Common condition you won’t find in the A-Z of the NHS

Sioned Williams MS on adenomyosis – a little-known but painful condition that affects one in 10 women and girls

APRIL is Adenomyosis Awareness Month, and if there’s ever a condition that needs more awareness, it’s adenomyosis.

It affects at least one in 10 women and girls, making it as common as diabetes or asthma in women... and yet you won’t find it mentioned on NHS Wales’ 111 A-Z webpages.

So, what is it? It’s a condition where the lining of the womb starts growing into the muscle in the wall of the womb. It means that sufferers often have painful and heavy periods, bloating, heaviness or fullness in the tummy, and this pain can spread to the back and legs.

Astonishingly, it is often only diagnosed when a hysterectomy is performed and the womb examined under a microscope. The symptoms often overlap with the more wellknown condition, endometriosis – so if you hear patients say that their endometriosis symptoms resolved after their womb was removed, chances are that they also had adenomyosis.

This is the experience of one Welsh patient, Donna, who said: “After my surgery, my surgeon gave me a big thumbs up, because I was quite desperate that they did find adenomyosis – we were hopeful that it was that causing most of my problems, and I was having a hysterectomy based on that theory. The validation was so important too – especially when you’ve spent 20-odd years being told there’s nothing wrong with you.”

Not everyone has heard of the condition, and the charity Fair Treatment for the Women of Wales (FTWW) has set up a petition calling on the Senedd to instruct NHS Wales to add Adenomyosis to its 111 A-Z webpages. As a patient-led charity – they know that without ‘official’ information on NHS and health board pages, many patients and healthcare professionals – are left with very little accurate information on these conditions, and misinformation is rife.

Indeed, another patient they spoke to said their GP confessed to having to Google the condition as she had never heard of it before, and expressed frustration that comprehensive, trustworthy information was hard to come by.

Dee Montague-Coast, of Fair Treatment for the Women of Wales told me that the petition means a lot to her personally.

In her words: “I had adenomyosis alongside endometriosis which unfortunately wasn’t diagnosed for 23 years. The diagnostic – and treatment – delays caused many additional issues, not just around my health, but my work, relationships, hobbies, etc. When I first heard ‘adenomyosis’, I had no idea what it was, and was (wrongly) told by a consultant that the coil I’d had fitted would cure it. I had to go away and do my own research to find out more about it, but then was stuck as the consultant hadn’t added it to my notes. Like so many, I was forced to go private to get the care I needed (I was discharged by my NHS team). By the time I had my hysterectomy, adenomyosis was so severe that my uterus had to be cut up in order to locate and remove my coil; my womb had completely absorbed it. Yet like Donna and so many other women I have heard from, I had had my pain and symptoms dismissed and normalised for so long.”

Patients, healthcare professionals, and the wider community must have access to official, accurate, accessible and bilingual information to not only raise awareness of adenomyosis, but to ensure that they are informed about the symptoms, treatments and symptom management options.

It was my privilege to be able to make a statement on this important matter in the Senedd last week.