Early Symptoms and Delayed Diagnosis
Amy Peckham-Driver was 14 when severe period pains caused her to faint in a school toilet. She suspected endometriosis but was told she was too young and prescribed contraceptive pills to manage the pain.
For over ten years, Amy endured debilitating symptoms before receiving a diagnosis of the incurable condition, which affects more than 1.5 million women in the UK. A recent report by Endometriosis UK reveals the average diagnosis wait time is now nine years and four months. The report also found that 39% of respondents visited their GP ten or more times before endometriosis was suspected, and 46% of those attending hospital were discharged without treatment.
'My pelvis looked like a bomb had gone off'
Amy, 31, from Needham Market, Suffolk, was often told her pain was due to irritable bowel syndrome (IBS) or anxiety, leading her to feel "medically gaslit".
"You know your health is disintegrating in front of you and there's absolutely nothing you can do to stop it, apart from being told to just take the contraceptive pill so you don't have periods."
At 27, Amy was diagnosed with deep infiltrating endometriosis affecting all her pelvic organs. This condition occurs when cells similar to the womb lining grow elsewhere in the body. It affects about one in ten women in the UK and can cause severe pelvic pain, heavy periods, infertility, fatigue, low mood, and pain during or after sex and when using the toilet.
She has undergone several surgeries, including a private procedure, during which a surgeon remarked her pelvis "looked like a bomb had gone off".
Despite surgeries, the endometriosis continues to grow inside Amy. She froze her eggs years ago and was advised she would require IVF. However, when she and her partner applied for IVF recently, they were rejected due to low egg supply caused by previous surgeries.
"That feels like the ultimate slap in the face because the NHS inadvertently caused my infertility,"
"I never would have ended up in that position if I'd been diagnosed 10 years ago."
Amy is now at risk of bowel obstruction and possible kidney failure, classified as an urgent case, yet remains on a surgery waiting list, feeling "left to rot".
"I want GPs better trained to recognise symptoms sooner, and more research into the condition, stressing it is 'not as simple as just having a tummy ache here and there'."
'The pain was so bad I had to leave my job'
Ami Clarke, 28, from Leighton Buzzard, Bedfordshire, began experiencing symptoms at 13 but was not diagnosed until ten years later.
She endured "unbearable pain" for up to 18 days each month and repeatedly sought help from her GP.
"When I was 18, they said to me 'You could try getting pregnant to see if it helps', which was incredibly disheartening,"
Ami tried six different contraceptive pills without relief. Her mental health suffered, and she left her office job after 10 months due to pain-related concentration difficulties.
At 23, she had a Mirena coil fitted, which reduced bleeding but not pain. In 2021, Ami underwent her first laparoscopy, a surgical procedure using a small camera to diagnose and remove some scar tissue. This provided temporary relief before pain returned.
Last May, she paid £10,000 for private robotic surgery.
"I have improved so much but I know it's temporary because the endometriosis keeps growing back, so I'm already saving for another surgery,"
Ami aims to change perceptions of endometriosis, emphasizing it as a "full-body inflammatory disease" rather than merely "painful periods".
'My children are watching me deteriorate'
Faye Ramsey, 31, from Ipswich, collapsed with severe stomach pain at a wedding 11 years ago. Doctors attributed her symptoms to IBS or stress, stating endometriosis was unlikely since she had two children.
She was prescribed various contraceptives that failed to alleviate the pain.
Last March, Faye underwent a laparoscopy. Before the procedure, her surgeon said:
"I can't wait for you to wake up and me tell you that I didn't find anything because we're not going to find endometriosis."
Faye was reduced to tears but did not challenge the surgeon, feeling her life was in his hands.
Post-surgery, the surgeon admitted finding endometriosis but claimed it was "only a small patch" removed and assured she would be "absolutely fine".
Subsequent scans revealed persistent endometriosis with adhesions on her bowels.
"My children are watching me deteriorate. I've not really got that much energy any more,"
"It's horrible to feel like you're not doing good enough for your children."
Faye advocates for education about endometriosis in schools for both boys and girls and urges doctors to do more than prescribe contraceptives.
She is collecting women's health stories to present to the government and vows to continue pressing for change until she can meet the health secretary.
'It took 27 years for me to be diagnosed'
Mairead Morgan, originally from Omagh, County Tyrone, now living in Manningtree, Essex, began experiencing symptoms at 11 but was not diagnosed until 38.
Having moved frequently for work, she felt she was "back to square one" with doctors each time.
After a ruptured cyst, she underwent laparoscopy to remove some endometriosis, which temporarily eased symptoms, but severe pain during flare-ups continues.
Mairead, an architectural technologist, finds yoga and cold water swimming helpful but still experiences bedbound days, with symptoms worsened by perimenopause.
"It has definitely affected my career but as a very ambitious and driven Irish woman, I've powered through,"
"You can be fine one minute and in debilitating pain, almost needing hospital intervention, within a few days."
Expert and NHS Perspectives
Emma Cox, chief executive of Endometriosis UK, states that care for endometriosis has been neglected, with women enduring prolonged pain and uncertainty, and that the situation is worsening.
"Our findings underscore the urgent need not only for increased awareness and understanding of endometriosis and menstrual health among healthcare providers, but for this to be translated into action,"
"Governments across the UK must treat endometriosis as a common, chronic condition that requires systematic action and we want an unequivocal commitment to reduce average diagnosis time to one year or less by 2030."
A spokesperson for the NHS acknowledged that many women's experiences with endometriosis "aren't good enough," with excessive waits for diagnosis and treatment.
The NHS is supporting local areas to implement better and more convenient services.
"Medical professionals, including GPs, should follow NICE (National Institute for Health and Care Excellence) guidelines to diagnosing endometriosis – struggling patients can also receive specialist care for menstrual problems and endometriosis through women's health hubs, which are available in most areas."
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