NHS Choices: Give us the Info on Adeno

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NHS Choices: Give us the Info on Adeno

Adenomyosis is a common, debilitating condition affecting women, yet it is one of which very few people - including women - have heard. This is due in part to the difficulty in diagnosis, but there is also so little information available that many women suffer through it without a diagnosis, or even realising why they suffer. Even NHS Choices, the information website run for the NHS, has not created a page on this condition that affects at least 1 in 10 women - but possibly more.[1][2]

We want this to change.

What is adenomyosis? Often summarised as endometriosis within the womb, it occurs when cells from the lining of the womb (endometrium) break through the muscle wall of the uterus (the myometrium). Common side effects are heavy menstrual bleeding and severe dysmenorrhea (period pain), but there are more serious side effects, too: sharp abdominal pains; lower back, leg pain and other forms of chronic pelvic pain; dyspareunia (painful sex); numerous bowel issues; severe nausea; fatigue and often infertility. The only 'cure' is hysterectomy. 

Despite its commonality, finding information on this condition is difficult and complicated; many women who suffer with pain struggle to find answers in how to manage their pain or options for treatment from GPs. They seek sound, research-based medical advice from trusted sites.

One trusted site in particular is NHS Choices, which provides an A-Z guide for a number of other conditions and illnesses, some rare and others very common - except there is no page on adenomyosis. The lack of information on this condition (simply as an afterthought on pages about periods and hysterectomies), means that many women must do their own online research, which could result in misinformation or pseudo-science. Many rely entirely on online communities for anecdotal advice.

However, NHS Choices have declined several requests to create a page on the subject, choosing to prioritise updating content of other conditions already on the site.

It is important for women who suffer from adenomyosis to have better access to information, advice and treatment so that they can live through this condition with dignity.

We are therefore asking NHS Choices to reconsider their position and create a page on adenomyosis that provides the same amount of information as other conditions, including: overview, symptoms, diagnosis, and treatment/coping with adenomyosis. We believe this could easily be done without creating new content, instead linking where necessary to support groups and research institutions.

This is an easy compromise; but without a trusted page that women can refer to, it is our own well-being compromised.

We call on the decision-makers at NHS Choices to hear our demand and give us better info on adeno! Please be a voice with us and sign our petition.

[1] https://www.guysandstthomas.nhs.uk/resources/patient-information/gynaecology/adenomyosis.pdf
[2] https://academic.oup.com/humrep/article/27/12/3432/652839



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