Saturday 9 July 2011

A cutting reality.

He said "I do understand" as sincerely as he could and, through stinging tears and a broken voice, I said, firmly, "No, you DON'T understand."

How can one understand something when one has never known it? How can one ever know? One can not.

Since Wednesday's appointment with my consultant, I have felt entirely depleted of confidence and enthusiasm, filled with hand-flapping joy at watching Hugh Grant and Steve Coogan be magnificent on Question Time and Newsnight, respectively, and back down to that grim cave of anxiety and insomnia which have rendezvoused and grabbed me firmly, and cruelly won't seem to let go, dragging me further in to the dank, oppressive bleakness of depression. It's basically a dementor. But more real.

I've had a laparoscopy, and I know what happens. I know the less-than-ideal Sidal soap bathing/hair-washing ritual for days before the operation. I know the very painful cannula needle in my left hand, I know the woozy feeling when they administer the painkillers in to said needle, and the cold sensation in the back of my throat when they give me the anaesthetic.
I know the gas-induced shoulder pain after, the time I'll need to heal, how to move and how not to move, with what I'll need help, I know I'll feel completely shattered for days, and that my emotions will be unpredictable while the anaesthetic fades away.

What I don't know, though, is how to feel before a laparoscopy when already diagnosed with endometriosis. Why is it a problem? Because, like too many other women and girls, the first one didn't work. ("Didn't work" translates as "I still had terrible pain with my periods" - there was such hope that I may - after 16 menstrually-destroyed years, with pain hindering everything I've tried to do owing to the sickening agonies of undiscovered endometriosis - have some genuine control over my own life.)

It was better, for a while, although the fatigue, the heaviness, the laser-sharp stabs in and/or around my right ovary and dragging pelvic aches continued. And still continues. All of it does. But now I have the menopausal forgetfulness, what feels like bone pain and stiffness all over but especially my legs, hands and lower back. There's the insomnia, the nausea, the depressive tendencies to not care about what I love, what I absolutely adore, and cherish.

Whether it's hormonal from the treatment or a reaction to the reality which confronts me with no mercy, I'm not sure. I can't change anything for now; the 5th and penultimate injection is on Monday, and on the 2nd of August I shall undergo my second laparoscopy in 17 months.
My consultant wants to see if he can help the pains I have from my right ovary, and the normal-for-me pains of my periods.

I'm not hopeful.

I don't doubt his ability and skill as a surgeon; I curse and fear, equally, endometriosis and its surreptitious skills, its seemingly completely impervious nature and utterly brutal affects.

Every treatment I've tried so far hasn't worked sufficiently or not nearly enough for me to feel at least partly well.
  • Contraceptive pill: too strong in hormone dose and brings depression back to stay with me for months.
  • Contraceptive injection: simply not an option, because the chances are it will cause depression, as above, but it would be in my system and I wouldn't be able to stop it.
  • NSAIDS: in particular mefenamic acid - was good to begin with; now does next to nothing.
  • Keral: OK but still leaves a lot of pain.
  • Codeine: well... I still have that accidental dependence after the following method...
  • Mirena: seemed perfect - it caused awful pains for the 3 months it was in. And didn't stay there properly, anyway.
  • Implanon: another treatment likely to cause me depression, as well as (like Mirena) cysts to form on my ovaries, which is not good, as I already have polycystic ovaries, and endometrioma were discovered on each ovary during last year's laparoscopy.

I don't know what to do. What if surgery doesn't help? What if the ovary hurts as much as ever? What if periods and the pain and bleeding between periods carry on, and the pain before periods? What if the depression stays, and I can't lessen my anti-depressant dose and recommence driving, begin a kind of work, strive for that thing called independence I've heard so much about?

I'm not unbreakable; I can't keep my chin up or think happy, positive thoughts when it "all gets a bit much".
My optimism is limited to reason.
I bruise easily, both literally and figuratively.

Realism, not pessimism, is the rule by which I try to think and live. When this. is. reality, when all that is offered and tried doesn't stop me feeling unwell or ill almost all of the time, what am I supposed to do? What are we, the women and girls with this hopeless set of non-options, to do?

What would you do?