at Cardiff and Vale health board have prompted a petition, which has already reached more than 11,000 signatures.
David Fluck, executive medical director at the health board, said: “We recognise the importance of BSGE accreditation and are actively working towards reaccreditation when our current accredited period expires.
“We want to reassure patients that our endometriosis service is a core-funded health board service. We are working towards longer-term service sustainability and improvement in line with the women’s health plan, with the needs of our patients at the heart of these discussions.”
Swansea Bay University Health Board has not placed its service on a risk register, however it too has challenges around theatre capacity, workforce and sustainable multidisciplinary support for complex surgery.