Adenomyosis – The Lesser Known Cousin to Endometriosis

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You’ve probably heard about Endometriosis – it’s been getting a lot of attention recently, with celebrities from Lena Dunham getting a hysterectomy to Emma from the Wiggles pulling out of shows in order to receive treatment for the disease.  It’s a disease that was recently allocated $2.5 million in funding for research. It is without a doubt a disease that deserves attention and funding – however there is another, incredibly similar disease which is being left behind, and April is the month dedicated to its awareness. 

As explained by jeanhailes.org, adenomyosis is a condition where ‘the cells that normally form a lining on the outside of the uterus, also grow in the muscle wall of the uterus’. The disease causes its sufferers to experience abnormally heavy periods which can lead to anaemia, severe abdominal pain, dizziness, fatigue and the list goes on and on. These symptoms are not too dissimilar to endometriosis – however adenomyosis receives no funding and no attention. I’m in no way saying that endometriosis doesn’t deserve the attention it receives, but it would definitely be nice to share the love a little.

Source: Adenomyosis Advice Association Facebook page

I feel pretty passionately about this, because since I was 14, I have suffered from this disease, and I missed out on countless days of school, work, uni and social arrangements because of it. I had my period for two years before the symptoms of adenomyosis began, which for me meant a lot of time spent in agonising pain, vomiting, sleeping and even occasionally passing out. I visited doctors and gynaecologists numerous times, only to be told that what I was experiencing was normal, and that I would ‘grow out of it’. When I was 18, four years after I first began experiencing symptoms, I finally was diagnosed with adenomyosis – only to be told that the only cure for this awful disease, was to have a full hysterectomy, something that wasn’t a choice I was willing to consider, as well as a surgery that most doctors are unwilling to perform on someone as young as I am. 

Source: Adenomyosis Advice Association Facebook page

From the time I received the diagnosis, I continued to experience the same symptoms, with the medication I was prescribed doing very little to ease the pain. In 2017, seven years after I first experienced symptoms of adenomyosis, I was finally put onto a pill which has stopped my period altogether. However, my gynaecologist has warned me that it is only a temporary fix – the pill will eventually stop working, and I will be back to square one.  On top of this, the pill is not covered by the PBS and costs nearly $80 every three months. Further, whilst I may not be getting my period at the moment, I do still experience phantom pains from time to time, as well as experiencing side effects from the pill I take. 

In school, I often felt a lot of anxiety around my period. The stigma around periods meant I didn’t feel comfortable telling teachers and friends why I was missing school, and I often would get quite stressed about missing school, particularly in VCE. Whilst I am a part of support groups on facebook for women who suffer from adenomyosis, to this day I haven’t met anyone in person who also suffers from the disease. 

Source: Adenomyosis Advice Association Facebook page

Finding out at the age of 18 that you have a disease with no cure is really scary, particularly when it causes as much disruption and pain as adenomyosis. As I mentioned earlier, April is adenomyosis awareness month, and I highly recommend reading some of the stories of women who are affected by the disease.

I wouldn’t wish adenomyosis on my worst enemy, and it’s really time we give this disease the same level of funding and attention as endometriosis. 

Source: Adenomyosis Advice Association Facebook page

Side note: Through writing this piece, I learnt that endometriosis is a recognised word by spellcheck – and adenomyosis isn’t.

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