“I have been on the waiting list for five years and now I am told that no operation is planned for my endometriosis”
A woman from Rhondda Cynon Taf has shared her disappointment that the NHS is not offering any operations for people with endometriosis as it tries to tackle waiting lists. This week the Welsh Government announced a strategy to ‘transform’ planned care and reduce waiting times for the National Health Service. Health Minister Eluned Morgan has confirmed the government will provide an additional £60million, £15million a year over the next four years, to health boards.
Sarah Cummings, 46, from Talbot Green has been on a waiting list for five years. An operation, which was to take place in March 2020, was canceled due to the coronavirus pandemic.
Read more: “I had to have a hysterectomy at 28 due to a distressing condition”
Six months ago she was asked by a medical secretary if she would be willing to travel to Spire Healthcare for treatment as the NHS was paying for people to get private treatment to clear the backlog. Sarah said she agreed but received no further information. This week, her consultant told her 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 perform thermal ablation and excision, in other words to burn and break down the disease. Endometriosis occurs when tissues similar to the lining of the uterus begin to grow in other places such as the ovaries and fallopian tubes.
Each month, these cells react in the same way as those of the uterus, accumulating and then breaking down and bleeding. Unlike cells in the uterus which leave the body during menstruation, this blood has no way to escape, causing chronic and sometimes debilitating pain and affecting fertility and other parts of the body such as the intestine. or the bladder.
The condition affects one in 10 women in the UK and at the moment there is no cure. In March, the Welsh Government announced that specialist endometriosis nurses had been appointed to every health board in Wales to improve services for the chronic condition.
“I had endured painful, heavy periods for years, but it was dismissed by medical professionals as something some women had,” Sarah told WalesOnline. “After the birth of my second child, I bled continuously for a year and finally went private. The consultant I saw mentioned endometriosis within the first five minutes and a fortnight later he m ’ got on her NHS list for a laparoscopy where I got my diagnosis.”
According to Sarah, the pain she endures due to the disease is constant. The product trainer added: “It’s never right. Mine isn’t cyclical, it’s constant.
“It disrupts my sleep, impacts every facet of my life. I can’t plan anything – when I do I constantly let people down, cancel things at the 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 help him go to football, for example when I am unable due to pain. As for work, I take a lot of sick leave, often at the 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, because I was so focused on the goal of having surgery, being told now that I’m not getting it crushed me. There’s no light in the end of the tunnel for me.”
At the start of the pandemic, the majority of appointments and treatments were postponed to allow 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, particularly in hospitals, have dramatically reduced the number of scheduled appointments and surgeries that can be carried out.
As Wales moves beyond the emergency response to the pandemic, the Welsh Government has said the way the NHS provides some care will need to change permanently. This includes people who only come to hospital when they need care, advice or services, which cannot be delivered as close to home as possible.
The plan sets a goal for 35% of all new appointments and 50% of follow-up appointments to be delivered virtually in the future to help free up clinicians’ time so they can see and treat more patients. In addition, an online website will be created where patients can get the information and support needed to manage their own conditions, help people manage their own health, and reduce the number of people who need to be readmitted to hospital for a treatment.
Over the years, Sarah has taken a wide range of birth control pills and undergone colposcopies, hysteroscopies and “chemically induced menopause” to ease the pain she endures day to day. Amid recent news of the Welsh Government’s plan to tackle the NHS waiting list, Sarah was told by her consultant that there were no operations for people with endometriosis.
She said: “The hospital told me several times that I was ‘top of the list’ but nothing happened. When I went to the hospital on Monday I was expecting someone gives me a new date for the operation. To say the operations have completely stopped for patients with endometriosis completely floored me. I immediately burst into tears. There is no hope and nothing to make me to advance”.
According to Sarah, more needs to be done to help and support people struggling with endometriosis, as well as to educate people about the disease. She said: “Girls need to learn what is normal and not just accept excruciating pain. GPs need to know more 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’s far from funded.
“And on funding. Major improvements need to be made there. More places with specialists. Innovation in surgery and treatment. Nothing has changed in the 20 years since my diagnosis. We’re letting go generations of women and girls. It’s terrible it sounds a 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 cannot afford and in all honesty, which simply perpetuates the problem and creates a two-tier system for patients. Women are being let down by the NHS and the NHS is being abandoned by politicians.”
In response, the Minister of Health during a plenary session at the Senedd on Tuesday said: “Endometriosis is an area that I have really tried to focus on because it has been neglected for too long. It is the one of the reasons why at the end of this term, I will present a health plan for women.
“I think it’s really important that we focus on women’s health. There are so many areas that we need to understand – what does diabetes mean in women, asthma in women, autism in men? We need to have feminine lenses on all of these conditions.
“Endometriosis is an area that we have already been in place for several years and are already starting to work. We already have experts in terms of endometriosis nurses in every board of health, of course we need more of surgeons who are able to deal with this. It’s all part of the plan, we can’t change it overnight, but those plans and those nurses are in place. There’s still a lot of work to be done on the endometriosis, but I’m happy with the progress we’re making.”
Cwm Taf Morgannwg University Health Board said it was unable to discuss individual cases, but encouraged all patients to contact them directly to discuss their concerns. To get more news like this straight to your inbox, subscribe to our newsletters, including our Wales Matters newsletter here.