Thursday 9 August 2018

To my Cysters and Cyblings (Ovarian Cyst Care Rant)

 Yep, it's that time again kids! Sit down, shut up and settle in for another edition of Angry Bitch Rant Time. Today's topic: healthcare.


 Ten years ago my Mam took me up to the Queen Elizabeth Hospital with severe abdominal pain. I was squealing, crying and could barely move. I'd never felt anything like it. I was rushed through triage, saw several nurses and doctors, given morphine while waiting for the consultant - and found out that I'm allergic to morphine so no more of that for me! It was a chore just opening my eyes by the time the consultant got there, a nice young doctor who - I shit you not - was the spitting double of Arnold Rimmer; my Mam agreed so it wasn't just the morphine talking. He'd been called down to confirm that, yes, it was appendicitis and, yes, slice her and dice her, get the bastard out. But after a feel of my tummy he stopped and frowned, and asked me if I'd had pain like it before. I said I'd had similar pains a few weeks ago but they'd been on the other side so unless I had two appendices then it probably wasn't that. He frowned again, explaining that (thankfully) they wouldn't be whipping me down to surgery and I'd be kept overnight for more tests.

 As I was only 14 at the time I was taken over to the children's department and once my Mam went home at about 2am a nurse came in to chat to me and give me more painkillers. When I'd washed down the codeine and ibuprofen she asked if I'd had sex recently and immediately I panicked. Firstly, I was only 14 and thought I might get into trouble; secondly, could I be pregnant or have some horrible disease? But the scariest part... I hadn't, I'd been raped a few month beforehand. I didn't have the vocabulary at the time to tell her this so I just said yes and started crying. To her credit, she comforted me, reassured me I wasn't in trouble and she wouldn't tell my Mam, and rushed a pregnancy and sexual health test for me. Thankfully I wasn't but that just raised more questions. It wasn't my appendix, it wasn't pregnancy or and STI, so what could it be? Over the next couple of days I was kept in hospital (not a great way to spend my half term) and given I was on the children's ward I was bored out of my mind and surrounded by screaming kids. I got a lot of reading done but I was scared, in pain and bored while waiting for the results of blood tests and waiting for an ultrasound. 

 They day after my scan my best friend Devon came to see me. The visit did me the world of good, while it didn't stop me being in pain it was easier to forget about it - and she brought me Skittles. So far the painkillers I'd been on weren't taking the pain away but doped me up so much that I didn't care. We were right in the middle of giggling about Doctor Rimmer when another consultant, a white haired, well spoken, older man - late 50s I'd say - and without introducing himself or asking if it was okay, he bluntly said "lift your shirt please, I'm going to feel your stomach". That was uncomfortable enough on his own, not only because he pressed hard and his hands were cold, but because this stranger skipped introducing himself to the 14-year-old girl he wanted to have a feel of. In any other context this would be gross and criminal, but because he's a doctor it was just put down to poor bedside manner. Well, some people put it down to that, I put it down to him being a massive dickhead. After a feel and a frown he explained he'd looked at my scan and all he could find were ovarian cysts. Case closed, please cure me - right? I bloody wish.

 According to Doctor Rude "ovarian cysts shouldn't cause pain, it must be something else." I was discharged after this consultation and put on the waiting list for more outpatient tests for everything from digestive function, kidney function, food allergies. But when they all came back clear they decided they finally had a concrete diagnosis: it was Psychosomatic. 


 Calling it psychosomatic pain was basically a fancy way of telling me that they believed it was all in my head and that I must just be another attention-seeking anxious teenager. Yes, I was (and still am) incredibly anxious. Yes, in later life I was diagnosed with non-epileptic seizure disorder triggered by severe anxiety. The definition of psychosomatic pain is "pain disorders caused by psychological stress or anxiety and is characterized by chronic pain in more than one area and lasts from months to years". I'm not an expert by any means but looking back, if I had disclosed my sexual assault to them then I can see why they'd think it was psychosomatic, but I hadn't. As far as they knew I was pretty happy, if a little skittish, so I must be looking for attention. I would have happily let it go and tried telling myself that they were right, it was all in my head, if the pain didn't keep coming back.

 Every now and then over the past ten years I've experienced the same agonising, stabbing, burning pain. Unable to stand, unable to sit up, unable to move, sweating, shivering, curled up and crying. I've done all the right things, gone to my GP and gotten a referral to gynecology, and been told after most of those scans "yes, you have a sizeable ovarian cyst, it should go away on its own - just put up and shut up". A few years ago I was hospitalised again with suspected appendicitis, though insisted the whole time that I was just taking up a bed that somebody else needed, but they wanted to get to the bottom of it. I was seen by another male consultant who again, had an appalling lack of bedside manner; this time not even bothering to ask for consent or speak to me at all - instead he woke me up by feeling my stomach while I slept. Of course being touched by somebody with such cold hands woke me up and led to tears and panic, while he made a sub-par effort to calm me down and explain who he was and why he was there. He couldn't understand why I was so angry and shouting at him for just "doing his job". In the end I was transferred up to Gyno, crying the whole way out of pain, exhaustion and frustration. Yet again, it showed what I knew was there: a big fat cyst the size of a tangerine.


 I'm writing this now because I'm having a particularly bad time with them at the minute and although I know I probably should seek some sort of medical attention, what's the point? I'll just be told yes, it's cysts again, toughen up and go home. And I'm far from the only one who's experienced this sort of treatment (or lack thereof). So many uterus-having people experience pain with ovarian cysts, and so many other gynecological conditions that leave them in agony, but all they hear from their healthcare provider is "yes, it comes with the territory of having a womb, deal with it". Surgical removal of cysts is only considered when they're extremely large as many do just go away on their own, and I'm sure that others who've gone through the unpleasantness of one bursting... Our doctors need to be doing better. We need more research into non-surgical treatment for ovarian cysts. Yes, small ones are normal, many people will get them at some point, and they do go away on their own. But when you go through years of pain and all you're advised is to tough it out because nothing can be done, we need to find something to do about it.

 My experience is just another case out of many, with sans-uteri medical professionals refusing to believe the pain that we're in because it contradicts what their textbooks say.  There's no two ways about it, just because you have a degree doesn't mean you decide how much pain my body is causing me; and just because you've never experienced it personally doesn't mean that it can't happen. This is my body with its fucked-up ovaries and fucked-up other parts that is screaming out "I'm hurting, please help." So when it comes to gynecology, here's the bottom line: