Guest post by Rosy Murch

I was first diagnosed with adenomyosis in 2018, following around 8-10 years of misdiagnoses, dismissal and gaslighting from medical professionals. I was diagnosed via a transvaginal ultrasound, followed by an MRI to confirm, and was told by the gynaecologist: “ah, adenomyosis, that’s unexpected – it only usually affects middle-aged women who have already had children.” As a childless 24 year-old, who had never even heard the word adenomyosis before, nor had any clue how to pronounce or spell it, I was in No Man’s Land.

Like so many of us (whether we admit to this or not), I went straight to Doctor Google for answers, as I certainly wasn’t getting any in the hospital. What I found there was lacking, to say the least. Despite the fact that adenomyosis supposedly affects 1 in 10 women, there isn’t even an NHS page dedicated to the condition. In fact, there has been so little research into the condition that the statistics on its prevalence range from the oft-cited ‘1 in 10’ to the least-statistical-sounding-statistic of ‘between 5% and 70%’.

Adenomyosis, in a nutshell, is a uterine condition in which endometrial cells from the inner lining of the uterus (the endometrium) migrate from that lining into the muscle wall of the uterus (the myometrium). As the cells respond to monthly hormonal changes, blood can get trapped in the myometrium producing a hard and enlarged uterus. It is often referred to as the ‘evil sister’ of endometriosis.

The symptoms are many and varied, including – but by no means limited to – severe period and ovulation pain, heavy periods, lower abdominal pressure, a bloated lower abdomen, fatigue and nausea. The condition also can impact the function of the bowel and bladder, which can present their own fun little obstacle when seeking diagnosis.

In my case, I have lost count of the times I was diagnosed with ‘IBS’. Other fun stop-offs on the misdiagnosis roulette included endless STI tests (all negative) and actual diagnoses of frequent UTIs, kidney infections, pelvic inflammatory disease, ‘a low pain threshold’, food intolerance and – my personal favourite – thrush, for which I was prescribed 24 tubes of Canesten. I did not have thrush, but if you do, hit me up! I’ve got a lifetime supply of medication to sort you out.

Whilst I can laugh at this now, I’m genuinely horrified that it took so long to be diagnosed with something that affects x (???) number of women, and something that was increasingly having a huge detrimental impact on my physical and mental wellbeing. I’m also extremely frustrated by the fact I had never heard of it before, which I believe is purely down to the fact there is so little general awareness of the condition. My own GP asked me what it was once I returned from the gynaecologist with my diagnosis.

When Googling adenomyosis, one of the first hits you will be faced with is the NHS page for a hysterectomy, as this is currently the only cure for the condition. Whilst it’s true that a hysterectomy provides a cure (this isn’t the case for endometriosis – but that’s a tale for another day), it is terrifying for those newly diagnosed to search their condition and immediately be presented with the word ‘hysterectomy’ rather than any explanation of the condition itself. On other search hits, adenomyosis ordinarily appears as a sub-topic under the heading of endometriosis. Whilst the conditions are similar, they are also fundamentally different, and the distinction between the two is crucial for understanding treatment and management options.

It is for this very reason that I decided to set up my Instagram account – @acknowledgingadenomyosis – to try to raise awareness of the condition, but also allow it space to breathe on a platform in its own right. In doing so, I have met some wonderful people from around the world, and have actually now helped more than 50 people receive a diagnosis of adenomyosis – a condition which they themselves hadn’t previously heard of either. Whilst I’m honestly delighted and humbled by the fact I’ve been able to help, I can’t help but feel heartbroken that it took me, a 27 year-old non-medic from London, to do so. It shouldn’t be up to us to tell our doctors which conditions to look for; we should be listened to, believed and thoroughly investigated for all possible options. Sadly, in the case of adenomyosis, I just don’t think we’re there yet.

You can find Rosy on Instagram @acknowledgingadenomyosis