CW: descriptions of surgery, infertility, domestic violence
‘Now’s the perfect time for you to try and conceive naturally,’ the surgeon said.
He’d managed to remove an ovarian cyst, unglue my uterus from my bowel and do a general clean up of the ‘sticky mess’ I’d been harboring in my lower abdomen for years. None of this is surprising when you have stage IV endometriosis.
‘With so much blood circulating in the area, you’re more fertile today than you’ve been in a decade,’ he declared proudly.
In some ways, it was a fair comment. I’d been booked in for the procedure since February, when, after a third round of failed IVF, an ultrasound uncovered an ovarian cyst the size of a grapefruit.
I’d had emergency surgery at the time, but the cyst’s heft and location proved too difficult to remove. Instead, I was stitched back up and prescribed meds designed to bring on faux menopause - the theory being that if I didn’t get my period, the cyst would decrease in size and become operable.
By July the drugs had done their job. So far, so…erm…good?
What the surgeon banging on about my new-found fertility had failed to take into consideration, however, is how drastically my circumstances had changed. Facts he would’ve known if he’d taken a cursory glance at my most recent medical history - or noticed the scratches and bruises that still covered most of my arms, breasts, buttocks and hips (I’ll forgive him for not clocking the limp or the massive bump just above my hairline).
Five days before I had been at the same London hospital. In shock, I had come to A&E (that’s the ER to my friends in the US), after being thrown into a bookcase, chucked against a door jamb, pushed across a wooden bed frame and tossed onto the floor. After boxing me about the ears, the coward left for a planned trip to Spain, and I, with encouragement from the staff at the hospital and the domestic violence hotline I called next, went to the police.
Trying for a baby was no longer on the agenda.
***
Of course there is far more to the story (and all will be told in time), but this and all the other things my body has survived is what I’ve been thinking about this week.
In my last newsletter, I apologized for not writing because I’d been unwell and unfortunately things haven’t improved. The aforementioned surgery took place in 2016 and I was told at the time I’d likely need more in the future. It feels like that time has come - such is the nature of endometriosis.
With its familiar aches, twisting pulls and white-knuckle cramping, I’ve been spending my days falling in and out of agony, with only ibuprofen to take the edge off. Thankfully, I haven’t been unwell enough to risk the ER (TOO MANY HORROR STORIES) and I do have an appointment with a specialist in a couple of weeks time. Hopefully, I can hold out that long.
I won’t go deep into the challenges of the US healthcare system, but I will say the struggle of finding a well-respected doctor who takes your insurance, while also worrying about how much any treatment or procedure will cost, is the last thing a person should have to deal with when they are unwell.
If I were in the UK or Australia, I definitely would’ve have seen a doctor by now. And, yes, I realize how privileged I am to have those options available to me, but I’m also pissed off at the state of things here. And my mood isn’t helped by the pain. Grrrr.
To take back some control (and to quit whining), a friend recommended that I write down my medical history. This was ostensibly to appear more believable to any new medical practitioner I see in the coming weeks, but the practice has also helped me reflect on stories like the above. Yes there is pain in remembering, but look how far I’ve come.
Onwards and upwards,
Kate
Weekly Graces
A round up of beautiful things that I’m grateful for this week.
Paula Cole: My husband was Paula’s guitar player before my time, but he’ll be playing a few shows with her again in the UK in August. I can’t go, so I popped the painkillers and we went to her show in NYC last Sunday night. My Gen-X docs were BLOWN RIGHT OFF. What a force. So much power, emotion and undeniable talent. She gives a great hug too. Go see her if you can. And say Hi to Ben for me if you go to the UK shows.
Grace Tame: My favorite of all the Graces. Australian of the Year, staunch activist for survivors of childhood sexual abuse, fellow endometriosis sufferer and someone I’m lucky enough to call my friend, Grace posted about own journey with this endo this week. Too many of us share these same scars.
Thank you. Even in the midst of unbearable physical pain, you find a way to create beauty from horror. I have heard of endometriosis but don’t know much about it so I appreciate the information and raw details. More than that, your story is such an eye-opener as to the tunnel vision doctors and anyone can have when talking to people. I think many people tune out the person they are speaking to and are so self-centered that their audience is irrelevant. Thank God you are a survivor on so many levels. 🩷
Quite courageous to be so forthcoming with an extremely painful part of your past.
So sorry that you’re experiencing such immense pain, now.
I’m here for whatever…sending much love.xo