A £2.3 million study in Scotland will trial a potentially "vital" new treatment for endometriosis pain, offering hope to a woman who says the condition has left her unable to get out of bed.
The University of Aberdeen and NHS Grampian will investigate whether a remotely delivered endometriosis-specific Pain Management Programme (e-PMP) can help women whose pain cannot be controlled by surgery or medication. It is the first project to test whether an e-PMP can improve the lives of women with the condition, which affects one in 10 women and causes persistent pelvic pain, chronic fatigue, and can impact all aspects of daily life.
Woman's story of severe symptoms
Charlotte McCann, 27, from Huntly in Aberdeenshire, is living with stage four endometriosis. She said the pain is so bad some days she cannot get out of bed and has lost more than 40lbs in just a few months because she feels too sick to eat. She is currently on a waiting list for specialist care and said her symptoms started aged 14, worsening to the point she felt she had to leave her career in corporate finance.
McCann described waking up in the night vomiting and worrying her appendix had burst or she had a kidney infection. "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," she said. "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 9 to 5 job when I could barely sit up."
Diagnosis and current treatment
After years on waiting lists and being told nothing was wrong, an MRI scan at the beginning of the year showed she has stage four endometriosis, which is now affecting her bladder and has spread to other parts of her body. She is now on very strong opioid painkillers, but they make her feel sick to the point she cannot eat, leading to significant weight loss.
There is currently no cure for endometriosis, and standard treatments including surgery and hormonal medication often provide only temporary relief. For those who receive surgery, pain returns in up to half of all women.
Study details and hopes
Dr Lucky Saraswat, lead at the Aberdeen Endometriosis Centre in NHS Grampian and leader of the study, said endometriosis is one of the most common under-researched causes of chronic pain. "Many women continue to suffer even after surgery or medication," she said. "This study will help us understand whether a tailored, interdisciplinary pain management programme can offer meaningful, long-term improvements in quality of life."
During the study, funded by the National Institute for Health and Care Research (NIHR), premenopausal women will either receive the new programme alongside existing standard care, or existing standard care alone, with the results compared. The 12-week programme includes Cognitive Behavioural Therapy (CBT)-informed psychotherapy, specialist physiotherapy, guidance on relationships, intimacy, communication, and "self-compassion and medication optimisation to reduce side effects".
McCann said she was "delighted" to hear about a study that could help millions of women. Emma Cox, CEO of Endometriosis UK, said: "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."
