Derbyshire woman calls for urgent improvement in endometriosis care as waiting lists grow
A woman is calling on NHS services to improve support for patients with endometriosis after enduring a nine year battle for treatment and the life-changing decision to have a hysterectomy aged 22.
Maddy Howarth, now 26, says she was left with no other escape from the pain which had caused her to lose her job, home and hopes of a carefree youth. But now she is using her voice to campaign for change on behalf of other women still struggling for treatment, especially in the wake of Covid.
She said: “This may not have the potential to kill you like cancer, but it destroys your quality of life and can cause permanent damage. I want to make some noise for the women in our area who are desperate for this care and need it. We are expected to live in constant pain.”
Around 1.5million people in the UK are thought to live with endometriosis, which occurs when tissue similar to the lining of the womb grows in other parts of the body. Each month, it builds up, breaks down and bleeds – but unlike a normal period, it has no way to escape.
The condition can cause inflammation, pain and the formation of scar tissue eventually leading to infertility and problems with other pelvic organs such as the bladder and bowel.
Maddy’s problems began at age 13, and by 17 she was visiting A&E every month due to both the pain and the effects of the morphine she was on to manage it – but still had no diagnosis.
She said: “My mum had endometriosis so we thought something similar was happening. Everything pointed in that direction but whenever I saw a GP it felt like they didn’t take it seriously and refused to refer me to a specialist.
“There is a massive gender health gap, women are just not listened to. I took control of my situation. If women aren’t loud enough, their situation can get dire.”
Persistence eventually paid off and Maddy, from Birch Vale, was referred to a gynaecologist. Still, time dragged on.
She said: “The waiting list for investigative surgery has now grown to three years and while a lot of conditions have been neglected due to the pandemic, this has been neglected for as long as I have lived through it.
“It was the first area of the NHS to have clinics and surgeries cancelled due to Covid and the last to resume normality. The only part-time consultant in the High Peak specialising in endometriosis has retired from the NHS and the waiting list for this kind of specialist is more than two years.”
While Maddy waited and waited, she was forced to give up her job as a greeting card designer and move in with family. As endometriosis is not classed as a disability, she was not eligible for any financial support. “It’s almost like I fell through the cracks of society,” she said.
Maddy eventually decided on a hysterectomy knowing it would limit her options for parenthood.
She said: “I always said if nothing else worked then that’s what I would do. I had nothing else to live for, the pain had taken everything. My problem was mainly my womb. For lots of women the problems are all over, and they don’t have that option.
“There were doctors who tried to talk me out of it, telling me to get pregnant instead, but it’s the best decision I’ve ever made. I don’t know if I’ll ever want children, I couldn’t place that above other serious needs.
“I had to fight for hormone replacement therapy too, but my health has improved dramatically. I’m working full-time, just bought a house, and I go running – things I could never have imagined before.”
Maddy has also begun using her Instagram page @letschangeitperiod to connect with campaigners across the UK and recently met with High Peak MP Robert Largan to ask for help.
He said: “This issue is very close to my heart. As a member of the All Party Parliamentary Group for Endometriosis, I’m proud to campaign for greater awareness and funding.
“Locally, we need to do much better on a condition which has a huge effect on so many women. It was great to meet Maddy and I’m keen to work with her. I’ll be raising the issue again with both the public health minister and our local NHS clinicians.”
A spokesperson for NHS body Joined Up Care Derbyshire said: “We recognise women with endometriosis face many challenges in the management and treatment of their condition, and the severe impact it can have.
“Care pathways are complex and vary significantly with a patient’s age and symptoms. NHS Derby and Derbyshire works with other agencies to make these services as accessible as possible.
“Gynaecology outpatient referrals have continued throughout the pandemic and most clinics are now going ahead as normal. Covid has created real challenges around access for many kinds of surgery, including for endometriosis.
“We welcome feedback on ways services can be improved, and encourage women to see their GP if they have symptoms.”