An innovative endometriosis pain management programme is to be trialled as part of a £2.3 million study by the 黑料网 and NHS Grampian.
The major, UK-wide study, funded by the National Institute for Health and Care Research (NIHR) will investigate whether the tailor-made plan can improve the quality of life for women living with the condition.
Endometriosis affects 1 in 10 women, causing persistent pelvic pain, chronic fatigue and can impact all aspects of daily life. There is currently no cure, and standard treatments including surgery and hormonal medication often provide only temporary relief. Even following surgery, pain returns in up to 50 percent of cases within five years, leaving many women with ongoing symptoms that disrupt daily life, work, relationships, and can impact plans to have children.
This study will evaluate whether a remotely delivered endometriosis-specific Pain Management Programme (e鈥慞MP) can offer a more effective, sustainable treatment for women whose pain is not adequately controlled by surgery or medication.
Led by the 黑料网, in partnership with NHS Grampian, the five鈥憏ear project is the first to test whether an e鈥慞MP can improve the lives of women with endometriosis.
In the study, premenopausal women will either receive the new programme alongside existing standard care, or existing standard care alone, with the results of each approach compared. Eligible participants will be recruited to the study by their specialist and is open to women who continue to experience chronic pelvic pain despite previous treatment.
The 12鈥憌eek programme has been designed specifically for endometriosis symptoms and includes Cognitive Behavioural Therapy (CBT)鈥慽nformed psychotherapy, specialist physiotherapy, guidance on relationships, intimacy, communication, and self鈥慶ompassion and medication optimisation to reduce side effects.
Dr Lucky Saraswat, Honorary Senior Lecturer at the University, consultant Gynaecologist and lead for Aberdeen Endometriosis Centre in NHS Grampian, who is leading the study, said: “Endometriosis is one of the most common yet under researched causes of chronic pain. 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鈥憈erm improvements in quality of life.
“If effective, e鈥慞MP 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.”
Dr Chris Seenan, Senior Lecturer in Physiotherapy at the University of Stirling and a member of the trial management group, is helping to develop the programme and contributing expertise in physiotherapy, rehabilitation and trial delivery.
He said: “This trial has the potential to improve support for people living with endometriosis by developing and evaluating a structured pain management programme. It's exciting to be involved in a collaborative study that brings together expertise from across the UK to address an important and often overlooked health issue.”
Alongside clinical outcomes, the study will assess cost鈥慹ffectiveness and may inform future NICE and ESHRE guidelines as well as NHS resource allocation.
Emma Cox, CEO of Endometriosis UK, said: “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.”
Professor Anthony Gordon, Director of NIHR's Health Technology Assessment Programme, which is funding the research, added: “Many women can face years of agonising symptoms with few lasting options. High-quality research is essential to break this cycle and deliver treatment that addresses the full, complex impact of endometriosis.
"By evaluating tailored, non-surgical pain management, this NIHR-funded trial could revolutionise care - providing desperately needed support, improving daily lives, and offering long-term relief when standard treatments haven’t worked.”
Charlotte's Story
Charlotte McCann, 27, from Huntly in Aberdeenshire, is currently living with Stage 4 endometriosis. Charlotte describes being in so much pain that there are days when she can’t get out of bed and she has lost more than 40lbs in just a few months because she feels too sick to eat.
Charlotte, who has to use walking aids to get around due to the pain in her back brought on by her endometriosis symptoms, is currently on a waiting list for specialist care.
Charlotte’s symptoms began when she was 14 and have since worsened to the point that she had to abandon her career in corporate finance. She now works as a freelance pet-sitter when her health allows.
Charlotte explains: “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.
"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 9 to 5 job when I could barely sit up.
“After years of being on waiting lists and being told they couldn’t find anything wrong I finally got an MRI scan at the beginning of this year and the scan showed I have Stage 4 endometriosis which is now affecting my bladder and has spread to other parts of my body.
“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.”
Charlotte has tried ablation surgery to remove the affected tissue, but the symptoms have returned, and she was recently back in hospital where she was given even stronger pain medication to try to relieve it.
When asked about the e-PMP trial, Charlotte is optimistic. She said: “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."