Throughout my infertility journey, I have encountered so many different amazing women through online support groups, this blog and my Instagram. Endometriosis is an issue that has regularly been mentioned, a condition that impacts 1 in 10 women. One woman I have met on this journey is the fantastic lady behind the Instagram account @ThisEnglishHome (whose account I highly recommend if DIY, budget friendly, boss women are your thaaang), who I am honoured to have share her story on Amber in a Teacup.
I have tried so many times to explain what endometriosis has done to me. So many times I’ve put pen to paper, only to fail & leave upset and sad that the words don’t exist. That in another way, I am alone. I will try again here, because it’s important, and because (poetically) trying again is the very definition of endometriosis; endlessly getting back up, a little less of myself each time, ready to go back into the fray. 17 years in, and I am tired.
At this stage even consultant clinicians argue amongst themselves about what endometriosis is. But the ones I most agree with (& it’s me writing this so I decide) say it’s due to retrograde menstruation (period “back-up”- not flowing “out” but seeping where ever it wants). It’s worth saying now that research and care are woefully inadequate and under researched but what seems certain, is that it’s a disease of modernity; from too many periods in a lifetime. Huh? Let me explain.
Female/femcoded bodies (transmen can still have periods) evolved from ancient apes & in an environment where they would be consistently pregnant or breastfeeding from around the age of around 13 to when we died (at 35).
Modern life is not like that huns and thank god. But, just as type 2 diabetes and heart disease are the draw backs of having a modern Western diet (I’m speaking on a population level, no judgement), modern life does not match what we evolved to do. We are simply not designed to have so many periods so often.
This evolutionary biological theory explains also why breast cancer and ovarian cancer is so rampant in western societies and so rare in indigenous ones. Cancer is cell mutation gone wrong, every time we release an egg (ovulate) we give the cell production a chance to go wrong. We just bleed too much, and girl, can I believe it.
Endometriosis is the same: the more periods we have, the more chance we give retrograde menstruation a chance to appear. And when it does, the more periods we have, the more we feed it.
These rogue endometrial cells are womb-like in their nature, and as such; they respond to the hormones your brain emits when it talks to the womb. Yes, that’s right: endometriosis cells are stupid (that’s as kind as I can be about them) – they truly believe they are still in the lining of the womb. So they chirp awake ready to work whenever your brain tells them to. You menstruate and that endo on your bladder will bloom like an evil red flower…and you will cry every time you pee that day. You ovulate, and yep, those cells on your bowel will glow like a lantern lighting the way to hell (and you won’t leave sight of the toilet that week).
Oh the sheer unending joy of it all. And the dignity. And the joy (did I say that already?)
It doesn’t sound that bad though does it? Just bad periods. Bad ovulation.
Ha. No.
Because it also somehow compromises our immune system, leads to anaemia, poor diet, weight gain, weight loss, infertility, painful femurs, insomnia & fatigue, cysts, facial hair, lack of libido and even ulcers, bad teeth and migraines.
Without a doubt the most dangeorus side effect of all this….is the depression.
Imagine someone snuck up the day before a day you’d been dreaming of and just cancelled it? And then you had to apologise to all your friends for YOUR agony. The dead coffee dates, the missed job interviews, the school plays, the ruined holiday, the missed flight. The drugs…. on your wedding day (we had to stop in the car on the way to the church).
And that’s before we talk about the medicine. Or lack thereof.
Here’s what I get to choose between:
Depression from the progesterone only pill (a widely reported and experienced side effect so don’t @ me with your essential oils) or infertility. Or I can have a combined pill. But not if you’ve ever ever had a migraine because you might die from a stroke or a blood clot. You could have the coil but that’s a tempestuous little minx too.
Or, you can have a hysterectomy at 27. Like my friend. Who had to pay for it, because middle aged white men decided she might one day want a baby (even though she could barely feed herself).
So painkillers, right? Well, NSAIDs (drugs like ibuprofen and naproxen) are the best. But I gave myself an ulcer so now I can’t have them for a while (I do, against medical advice and wonder if every stomach ache is a perforation & I’m 15 seconds away from death. Often at 4am). Paracetamol is ok & is worth taking but it won’t knock it out as any labouring mum to be will tell you. You can try gabapentin, amitriptyline & pregablin. But they all have their side effects.
And then there’s the opiates. Codeine, tramadol, oramorph, morphine, fentanyl. The big gun.
I’ve been on tramadol for 8 years and let me tell you, it’s an amazing painkiller but it’s a demon. And it comes with its own set of rules.
My days revolve around deciding which medicine is less likely to hurt me, fielding migraines and agonising femurs, a strong and loving relationship with my bathroom & apologising. So. Much. Apologising.
I won’t tell you the most embarrassing moment of my life, but it did make me consider adult nappies.
And on that note I’ll leave you, with one final note: if I ever hear you respond to the word “endometriosis” as “just bad periods”….I will find you, and YOU will bleed.
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