Adenomyosis. Hysterectomy. Endometriosis.
Three words that have had life-changing implications on my body – and how I’ve viewed it – this year. Three terms that have taken me from radical surgery to gut-wrenching 4am crying fits to six-hour A&E trips to, finally, accepting my body again.
Believe it or not but for a long time I thought every woman bled randomly throughout the month, that sex was usually uncomfortable and that periods were supposed to be heavy and excruciatingly painful. Even finding the full blown labour of each of my three children pretty much the same as one of my regular periods didn’t give me the hint that actually it wasn’t ‘normal’.
It took a cervical cancer scare and a consultant referral to realise this but, in February I was diagnosed with adenomyosis and a hysterectomy was booked in for the month following my thirtieth birthday.
Despite looking forward to being pain-free, I had concerns. As women, we carry so many expectations from others, from our looks to our clothing, to our sexuality and fertility. Waving goodbye to all of my reproductive organs made me all too aware that if I’m ever in a dating situation in the future, it might all be coloured by my lack of fertility. Would I somehow be surplus and dried up by the grand age of thirty? Would being on hormone replacement therapy (HRT) at such a young age would affect not only how others viewed me, but how I viewed myself?
“I thought every woman bled randomly throughout the month, that sex was usually uncomfortable and that periods were supposed to be heavy and excruciatingly painful”
Thankfully, or not as it turned out, my consultant decided against removal of my ovaries. I felt some relief at not needing HRT, mixed with a curious annoyance that they couldn’t just take everything in one fell swoop. And so I went down to theatre slightly agitated and nervous but hopeful that the pain and discomfort would soon be a distant memory.
Everything went well and, despite some hideous bruising and mild cramping, physically I felt much better than anticipated. Having had thoughts of hideous scarring and being bed-bound reliant on others, it was a relief to find that I was up and about for short bursts almost immediately. Emotionally, however, I was a bit up and down with occasional insomnia-driven 4am crying fits about my loss of fertility and the worry that people would see me as less womanly now that I was missing those organs. But, on the whole, I felt better than expected and hopeful as to my new pain-free life.
What I wasn’t expecting was to be plunged back into a world of worsening pain almost as soon as the six-week recovery window was up.
One day as I was going to bed, I was gripped with contraction-like pains, bleeding, and was unable to move. Putting it down to a late part of the recovery process, I visited the GP to have it checked out and left with my world turned upside down.
My notes said that alongside the adenomyosis that the hysterectomy was for, I also had endometriosis, which was what was now causing the pain and bleeding. Doctors had been picked up on back in February, but somehow I hadn’t been told about it at all.
Going home I googled this for the first time and I found endometriosis has no cure, and I found that while removing the uterus can lessen the symptoms, leaving the ovaries intact massively increases the risk of endometriosis’ return.
In short, my hysterectomy had been for nothing.
Since the hysterectomy and subsequent endometriosis diagnosis, I have been hospitalised twice due to flare ups, am on a cocktail of medication to manage the pain and help me to sleep. and I’ve hated myself for being so eager for a quick fix solution that I didn’t stop to get all of the information. The loss of my reproductive organs has led me to feeling unattractive and with very little sex drive – and when I do feel like it, sex is more painful than ever. Thankfully my partner is really understanding but it doesn’t stop the feelings that I’m failing him.
Despite all this, I’ve made it my mission to love my body again despite its scars and flare-ups. And I have slowly started to come to terms with what has happened and what won’t happen. Yes, there are occasional stabs of jealousy when people announce pregnancies. The endometriosis flare-ups have meant that I’m having to give up my child-minding job as the physical demands were too great, and I do have days when I feel incredibly angry that I wasn’t given all of the information.
But if it wasn’t for this then I would never have made the leap from a secure income to setting up my own content and copywriting business, I wouldn’t have been able to start writing my book about all of this and have it currently sat on the desks of three editors, and I wouldn’t be able to tell my story and hope that women everywhere will take the time to get a second opinion before undergoing such extreme surgery.
“Endometriosis can have such a devastating impact on the lives of its sufferers from infertility to depression and, of course, chronic pain and yet we don’t talk about it enough”
Endometriosis affects millions of women worldwide. It can take up to seven years from that initial GP visit to get a diagnosis and there is no cure. It can have such a devastating impact on the lives of its sufferers from infertility to depression and, of course, chronic pain and yet we don’t talk about it enough.
As women we are expected to bear the brunt of everything with a smile and to just plough on through regardless. It’s ingrained in us that resting and not being constantly productive is somehow unacceptable when it is simply self-care. Speak to others, let them know when you are struggling, let others who may be suffering know that it’s not normal and that there may be a medical reason. Raising awareness leads to vital research and funding that will, hopefully, one day mean that endometriosis is not a lifelong diagnosis.
Kayley Toyer is a freelance writer. You can follow her on Twitter at @KayleyToyer
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