Desperation is something that the chronically ill experience on a regular basis. It is often the driving force behind our endless internet searches, our impatience with cloth-eared medical professionals and our, apparently, ‘finicky’ eating. But it is also often what leads us to accept a seemingly pointless, or downright risky, treatment option; even though we know it probably will not provide that fiercely desired light at the end of the tunnel.
It was chasing that almost non-existent light that has led to me being so quiet, of late. I have been trying to keep up with all of my commitments, including this blog, but the past few months have felt like a return to my ‘year of hell’; burying me under unfinished projects and broken promises.
Last summer, after an unexpected spell in hospital, I had the severity of my situation with Endometriosis explained to me. The doctor who had told me a couple of years ago, in hyperactive excitement, that I needed a bowel resection was right – only what she had failed to tell me was why.
As it happens, there is a significant portion of my bowel permanently adhered to my uterus. What this means in terms of treatment, is that any attempt to perform a hysterectomy will be complicated and in need of two separate surgical teams working in tandem. In addition, the Colorectal team may decide that the organ needs to be ‘rested’ for a few weeks, which would mean inserting a stoma. While that is something I may be able to come to terms with, I’m pretty damn sure it will forever change my husband’s perception of me. So, with all that in mind, I knew I had to take the only option left available to me – chemical menopause.
Prostap is a drug initially used to treat prostate cancer but can have oestrogen dampening properties in hormonally unbalanced women, like me. It’s also a drug I have tried before, with less than stellar results. But a lot had changed in the eight years since it was last in my system and, to be fair, what other option were there? It was either ‘take the damned drug’ or get to know the A&E doctors so well that they’d be inviting me to family gatherings.
I listened carefully as he re-explained the procedure, the initial effects and what the final outcome should be. The first month was going to be hell, as the drug injected into my lower abdomen would cause an explosion in hormonal activity, inevitably leading to a flare. The second month would be a ‘settling down’ period where the oestrogen levels would begin to drop, leaving me with fewer symptoms. The third month would be the one that turns me into a post-menopausal woman: no more bleeding, but a need for Hormone Replacement Therapy.
The initial burst of symptoms was not as much of a bomb as I was expecting. I rode it out with rest and heating pads, barely touching anything stronger than paracetamol. And much like young Sarah lost in the Labyrinth before the ground gave way beneath her feet, I told myself that if I had just experienced the worst the treatment could offer then weathering the next few months would be a piece of cake.
After the second injection, I received a powerful reminder of who’s boss (hint – it wasn’t me…) I was reliving those heady days of summer 2016 when I crawled to the front door to greet the paramedics. The only difference this time was that I had full knowledge of what was happening so, even though it felt like someone was literally ‘having my guts for garters’, there was none of that bewildered panic that had me reaching for the phone the last time.
The what should have been non-existent bleeding subsided just about in time for the third injection. Once again my ovaries continued to party, completely ignoring all of the protestations to keep the noise down. Meanwhile, the rest of my body had taken up residence in Side Effects Alley. Heat-induced insomnia, rusty metal joints, and muscles constructed from soggy concrete. Hope started to tiptoe towards the door.
The fourth injection came with some more assurances that what I was experiencing was little more than an unexpected hiccup, but with no real explanation as to why my body was behaving in such an erratic manner. I crossed my fingers and trusted that this time all the pieces would fall into place.
This is the point where if I were living in ancient Greece (or the 31st century) I would have been convinced that the Gods of Olympus had cursed me…
It began in a fairly benign manner; an unanticipated ‘breakthrough’ bleed on New Year’s Eve (good thing I wasn’t going out, eh?) I wasn’t in a vast amount of pain, so I took myself off to Battersea Park to join the regular Saturday morning skate group.
At around three in the afternoon, having noticed no change in my situation, I breathed a sigh of relief believing that I had dodged the bullet that had been chasing me since the treatment began. However, by the time I had watched Mouni Roy’s performance on Mirchi Top 20 I knew that something was amiss.
There was some kind of monster squatting in my uterus, tearing out huge chunks of bloody flesh and sending pulses of excruciating pain from my core to every extremity. I crashed out on the sofa, semi-delirious and feverish; drifting in and out of wakefulness while trying to watch (the rather brilliant) Kapoor And Sons. I saw in the new year bleary eyed and snapping at my husband to get out of the way of the subtitles. I bled until the 11th of January and spent almost five days completely incapacitated.
A week later I was back in the hospital waiting room. I had let go of the idea that the medication could work this time and instead tried to figure out when my worst days would occur, so I that could plan accordingly for the potential onslaught.
As always, I was very honest when the consultant asked me how the previous month had been – why sugar coat something that’s only going to leave a bitter after taste? The usually jovial doctor looked concerned. He sighed and told me that I shouldn’t still be losing blood.
FANFARE PLEASE! HERE IS THE SILVER LINING!
He looked at me and said, “this isn’t working, is it?” If that didn’t sound as though it deserved Angelic trumpets, try looking at it with this context.
It has never been suggested to me that a treatment or medication that clearly wasn’t working should be stopped. Ever. Even when I’ve pleaded with doctors to try something else, I have always been told to ‘give it a little more time’. With oral tablets it’s easy, once you’re out of the thrall of the white coat, to ignore doctor’s orders by simply refusing to take them: but with something more invasive like the Mirena Coil you can (as was the case with me) be told that the settling down period could be anything from three months to a year. A year! Technically, it doesn’t even take that long to make your own wine! My own coil was out of position, embedded in the wall of the womb and poisoning me, but I still had to beg at least three medical professionals before I could get the insidious little device removed.
Yet here was a consultant telling me that there was little point in subjecting me to injection number five if injections one to four were utterly useless, but simultaneously not discarding me as an ‘unifixable’ nuisance. Truth be told, I was really quite taken aback.
And relieved. Relieved that someone was actually listening.
We made a plan to switch the medication to a drug that is supposed to have a similar effect, and monitor my reactions much like before. There is absolutely no guarantee that this drug will work, and I’m not sure what I’ll be left with if it doesn’t, but the point is that after well over a decade of medical experimentation, the guinea pig is finally being heard.