Living with Endometriosis: Charlotte’s Story
Since the age of 14, Charlotte McCann has endured debilitating pain caused by endometriosis. As she grew older, the condition worsened to the point where she was forced to give up the career she had trained for. Nights often ended with her being violently sick, and there were days she was physically unable to get up.
Contrary to popular belief, endometriosis isn’t just a severe period problem. It’s actually a body-wide inflammatory illness in which tissue resembling the womb lining grows elsewhere — sometimes on the bowel or even the lungs — forming painful, inflamed lesions as it spreads. Diagnosis can take years, and because there’s no known cure, sufferers are often left to cope with agonising symptoms that seep into every part of life, from relationships and careers to education and emotional wellbeing.
Charlotte, now 27, is hopeful that a newly trialled pain management scheme, backed by £2.3 million in funding, could bring relief to others facing what she has been through.
A Career Cut Short by Chronic Pain
Living in Huntly, Aberdeenshire, Charlotte has been diagnosed with stage 4 endometriosis. The condition forced her out of her corporate finance job, and she now earns a living pet-sitting on a freelance basis, working when her body allows it.
“I would wake up in the night vomiting and I was always worried that maybe my appendix had burst or I had a kidney infection or something like that,” she said. “The pain would come on so strong, I wouldn’t be able to even sit up straight, I wouldn’t be able to stand up. It was heavily disrupting my life. I couldn’t focus on anything, and I couldn’t sleep or eat because of the pain. There’s no way I could continue my nine-to-five job when I could barely sit up.”
Years of Uncertainty Before Diagnosis
For a long time, Charlotte had no explanation for what she was experiencing — it wasn’t until she underwent an MRI scan that endometriosis was finally confirmed. By that point, the disease had already reached her bladder and begun affecting other areas of her body too.
Life with Stage 4 Endometriosis
According to Charlotte, powerful opioid medication is now needed just to manage the pain — but it comes at a cost. “I am now on very strong opioid painkillers to try to get on top of the pain, but they make me feel very sick, to the point I can’t eat, so I have lost a lot of weight now as well,” she explained.
Some days the pain is so severe she is confined to bed, and she relies on mobility aids because of back pain linked to her condition. Although she underwent surgery to remove the problematic tissue, her symptoms eventually came back.
Despite everything, she’s hopeful about the newly announced trial. “Endometriosis has had a huge impact on my life, and I am delighted to hear that they are looking at new ways to help the millions of women who are suffering with this every single day.”
What Does the Trial Involve?
Groundwork for the study — set to run over five years and funded by the National Institute for Health and Care Research (NIHR) — is already underway. Once enrolled, participants will follow a 12-week tailored course known as the endometriosis-specific pain management programme (e-PMP).
Researchers want to find out whether this approach delivers better results for women whose pain hasn’t responded well to surgery or drug treatment. The programme brings together CBT-based psychological support, specialised physiotherapy input, advice covering relationships and intimacy, and medication aimed at easing side effects.
A Personalised Approach to Pain Management
Women who haven’t yet reached menopause will be split into two groups: one receiving the new programme in addition to their usual care, and the other continuing with standard treatment only, so outcomes can be compared between the two. Specialists will be responsible for referring suitable candidates into the study.
The research is being led by Dr Lucky Saraswat, a consultant gynaecologist who also holds an honorary senior lectureship at the University of Aberdeen and heads the Aberdeen Endometriosis Centre within NHS Grampian.
Expert Views: “Endometriosis Is Under Researched”
Dr Saraswat highlighted how little attention the condition has historically received relative to how common it is. “Endometriosis is one of the most common yet under researched causes of chronic pain,” she said. “Many women continue to suffer even after surgery or medication. This study will help us understand whether a tailored, interdisciplinary pain management programme can offer meaningful, long term improvements in quality of life.
“If effective, e-PMP could become a vital new treatment option, particularly for women who wish to avoid repeated surgery or hormonal therapies, or who are planning a pregnancy.”
Aiming to “Revolutionise Care”
Beyond measuring clinical outcomes, the trial will also examine whether the approach represents good value for money. Prof Anthony Gordon, who directs NIHR’s health technology assessment programme, noted that many women endure years of severe symptoms with limited long-term treatment choices.
“High-quality research is essential to break this cycle and deliver treatment that addresses the full, complex impact of endometriosis,” he said. “By evaluating tailored, non-surgical pain management, this trial could revolutionise care — providing desperately needed support, improving daily lives, and offering long-term relief when standard treatments haven’t worked.”
Charity and Research Community React
Emma Cox, who leads Endometriosis UK as chief executive, stressed the wider importance of the research. “Symptoms of endometriosis including chronic pelvic pain can have a significant impact on someone’s physical and mental health, and research is vital to helping improve management and treatment options.
“We welcome this much-needed research and look forward to working with the team to see how an endometriosis specific pain management programme could support those with the disease in the future.”
As reported on the BBC