The BBC presenter Naga Munchetty has revealed the excruciating pain caused by a little-known womb condition in the hope of raising awareness of adenomyosis, which is thought to affect up to one in 10 women.
Munchetty said a flare-up at the weekend was so painful that her husband called an ambulance after she screamed for 45 minutes, yet she had struggled to obtain a diagnosis and treatment after decades of painful, heavy 10-day periods that sometimes made her pass out.
She told her Radio 5 Live listeners: “Right now as I sit here talking to you: I am in pain. Constant, nagging pain. In my uterus. Around my pelvis. Sometimes it runs down my thighs. And I’ll have some level of pain for the entire show and for the rest of the day until I go to sleep.”
Adenomyosis is a condition in which the womb lining grows deep within the muscular wall of the womb. Similar to endometriosis, in which similar tissue to the lining of the womb grows outside the womb, it can cause severe symptoms, including extremely heavy and painful periods, bleeding, pain during and after sex or when going to the toilet.
Adenomyosis is commonly diagnosed in women over 40, though it also affects younger women, and often it is only discovered at routine screenings, meaning many women have it without knowing. It is more common among women who have given birth more times, especially if they had a caesarian section.
Possible treatment options include hormonal contraceptives, painkillers and anti-inflammatories. But in some cases surgery to remove the womb, a hysterectomy – which Munchetty said she is resisting to avoid early menopause – is the only solution, though this is not suitable for younger women who are hoping to conceive naturally.
Munchetty said she had been told by doctors that she was “just unlucky”, and had to adapt her life to accommodate the pain and heavy bleeding, including setting alarms throughout the night to replace her tampon. She added that there is still no dedicated NHS page for adenomyosis.
Jo Hanley, an adviser at Endometriosis UK, said the lack of specific guidelines for the diagnosis and management of adenomyosis made it difficult for clinicians to identify and treat it. “The lack of awareness, guidelines and research available for healthcare practitioners will filter down to the general public,” Hanley added.
One guest on the show, Jen Moore, said the pain “feels like I have a bowling ball sat inside my pelvis pushing out on the bones from the inside out trying to break them”. She said she had to medicate every day and was regularly bedbound.
Another guest, Amy, said she could not play with her 11-year-old daughter because of the pain. “It breaks my heart,” she said in tears.
Ying Cheong, a professor of reproductive medicine at the University of Southampton, said adenomyosis and endometriosis were considered to be the same family of disease as they both involve endometrial glandular tissue somehow located outside the womb. But adenomyosis is more ill-defined and can only be diagnosed through ultrasound or MRI scans.
About 40% of women with adenomyosis also have endometriosis, said Dr Alison Maclean, a women’s health researcher at the University of Liverpool. She added that although there had been recent advances in ultrasound and MRI diagnoses, “they are not 100% accurate, and the diagnostic criteria are still being debated”.
Dharani Hapangama, a professor of gynaecology at Liverpool, said some clinical trials were looking into “desperately needed” new treatments, but that first basic science was needed to better understand the condition that is thought to affect 10% of women, as “we know very little about it”. “The main issue is the lack of funding for research,” she added.
Prof Andrew Horne, professor of gynaecology at the University of Edinburgh and spokesperson for the Royal College of Obstetricians and Gynaecologists, said a third of people with adenomyosis do not experience any symptoms, but for those who do it can “severely impact” their quality of life and may affect fertility.
A recent RCOG report based on interviews with over 800 women with gynaecological conditions showed that 80% said that their mental health had worsened due to long waits for treatment with painful symptoms.
Department of Health and Social Care spokesperson said the first ever government-led women’s health strategy for England, published last summer, would “boost the health and wellbeing of women and girls across the country, while improving how the health and care system listens to all women”.
She added: “It commits to transforming women’s health content on the NHS website and adding additional pages for conditions such as adenomyosis, making it easier to find relevant information.”
An NHS spokesperson said: “We strongly encourage any woman concerned about their health to speak to their GP.
“GPs should keep up to date with the latest Nice guidance on this condition so a speedy diagnosis and appropriate treatments can be carried out.”
• This article was amended on 23 May 2023 to more accurately describe the condition endometriosis.
