Anna and Charlotte share their experiences of the pain of living with endometriosis, a condition that affects 1 in 10 women and those assigned female at birth in the UK and can take years to diagnose.
By Zahra Errami, ITV News
"I’m sick, I sweat, doubled over in pain, crying – it affects all parts of my body"
"I’ve had 14 surgeries now, I've got a stoma bag, a long-term catheter"
This is the reality of living with endometriosis, according to Anna and Charlotte.
Suffering intense stomach pain, vomiting, and spending hours on the toilet in agonising pain has become normal as they live with endometriosis.
Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the bowel, ovaries and fallopian tubes.
With regular periods, the lining of the womb sheds monthly building up to menstrual bleeding, but the tissue from endometriosis has nowhere to go – the scar-like tissue can fuse organs together, causing inflammation and pain to those who have it.
"At 16, I was referred to a gynaecologist, who told me there was nothing wrong with me - that I was just being dramatic", Anna, 28, from Wrexham, told ITV News' Here's The Story.
Anna was misdiagnosed, only finding out she had endometriosis after she had to have surgery to remove her appendix. She was told to see a gynaecologist, who refused to agree with the surgeons' findings.
On average it can take up to seven to eight years to be diagnosed with endometriosis from when you start displaying symptoms, according to a 2020 report by the All Party Parliamentary Group on Endometriosis.
Why is it so difficult to diagnose?
The NHS says symptoms can vary, and many other conditions can cause similar symptoms.
A standard ultrasound imaging test won't definitively tell your doctor whether you have endometriosis.
Specialists say the only definitive way to diagnose endometriosis is by a laparoscopy which involves the insertion of a camera into the pelvis via a small cut near the navel.
The surgeon uses the camera to see the pelvic organs and look for any signs of the condition.
Charlotte, from Neath in south Wales, said that living with the condition and the constant dismissal by doctors had negatively affected her mental health.
"A doctor sat me down next to me and had said ‘you just need to lose weight’ - and I remember thinking, I am 17 – imagine the impact that is going to have on my mental health", Charlotte told ITV News.
"I’ve got so much trauma from going through all of that when I was younger, it has a massive effect on me now when I go into hospitals, I’m constantly thinking of that time."
Both women rely on the online endometriosis community for support, as they were offered no help in dealing with the emotional impact of living with the condition.
After her experience with receiving conflicting medical advice, Anna launched her own platform The Menstrual Health project to help better support the endometriosis community online.
"We need funding in women's health in general. When the pandemic hit – gynae was the first to stop surgery and the last to go back."
Less than 3% of medical research funding in the UK is focused on women-specific diseases like endometriosis, according to the Royal College of Obstetricians and Gynecologists.
They also found that the wait for gynaecology services across the UK is longer than it’s ever been, with waiting lists increasing by more than 60% compared to pre-pandemic levels.
A Department of Health and Social Care spokesperson said:
“We are working with the NHS to tackle the Covid backlog and ensure everyone receives the care they need and, as of February 2022, the average waiting time for gynaecological treatment has fallen by over 20% since the peak in July 2020.
With the average a wait for surgery for endometriosis being 6-7 years, Anna says that while the pandemic has made this worse, the lack of surgeons was a problem way before Covid.
“In the 10 years since I've been diagnosed, nothing sadly has changed”, she said.
In Wales where Anna and Charlotte live, Health Minister Eluned Morgan admits waiting times for endometriosis treatment in the country are “unacceptable”.
Speaking to a ITV Wales programme about the condition, 'Living in Pain', she said: “I’m determined as the first woman health minister [in Wales] for a very long time to make sure more focus is put into women’s health issues, and endometriosis is one of those.”
In Wales, the Women’s Health Implementation Group (WHIG), 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.
The UK Health Secretary Sajid Javid and Maria Caulfield, the Minister for Women’s Health, say more needs to be done to improve the treatment of endometriosis.
"We must ensure all women feel confident in going to their GP when they experience symptoms of endometriosis and, when they do, that they are listened to," they recently wrote in a joint article for the Telegraph.
For more information and advice about endometriosis, you can visit:
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