This post is for all my lovely friends but especially those of you living with #chronicpain, #chronicfatigue, #endometriosis, #adenomyosis and assorted debilitating, often invisible, conditions.
On the 1st of Jun, 2018, I finally had the hysterectomy I had been begging for for over a decade to address the severe “period pain” which has stolen between 1 and 3 weeks of every month of my life for the last 30 years. That’s YEARS lost, jobs lost, opportunities interrupted, my wedding day spent in agony and unable to dance.
Inside, my surgeon found:
* one felopian tube wrapped around and adhered to my uterus;
* that lump of uterus and tube adhered to my bowel.
After surgery, pathology on the uterus found:
* on the outside of the uterus, 2 “miscellaneous, benign lesions, haemorraging (probably where it had been adhered to my intestines and recently ripped away);
* within the muscle of the uterus, adenomyosis (like endo but inside the muscle, so nowhere to expand or escape as the tissue attempts to shed each month);
* 7 fibroids, 3 of them haemorraging (my last two “3 week periods” had, in fact been these continuing to haemorrhage)
In the weeks and months as I’ve recovered from the surgery, I have discovered that even on my “good week” each month, before the surgery, when I thought I was not in pain, I was wrong. Only now that I’m free of it, have I noticed that I brace for pain with every sneeze, every step, every cat jumping on my lap.
Whatismore, the IBS I have suffered for decades, been medicated for, asked family to adjust meals for, the reason I missed out on travelling to so many less accessible areas of Japan and Thailand – or anywhere without a known bathroom – has disappeared.
And here’s the real kicker: that chronic fatigue I’ve been suffering on and off for 25 years? That I had to drop out of Honours because of and then spent 3 years being poked and prodded and drained and tipped upside down to make sure it was definitely inexplicable? Yeah – that’s going away. I’m waking up refreshed! I still get tired quickly, but when I nap I feel awake afterwards! Seems being in constant pain from your UTERUS STICKING TO YOUR BOWEL is fatiguing. Who knew?
So, finally, to my point. I know that as some of you read this, you’re relating to the story, and you’ll understand why, over the weeks since the surgery I’ve also discovered that I’m angry.
Several weeks ago, I read an article in the Guardian in which the journo writing it shared her story of years of period pain and finally getting treatment; it was EXACTLY THE SAME as mine. I groaned, I paced, I shook, I cried. I couldn’t stop crying. At the 5 hour mark, I called Beyond Blue (1300 22 4636) and a wonderful woman on the other end listened and gently told me that I wasn’t just angry, I was grieving.
She was right.
When we hung up, I had stopped crying, had a plan to get help (I’m okay 🙂) and a realisation that I needed to do something positive to work through and use that anger, not just try to get past it.
After reaching out to the incredible women in an Australian writers group I’m part of, I know what I’m going to put all this powerful anger and compassion – and, at last, relief and joy – into: STOPPING THIS SHIT.
Women’s pain is not being addressed properly – there’s data on it – and that is robbing us, our families and friends and our community of too much womanly goodness! (Take that as you will 😂) The best way to be part of fixing this problem is to participate in the research being done to back up policy decisions, disseminate that information to all stakeholders (including sufferers!) and to try to influence the next generation of doctors. I don’t know what is it they are being taught that results in GPs and gynaecologists refusing a hysterectomy to a woman in pain because – even over 35 – her decision not to have children is not considered a choice she can make for herself (yes, this was my story and I’ve heard the same thing over and over) but it has to change.
On August 19th, I went to the Melbourne Uni open day, to find out about applying for the Master of Public Health and info about help for my remaining, chronic but manageable conditions. I have the pre-reqs and am fairly confident of getting in, but I would need to get a Commonwealth Supported Place to afford it and I think that’s pretty competitive, so I may need some fingers crossed for me!
I’m in the midst of preparing my application, now and I’ll be sure to keep you updated.
As always, wishing you all courage, creativity and curiosity in all you do and if you, or anyone you know feel overwhelmed, or need a little help, don’t hesitate to call Beyond Blue – they are truly wonderful.