Remember this one?!
After my operation on Friday (13th, yes – lucky I’m not friggatriskaidekaphobic eh) I thought I’d blog about my recovery.
First, my mini homage to that childhood beaut of a spooky book, Funnybones, because – weirdly I know – this is what my diagnosis made me hum:
Dem Endo Bones…
My bladder’s connected to my uterus,
My uterus is connected to my small bowel,
My ovaries are buried in my pouch of Douglas,
That’s why I’ve felt so shit.
Yeah, yeah, crap I know. So now I definitely feel like I have funny bones. Or just funny insides in general really.
I had a diagnostic laparoscopy privately and, lordy, am I happy I went private even if I’ll be paying back the money for the rest of my livelong days. I know if the NHS went in there I wouldn’t have much left inside me, they’d have just given me a hysterectomy. Not an option. My womb and ovaries are vital organs, not inconveniences to be discarded because dealing with them would be just too difficult or expensive.
My partner and I went up to Yorkshire from Essex for this procedure, after much saving and contemplating. My quality of life has dropped to a ridiculous extent, even if on the outside I seem ok. There’s superficial stuff like I can no longer wear trousers or tights or anything with a waistband because the pressure on my stomach is too painful; I have to lay down for at least an hour after work because it feels like my organs have to rearrange and ‘reset’ themselves after a day’s teaching; I can’t stay out late because of the daily pain; my weight is unpredictable; my tummy is continually bloated; I can’t run or even walk too far because I get such a bad stomach ache and bleed. On a deeper level, and one I have ignored for ages, I have pain each and every day. For every moment. Going to to the toilet can be agony. Constant cystitis, bowel spasms, nausea. And that’s before the haemorrhage that is is my period arrives. Yet on the outside, all A-OK.
Going in for my operation was incredibly scary but also a relief – finally the time had come to have a look. I’ve felt this ‘tangled’ feeling inside for a long time and I’ve constantly questioned my pain and thought, maybe I’m exaggerating, perhaps I have the converse of what I thought – a low pain threshold. Couldn’t be that bad could it? Not after having two open surgeries in 2006 and 2007 by a woman gynaecologist (which actually I’ve learnt makes no difference – skill with the vagina is not gender biased towards those that happen to have the privilege of owning one themselves).
After I came round, after the terror that floods me in the recovery room when I can hear everything but am unable to speak, after the extreme nausea of the morphine, after being straw-fed water by my brilliant other half so patiently, after a couple of hours of urinary retention and the potential catheterisation, after the most intense, unsettling and all-consuming oxymoronic insomniacal tiredness, after 7 hours of waiting I found out the truth: it were bad. Real bad.
Mr Trehan, my amazing surgeon, sat down calmly and said I have stage 4 endometriosis, recto-vaginal (endo has 4 stages – 4 being the worst – then amongst the different types of endo, recto-vaginal is at the worst end of the spectrum). Now, I have had bladder problems for 4 years at least, including severe and chronic pain. I have told doctors I think I have endo on it and that it is blocked in some way. All without seeing inside myself, just by intuition. I’ve been told that can’t be true. Lo and behold, just like my ignored self-diagnosis of endo itself at the age of 17, it was ignored – not just ignored, scoffed at. Does it make me happy to be vindicated? No, not at all. I wish it wasn’t there. But, unfortunately, it is.
So, I have endo on my bladder, my bladder is attached to my uterus by endo and adhesions (scar tissue), my uterus is attached to my bowel, my ovaries are buried in my pouch of Douglas, which has been obliterated (his words) by the endo, all down my peritoneum, on my vaginal wall, in my bladder and inside my actual womb. My stomach, my pelvis, my heart and my soul dropped through the floor. All I could think of was that he was telling me I am untreatable and I have to live this semi-life of twisted insides forever. I asked: “Is any of it treatable?”, he replied, “Absolutely”, as though I was crazy for underestimating his surgical skills. It is only just sinking in: that someone can finally help me, that maybe I won’t have to pretend I’m ok for any longer, that I can finally sob with relief that my ovaries and womb will be saved and all the painful bits dealt with as much as humanly possible.
I feel so tainted, so ashamed and so alone, so not believed, so overlooked and actually pretty butchered up to this point. Mr Trehan told me, with such disgust and anger, that he could actually see visible stitches on my ovaries from my previous operations. I feel like a fool for believing in Miss Asha Sharma of Essex. Obviously all allegedly etc, but having open surgery was completely unnecessary, can only address approximately 20% of any endometriosis and causes so many complications from adhesions, which act like glue on your insides that is does far more harm than good. Don’t let it happen to you.
So today I am sitting here all full of contradictions: relief and fear; happy to have found help, crying at the pain; wanting to ask people for help but not wanting pity. And the absolute last thing I need is anyone casting the word ‘fertility’ near me. This is first and foremost about my health. Forget my age, the biological clock, what everyone else is doing – please just think of holding my hand.
The funny thing about laparoscopies is where the gas they pump into you ends up, obviously the ol tum but also the shoulders and crikey knows where else. My stomach is practically burnt from my continual electric heat pad smothering. I can’t believe I didn’t even have an overnight hospital stay, I came home yesterday after being driven 300 odd miles home by my wonderful sister and brother-in-law. Then the pain kind of got worse and the codeine was knocked back.
I don’t want anyone to ever go through anything like this – no one I know family-wise or friend-wise will ever be alone like I have been. Right now I need to concentrate on getting well, eating well and just letting it all out. The poisonous thing about endometriosis is the keeping it inside: secret and hidden like it’s shameful. Periods are natural, pain with them is not.
In the future we are determined to do something constructive about it. Watch this space.