Video report by ITV Wales journalist Alexandra Hartley
Care for women with the gynaecological condition endometriosis is "in crisis" and needs urgent intervention from the Welsh Government, campaigners claim.
The patient-led women’s health charity Fair Treatment for Women of Wales (FTWW) says immediate action is needed on waiting lists, more specialist staff and an end to the "postcode lottery" impacting endometriosis patients across Wales.
They have backed a petition from Beth Hales from the Vale of Glamorgan, calling for the Welsh Government to improve healthcare for people with the condition in Wales.
A spokesperson for the Welsh Government said it is determined to better women's health services and is working with doctors to improve awareness of the symptoms and available support.
The petition calling on the Welsh Government to improve care for people with endometriosis was started by Beth Hales, a volunteer with FTWW and an endometriosis patient.
She realised she had to act following a discussion with her husband.
"We agreed that for the rest of our careers, we would have to work in jobs where at least one of us has private healthcare included for our children, because they are girls," said Beth.
"If they have endometriosis as I do, and things don't improve, they will be in serious trouble. We wouldn't have had to have that conversation if they were boys.
"I want women to have healthcare equality. I want them to progress with their careers rather than be signed off work while they await for diagnosis or treatment.
"I want my daughters to know they are growing up in a Wales where it is fair and equal, and they won't be penalised because of their gender."
She added: "There should be more support and understanding about this disease. It is going to be something I have to live with for the rest of my life there is no cure, there is minimal research into treatments.
"And it's not something that will necessarily just go away when I hit menopause, it's something that can carry on."
What is Endometriosis?:
Endometriosis is a common gynaecological condition, affecting at least one in ten women, girls, and those assigned female at birth.
It occurs when cells like those in the womb are found elsewhere in the body.
These cells (or 'lesions') cause localised irritation and bleeding, leading to inflammation and the formation of scar tissue called adhesions - which can pull organs out of place or stick them together, resulting in pain and organ dysfunction.
Despite being as common as diabetes and asthma, in Wales, it takes an average of nine years to diagnose - the longest of the home nations - and many patients describe being dismissed or misdiagnosed due to the lack of understanding and treatment for the condition.
FTWW has been campaigning for improved healthcare for many years; they wrote the report 'Making the Case for Better Endometriosis Treatment in Wales' in 2015.
In response, Welsh Government formed the Endometriosis Task and Finish Group and - working with FTWW and healthcare professionals - published their recommendations in 2018, stating that 'Current service provision is not meeting need, resulting in lack of access to appropriate care for women across Wales.'
Whilst some recommendations have been implemented - such as the recruitment of endometriosis nurses and pelvic health co-ordinators in each health board - others have not. Particularly those recommendations which would see more gynaecologists specialising in the condition, and equitable access to centres of excellence.
Patients and healthcare professionals alike are calling for urgent Welsh Government intervention to improve services.
Beth said: "Unfortunately, endometriosis care is now in crisis; Wales has lost a specialist from Wales' only fully-accredited specialist centre (based in Cardiff) and there are no plans to replace him.
"Referrals from other health board areas are being rejected, against NICE guidance, and patients are being forced to take out loans to pay privately - patients who are lucky enough to have their referrals accepted to the two NHS specialists are now being told they face a wait for up to seven-and-a-half years for the surgery they need.
"The system was near breaking point before the pandemic but now it has been completely decimated."
On receiving the petition, Jenny Rathbone MS said she was "pleased" to have it but "disappointed" that not all the recommendations from the 2018 report had been implemented yet.
She said: "Women are suffering tremendously and it is casting a huge shadow on their lives through no fault of their own. Welsh Government must act now to get their health needs addressed."
A Welsh Government: “We are determined to improve women’s health services and have set up the Women’s Health Implementation Group (WHIG) to do this.
"It has recently supported the recruitment of specialist endometriosis nurses in each health board to develop new ways of working to reduce diagnostic times across Wales. WHIG is also working with GPs and Primary Care teams to improve awareness of the symptoms and support available."