Doctors dismissed my endometriosis as anxiety.

Amy Peckham-Driver was just 14 when excruciating period pains caused her to pass out in a school toilet. Despite asking doctors if it could be endometriosis, she was told she was too young and was prescribed the contraceptive pill to manage the pain. Over the next decade, she endured debilitating symptoms before finally receiving a diagnosis for the incurable condition, which affects an estimated 1.5 million women in the UK. A recent report by Endometriosis UK reveals the average waiting time for a diagnosis has stretched to a staggering nine years and four months. The study found that 39% of respondents had to visit their GP 10 or more times before endometriosis was even suspected, and a further 46% of those who attended hospital were sent home without any treatment.

"My pelvis looked like a bomb had gone off."

Amy, now 31, from Needham Market, Suffolk, recounted how she was repeatedly told her pain was likely due to irritable bowel syndrome (IBS) or anxiety, a experience she describes as "medical gaslighting." "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," she shared. At the age of 27, she was finally diagnosed with deep infiltrating endometriosis, a condition where cells similar to the womb lining grow outside the uterus, affecting all her pelvic organs. This condition, impacting approximately one in 10 women in the UK, can manifest with severe pelvic pain, heavy bleeding, fertility issues, chronic fatigue, low mood, and pain during sexual intercourse or when using the toilet.

Amy has undergone several surgeries, including one performed privately, where a surgeon described her pelvis as having "looked like a bomb had gone off" inside. Despite these interventions, the endometriosis continues to grow. Years ago, Amy froze her eggs, anticipating the need for IVF. However, when she and her partner applied for IVF treatment several months ago, they were rejected due to her low egg supply, a direct consequence of her previous surgeries. "That feels like the ultimate slap in the face because the NHS inadvertently caused my infertility," she stated, adding, "I never would have ended up in that position if I’d been diagnosed 10 years ago." Currently, Amy is at risk of bowel obstruction and potential kidney failure, considered an urgent case, yet she remains on a surgery waiting list, feeling "left to rot." She passionately advocates for better GP training to recognise symptoms earlier and for increased research into the condition, emphasizing that 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 endometriosis symptoms at 13 but wasn’t diagnosed until a decade later. Suffering from "unbearable pain" for up to 18 days a month, she frequently returned to her GP. "When I was 18, they said to me ‘You could try getting pregnant to see if it helps’, which was incredibly disheartening," she recalled. Ami tried six different contraceptive pills without any relief from the pain. "My mental health was terrible. I got an office job but I couldn’t focus because I was in so much pain, and I had to leave after 10 months." In 2016, she had the Mirena coil fitted, which reduced bleeding but not the pain. In 2021, Ami underwent her first laparoscopy, a surgical procedure using a small camera to diagnose and remove some scar tissue. This provided pain relief for a few months before it 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," she said. Ami is determined to change the perception of endometriosis, urging people to understand it as a "full-body inflammatory disease" rather than merely "painful periods."

"My children are watching me deteriorate."

Eleven years ago, Faye Ramsey, 31, from Ipswich, collapsed with severe stomach pain at a wedding. Doctors dismissed it as IBS or stress, insisting it couldn’t be endometriosis because it often causes infertility, and she already had two children. She was prescribed various contraceptives that failed to alleviate her pain. Last March, Faye had a laparoscopy. Before the procedure, her surgeon remarked, "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 didn’t challenge him, feeling her life was in his hands. Afterwards, the surgeon admitted he had found endometriosis but downplayed it as "only a small patch" that had been removed, assuring her she would be "absolutely fine." However, later scans revealed residual endometriosis with adhesions on her bowels. "My children are watching me deteriorate. I’ve not really got that much energy any more," she lamented. "It’s horrible to feel like you’re not doing good enough for your children." Faye advocates for endometriosis education in schools for both boys and girls and urges doctors to offer more than just contraceptives. She is also collecting women’s health stories to present to the government, vowing to continue her efforts until she can speak with the health secretary to push for necessary help and changes.

"It took 27 years for me to be diagnosed."

Mairead Morgan, originally from Omagh, County Tyrone, but now living in Manningtree, Essex, began experiencing symptoms at age 11 but wasn’t diagnosed until she was 38. Now 41, her career moves across the UK meant she felt she was "back to square one" with doctors each time. After suffering a ruptured cyst, she underwent a laparoscopy to remove some endometriosis, which provided temporary relief, but she still endures severe pain during flare-ups. Mairead, an architectural technologist, finds that yoga and cold water swimming offer some relief, though she still experiences days of being bedbound. Her symptoms have been exacerbated by perimenopause. "It has definitely affected my career but as a very ambitious and driven Irish woman, I’ve powered through," she stated. "You can be fine one minute and in debilitating pain, almost needing hospital intervention, within a few days." Mairead has found knitting helpful during flare-ups to distract herself from the pain.

Emma Cox, chief executive of Endometriosis UK, expressed that endometriosis care has been "neglected for too long," with women enduring years of 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," she stated. "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 the experiences of many women with endometriosis "aren’t good enough," with many "waiting for too long before they get adequate diagnosis and treatment." The NHS is reportedly supporting local areas in rolling out better and more accessible 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."