I went to see my consultant yesterday, 3 weeks after my surgery, a short and sweet appointment with Mr Trehan, our hero. Last Friday I realised how much my stomach/pelvis has improved pain-wise – which left me to conclude the ripping agony across my back and hips is sciatica and that perhaps I won’t be as up-and-about and recovered and off codeine as I thought I would be. Dang. It.
So here’s the synopsis of my surgery story:
Radical excision of recto-vaginal endometriosis (rectal, bladder, bilateral ureteric shaving plus creation of recto-vaginal and para rectal space), large bowel, ovarian, tubal, uterine adhesiolysis, right ovarian cystectomy, bilateral temporary ovarian suspension, coagulation of endometriosis on the surface of the uterus, extension of excision to the lateral abdominal wall above the pelvis.
Basic. I’m pretty sure the pain is not just gently implied here, for each of those procedures mentioned comes with a weighty sledgehammer of torture behind it. And I expect to be feeling all better? Yes, that’s a touch on the crazy side. The photos of my insides were delightful as usual, my word, the mess. Every time we saw a new sheet of photos Phil and I recoiled, made “what the hell is that?” eye contact with a smirk and nodded like good Churchill dogs when Mr T pointed out vessels, endometriosis and adhesions which we could not decode. “Why are those bits black?” “Because I cauterised (burnt) them.” Ohhhhhhhh. Then it all starts to make even more sense, just seeing it: hmmm, my insides have been burnt so I guess that would cause tons of pain. That’s without the cutting, excising and re-location of major organs.
Unfortunately my previous surgeon had pretty much hacked at my insides and for 7 years I’ve had ridiculous stitches in my ovaries without even knowing about them. What on earth. The travesty of my story, echoed I’m sure in so many others’, is that I was never told, never informed of any lack of gentleness, of unnecessary removal of healthy tissue, of potential good meaning but an absolute lack of understanding of the preciousness of a lady’s insides and lifelong consequences.
If anyone reading this has or knows anyone with endometriosis, please take the advice I received yesterday (if only I’d known this 8 years ago) from my specialist expert surgeon: NEVER let a general gynaecologist operate on your endometriosis, ALWAYS go to an endometriosis clinic specialist, no matter how far or wide you have to go.
Beg, borrow (don’t steal) if you have to go private to get the best treatment, because no amount of austerity measures or debt are too much when it comes to your health or fertility. Say hooray for Harley Street.
I have twinges in my stomach, cystitis sachets are currently my dessert (inevitable given the meds I suppose, still, annoying), I am gradually losing the weight that has accumulated due to lack of ability to exercise and depression, but my back at the moment is f*cked. Of course, given 7 hours in a terrible hip position in stirrups, it is hardly a surprise to have some after-effects, but sciatica/a slipped disc is not what I wanted. I want to be going out, indeed standing up, without being bent over in agony. Alas, woe is me. So frustration is the name of the game at the moment.
Thank you to Emily, Lauren, Steph T and Ron for being my rocks. Visitations are the best and I will never forget your kindnesses. And to Phil for just generally being my soulmate. There’s lots of things you learn as you get older, two being: you never have to do anything alone, and surround yourself with people that make life better. Trite but oh so true. Oh and another one, especially for those of us with delayed lives for whatever reason: it’s never too late to be what you might have been. This is just my planning time…