Tuesday 15 February 2011

Ooph! orectomy.

When I don't have a period, I think I purposefully forget how fearsome the pain is. It's a rubbish self-protection system. This most recent period convinced me that the removal of my right ovary is certainly looking and feeling like the best decision I can make.

I could barely stand by myself, as my strength was drawn away by the period; my legs threatened to collapse as I struggled to stay upright. Ish. Both my parents were propping me up, with each of my arms holding them so tight my knuckles were white and I almost couldn't let go. Shaking from the what-should-be-unbearable sickening hurt of endometriosis, I was close to passing out - I wished I had; it was a much more preferable state than the nauseating one I was in. Primal howling and childbirth-style breathing ensued. My hell was truly back, tearing me apart inside with its apparent white-hot dagger and the unimaginable terror it inflicts, every period, without fail.

This, reader, is my reality. It's not exaggerated; it doesn't need to be. There's no "Artistic licence"; I'm not a good enough "writer" to have that. This is how it is for me, and, sadly, hundreds of thousands of other women and girls. No, make that millions. For me, the aforementioned hell last 3-4 days. They're my worst days. And then it will carry on - but far less painful - for another 5-7 days. The general pelvic heaviness, the back and all over aches, and stabbing ovary pains are always there, every day, and periods are no let up. They drain me of my precious energy, or "spoons".

And what of the endometriosis period fear? And the constant feeling of "unwell", as "normal" for me? I'm really not sue I can do it much longer. Of course, I have to. I can't just give up. I have to stay alive, and live, and love, and be a daughter, a sister, a niece, a friend. I want to stay alive, but when life is like this... I sometimes wonder what the point is. I'm not suicidal, but this current way of things is so. f-u-c-k-i-n-g hard. to. cope. with. No-one can ever know how they'd feel in any one situation unless they've lived it, or had to make the choices associated with it, or take all the tablets to keep the inner agony at bay, as much as is possible with an ever-increasing tolerance to that medication.

One of my exceptional friends, Lisa, struck the (almost) perfect chord since the E major was discovered. She did so with a particular blog post in which she talked about the loss of her ovaries. As I type, and certainly for a year or so (definitely pre-laparoscopy), I've not wanted to have a child, I haven't felt the urge to be a Mum, I haven't felt "broody". Maybe I feel like this because I might not be able to, because of the irreversible damage to my ovaries from not having the correct treatment at the right time. Maybe it's because I don't want to have sleepless nights and shit and vomit all over me. Maybe... I just don't want to be a Mum. It's not instinct to want to reproduce. It's not necessary for the humans of Earth that Lucy with the curly hair has a child to further the cause of life.

Along the lines of what Lisa said, I'm still caring, and nurturing. If my Mum, or Dad, or brother is ill, I want to help them. It nearly broke me when my Mum was diagnosed, operated on and treated for breast cancer in 2009. When my cats have been ill, I've been in bits, waiting for the hours to pass, to find out how they are, if they're awake from anaesthetic, if they found cancer, or dodgy kidneys, or iffy thyroids. How on EARTH (without Little Lucys) would I cope if my own child were to be ill? Would I cope? There's no "have to" about it. I might not survive the anguish of it all. What if he or she died? That would surely be the end of my life. Maybe that's why I feel I don't want children. And if endo was as bad as ever, how would I look after a child AND me? I can't even look after myself now; how the fuck would I manage with a a child, too?!

Unless you know me - I mean REALLY know me - you've no idea how spiteful and nasty I can be when premenstrual. And I AM extremely unpleasant to be around. The anger and vitriol I feel toward strangers and my own, closest family and friends, is tremendous in the worst way possible. I want to hurt people, and make them feel guilty, I want to upset them. If I "did" hate, I'd hate it. I'd hate me. I have that whirl of cruelty spinning round and round in my head, and I can't stop it. It happens every. single. time. that I'm due for a period to start, whenever the hell it decides it will be. It never tells me. Why should it? I'm only the fucking HOST.

If I carry on like this, being unable to care for myself on the worst days of my periods without someone helping me do nigh on everything, how could I ever live independently? I wouldn't want to live alone. I couldn't. How can I ever recommence driving? How can I work? How can I travel without wondering when I will be ill? What life is this? When I am at the mercy of this vile hidden disease which controls my life through its pain and fatigue, and what what feels like never-ending stress, depression and doubts, and regrets, fear and overwhelming guilt for the burden I feel I place on my parents, month after month after month.

This isn't dwelling, or negativity. This is my life. These are the facts. If this is your first reading of my blog and you're this far in - hail you! This blog post is what goes on in my head, all the time. I wake up thinking about it, because I hurt the second my eyes open. I think about it in the daytime, as I take the codeine-based tablets. I think about it as I try go get to sleep, with myriad pillows and cushions to prop up my legs in such a way that nothing is strained and pained too much. It does get shunted to one side, sometimes, when I'm thinking about a tea dance, the clothes I might wear, the DVD I might watch, the food I might have for lunch, the yarn I might buy... But it's always there, somewhere, in the dark, in the corner, hiding, waiting to push me back to the unforgiving, chilling reality. This is what happens after years of neglect and misdiagnoses, and incorrect treatment, and ignorance.

Endometriosis destroys lives, and means some of the most unenviable decisions must be made, simply to cope with life. The decisions are often from very few quite unreasonable choices:

~ "Menopause or infertility? Agony or menopause? Agony or infertility?"
- "Uhhh, can I get back to you on that?"
~ "Not really, no. If you don't have children now, you never will! Have a nice day."
- "...oh."

It's not a problem just with periods. It's all. the. time. And I'm tired. I'm not lazy, I'm not not disinterested in the things I used to do. I miss them. I want to do them. I want to draw, and paint, and photograph (nearly) everything I see. I am, though, so very tired. I abhor it.

Now, if you don't mind, my bed is warm and my eyes are heavy, so I'm going to get to sleep. Shh...


  1. Lucy, you have my sympathy. I'm now 63. I got endo at around age 16, but it wasn't diagnosed til I was 31. Docs (all male back then in the USA) were either ignorant or thought I should be. When my parents moved out of our house in Sunnyvale, you could see the path I'd worn in the acrylic shag carpet, pacing back & forth in my agony. After diagnosis, I had laparoscopic surgery on the left ovary. It helped a lot, but I still -- years after menopause -- feel twinges that remind me of the cramps that lasted for days and made me want to knock myself out to stop the pain. At least I knew I didn't want children, so I was spared the pain of that choice. I can only hope that things go better with you.


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