I tweeted something at the weekend about cystitis and it was one of those quick, laying in bed at night, throw away tweets that was mostly for the sake of it and partly because I felt like moaning. However, I then proceeded to get several replies, a couple of messages and an email from a fellow sufferer before I went to sleep. When I woke up there was more. Girls want to talk about cystitis and so do I.
If you’ve never had it or had it like once a few years ago then it probably sounds incredibly lame that for a while it completely ruled and ruined my life. But that’s no exaggeration. For a about a year, I was constantly unwell and forever crouched on the floor feeling like I might pass out because I had UTI after UTI and received inadequate medical care to sort it out. Most 23 year olds wish for holidays to places like Thailand and maybe some sort of TopShop voucher windfall, but all I wanted was a healthy urinary tract. I didn’t choose the thug life.
If you’re prone to UTIs and suffer with recurring issues, then you’ll likely know how debilitating and horrible the common symptoms are. The waking up at night to pee about 8 times was the first one that kicked off my year of bladder hell. I started to think I was just drinking too much, so stopped drinking anything past 6:30pm, but since it made no odds I ended up going to a doctor who within a minute told me I had a ‘bladder infection’ and sent me on my way with three days of antibiotics.
I remember finishing them and not being able to tell if I was actually better or not, as I hadn’t started getting all of the usual symptoms or feeling particularly unwell, but that calm period didn’t last long.
I feel like with cystitis, the symptoms mount up until you feel so terrible you may as well have flu. That awful feeling of being desperate for the loo but then not being able to go, followed by stomach cramps, then feeling feverish and getting the shakes- not a recipe for a good time. And then there’s the burning. The awful, horrible, dreaded burning.
I started getting a UTI every couple of weeks when things were really bad. In retrospect it’s likely that I had less than this, but they weren’t clearing up, rather just lasting longer. I was asked to stop making GP appointments and was prescribed antibiotics over the phone because it was ‘easier’ that way. I urge anyone with ongoing, long lasting UTI symptoms to push for proper investigations. When you don’t regularly see the same GP it can be hard to pursue a lasting issue, but please don’t let it go. After being pushed from pillar to post and referred to the same set of ‘rules to reduce UTIs’ (you know the drill- peeing after sex, massive amounts of hygiene etc), I finally got referred for scans that revealed one normal kidney and one small ball of scar tissue. Voila. I was told this was likely partly down to the amount of infections and kidney infections I had endured plus some childhood infections- but it took a lot of pestering and an eventual hospital admission with a severe kidney infection to find any of this out.
My point is, the hell that is cystitis is no laughing matter. Not that you could ever laugh at it while you’re sat on the toilet at 3am weeping into a bottle of water- but it’s a total, utter bastard that makes life seriously miserable.
If there was a cystitis support group I would seriously go. I don’t get it anywhere near as much as I used to these days but if I ever feel those first pangs setting in it fills me with dread. As women, it’s one of those thing we’re told can ‘just happen’, and that we have to accept it- which is true but doesn’t help anyone who can’t get up from sitting in case they wet themselves or who needs to get off the train on the way to work because the fever strikes and you need to lay down immediately.
I realise this has turned into a complete bladder ramble but I just feel like connecting with people fighting the same issues and feeling like total crap because their bladder is harbouring bacteria like some sort of smuggler is really helpful. It’s nice to share the pain sometimes.