A woman from Rhondda Cynon Taf has shared her disappointment that the NHS will offer no operations for people with endometriosis as it bids to tackle waiting lists. This week, the Welsh Government announced a strategy to "transform" planned care and cut waiting times for the National Health Service. The Health Minister, Eluned Morgan, confirmed that the Government will provide an extra £60m, £15m a year over the next four years, for health boards.
Sarah Cummings, 46, from Talbot Green has been on a waiting list for five years. An operation, due to take place in March 2020, was cancelled because of the coronavirus pandemic.
Read more: 'I had to have a hysterectomy aged 28 due to agonising condition'
Six months ago, she was asked by a medical secretary if she'd be prepared to go to Spire Healthcare for treatment as the NHS were paying for people to get private treatment to clear the backlog. Sarah said she agreed but received no further information. This week, she was told by her consultant that there would be no operations available for people with endometriosis.
Sarah was diagnosed with endometriosis 20 years ago after a laparoscopy - an operation to give thermal ablation and excision, in other words to burn and break down the condition. Endometriosis is when tissue similar to the lining of the womb starts to grow in other places such as the ovaries and fallopian tubes.
Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period however, this blood has no way to escape – causing chronic and sometimes debilitating pain as well as affecting fertility and other parts of the body such as the bowel or bladder.
The condition affects one in 10 women in the UK and at the moment there is no cure for it. In March, the Welsh Government announced that specialist endometriosis nurses were appointed in each health board in Wales to improve services for the chronic condition.
"I had endured painful, heavy periods for years but they were dismissed by health professionals as just something some women had," Sarah told WalesOnline. "After the birth of my second child I bled continuously for a year and eventually went private. The consultant I saw mentioned endometriosis in the first five minutes and a fortnight later he put me on his NHS list for a laparoscopy where I had my diagnosis."
According to Sarah, the pain that she endures due to the condition is constant. The product trainer added: "It doesn't ever go. Mine isn't cyclic, it's constant.
"It disrupts my sleep, impacts on every facet of my life. I can't plan anything - when I do I am constantly letting people down, cancelling things last minute. I feel like a complete failure. I miss things with my children.
"My youngest is 15 and I often rely on others to give him lifts to football for example when I am unable due to my pain. Work wise I take a lot of sick leave, often last minute which I feel so guilty about. My company is incredibly supportive and understanding. But the guilt I feel for letting people down sometimes overwhelms me.
"Mentally it's impossible as I have been so focused on the goal of getting surgery, to be told now I'm not getting it has crushed me. There is no light at the end of the tunnel for me."
At the start of the pandemic, the majority of appointments and treatments were postponed to enable the NHS to focus on caring for the large number of people with Covid-19. Subsequent waves of coronavirus infections have also affected activity levels in the NHS. Infection control measures in the NHS, especially in hospitals, have greatly reduced the number of planned appointments and surgeries which can be performed.
As Wales moves beyond the emergency response to the pandemic, the Welsh Government said the way the NHS delivers some care will need to change permanently. This includes people only going into hospital when they need care, advice or services, which cannot be delivered as close to their home as possible.
The plan sets the goal of 35% of all new appointments and 50% of follow-up appointments being delivered virtually in future to help free up clinicians' time so they can see and treat more patients. Furthermore, an online website will be created where patients can get the information and support to manage their own conditions, helping people to manage their own health and reducing the number who need to be readmitted to hospital for treatment.
Over the years, Sarah has taken a wide range of contraceptive pills, and undergone colposcopies, hysteroscopies and 'chemically induced menopause' in order to relieve the pain she endures from day to day. Amid the recent news about the Welsh Government's plan to tackle the NHS waiting list, Sarah was told by her consultant that there were no operations for those with endometriosis.
She said: "I've been repeatedly told I'm 'top of the list' by the hospital but nothing happens. When I went to the hospital on Monday, I was expecting to be given a new date for surgery. To be told operations have completely stopped for patients with endometriosis has completely floored me. I immediately burst into tears. There's no hope and nothing to keep me going".
According to Sarah, more needs to be done to help and support people dealing with endometriosis, as well as educating people about the condition. She said: "Girls need to be taught what is normal and not to simply accept excruciating pain. GPs need to learn about endometriosis, symptoms and treatments. So many doctors have never heard of it. 10% of women have this - it's as common as asthma and diabetes but it gets no where near the funding.
"And onto funding. Some major improvements need to be made there. More places with specialists. Innovation in surgery and treatment. Nothing has changed in the 20 years since I was diagnosed. We are failing generations of women and girls. This feels an awful lot like sexism to be quite frank and it's completely unacceptable.
"I now have to explore the option of private treatment, which I really can't afford and in honesty, that simply perpetuates the issue and creates a two tier system for patients. Women are failed by the NHS and the NHS is being failed by politicians."
In response, the Health Minister at a Plenary at the Senedd on Tuesday said: "Endometriosis is an area I have really tried to focus on because it has been neglected for far too long. That is one of the reasons why by the end of this term I will be presenting a women's health plan.
"I think it's really important that we focus on women's health. There are so many areas where we need to understand - what does diabetes in women mean, asthma in women, autism in women. We need to have a women's lenses on all these conditions.
"Endometriosis is an area we have already implementation that has been set up for a number of years and they're already starting to deliver. We already now have experts in terms of endometriosis nurses in every health board, of course we need more surgeons that are able to deal with this. It's all part of the plan, we can't switch it over night but those plans and those nurses are in place. There's a lot more work that needs to be done about endometriosis, but I am pleased with the progress that we are making."
Cwm Taf Morgannwg University Health Board said that they were unable to discuss individual cases, however they did encourage all patients to contact them directly to discuss any concerns they have. To receive more news like this straight to your inbox, subscribe to our newsletters, including our Wales Matters newsletter here.
