A few months ago I received a message from Sarah, also known as MyPelvicPain on Instagram. Sarah had found my blog and we briefly discussed the commonalities of our experiences with pelvic pain, and when I followed her back I began to see just how many there were. If you follow Sarah, you’ll know she repeats one message more than others in her advocacy work – ‘endometriosis is not the endometrium’.
Endometriosis is a condition that mystifies many doctors, let alone patients and their friends and family, and one of the most common misunderstandings is that it is the endometrium – the lining of the womb. In reality, endometriosis is a tissue a bit like the endometrium, except it is found outside of the womb – such as on the bladder, bowel, appendix, even in the chest cavity – and it behaves differently. These patches of endometriosis are known as lesions. It’s different still from adenomyosis, which is when the literal endometrium grows in the muscle wall of the womb. To complicate things further, ‘endometriomas’ are different again – also known as chocolate cysts, they are ovarian cysts filled with old blood. It is all so complicated and making the facts simple and communicable is a super important task. Yet for a few months, I kept wondering why the message ‘endometriosis is not the endometrium’ was appearing so often on my feed. Why did this message, which I knew to be accurate but understood why it was regularly misunderstood, need such constant reinforcement?
In the end, of course, it was my own health that led me to finally clock the importance of knowing this vital distinction. By finally accepting it into the core of my understanding of the condition, it opened up a whole new appreciation for why traditional ‘treatments’ keep failing me (and so many others). The prescription I received three years ago for Mefanamic Acid to lighten menstrual bleeding didn’t work as the problem wasn’t menstrual bleeding, because endometriosis is not the endometrium. My surgeon, an expert in endometrial ablation, burning off the small lesions of endometriosis he could see didn’t work because endometriosis is not the endometrium, it doesn’t respond in the same way as the endometrium. Fitting a Mirena coil hasn’t greatly improved my pain because thinning the endometrium isn’t much help when endometriosis is not the endometrium. Some months after I got the Mirena coil and stopped having menstrual bleeds, I started bleeding from somewhere new – my rectum. I thought it couldn’t be endometriosis because the coil had thinned my endometrium so much that I wasn’t menstruating anymore, surely the same applied to the lesions of endometriosis? No, my GP indicated, because endometriosis is not the endometrium.
Your entire perspective shifts once you fundamentally understand that endometriosis is not the endometrium, we are dealing with something far more sinister. And much like the condition itself, our knowledge of it is only just beginning to scrape the surface.
Every day I learn something new about the condition, and my body, thanks to so many patients and doctors sharing their stories and research online. It’s these conversations that make such a difference to the patient experience. For that I am eternally grateful to Sarah and other advocates like her for educating and enlightening me every single day!
Thanks to this great glossary of Endometriosis terminology for helping me make sure this blog is as accurate as possible. Some other great accounts to follow include endogirlsblog, endo_black, endosocialworker and endoqueer.
It’s been a fairly frantic August so far – personally I turned 25 and became an aunt on the same day! There has also been a lot of heartache that could do with your support. If you can, please donate to the disaster relief in Lebanon – find a comprehensive list of charities that need support here; use this resource to complain about the dehumanising coverage of refugees arriving in the UK; and sign this petition about the incredibly unfair downgrading of exam results in the UK due to an elitist and unfair systemic response to the challenges posed by the pandemic. Finally, a reminder that I am currently raising money for Endometriosis UK by taking part in the #WalkForEndo – learn more and sponsor me here.