Hey, let’s talk about bladder pain!

We need to talk about bladder pain

Sorry to anyone who doesn’t want to read all about my bladder, but anyone who knows me in real life will know just how much I talk about my bladder and it’s not something I’m embarrassed about! I see a lot of posts out there about conditions such as IBS (like mine), smear tests (again, like mine) and other “embarrassing” topics, but bladders aren’t ones that often get discussed. I’ve had more than my fair share of bladder problems, so I’m here today talk all about those because, as an “influencer”, I want to use some of that influence for good.

Cystitis was a thing that plagued (and still sometimes does plague) my life for a number of years. When I was younger, I suffered with it a couple of times as a child which was just as much fun as you’d imagine it would be. Then when I was a teenager, it came back, and it came back with a vengeance, each time worsening in pain. I mentioned it in passing as early as 2011 in my blog and several times more since then too. I sat through my A Levels with a note that I had to hand to every invigilator which explained that I might visit the bathroom several times throughout the exam, and I was squirming in my seat in pain through several of them too.

At the time, I was suffering badly with almost constant tonsillitis too, which meant I was taking antibiotics a lot of the time and we think that may have contributed to the fact that my immune system wasn’t really fighting it off.

By the time I’d tried what seems like all the different treatments for cystitis, I was desperate for something to change and make it better properly. It can be really frustrating to have people just brushing it off, joking about it being the “honeymoon disease” and suggesting drinking lots of cranberry juice – I’ll be the first to tell you that cranberry juice does little to absolutely nothing to most people with persistent bladder infections. I’ve had every cystitis relief sachet imaginable (and the taste of them makes me feel sick to think about nowadays thanks to the amount I’ve had…none of which do a single thing), various painkillers, cranberry capsules, several antibiotics and more.

By the time it was affecting my work and career every few weeks, we decided enough was enough. I’d “upgraded” from bladder infections to kidney infections every so often too thanks to them not being treated properly. My bladder had developed a specific kind of spasm. My infections were no longer simple burning pain and frequent urination; I had constant bladder, urethra and lower abdominal pain – a sort of constant tugging down below. When it gets bad, I can’t sit; I can’t stand. I have to wander at a slow speed, round and round the room in circles, drinking pints and pints of water and stocking up on painkillers until it passes. It’s pretty horrendous.
And I was getting blood in my urine weekly. Please note, if you have blood in your urine, please contact your GP – it can be dangerous. Mine were aware of the problem and that’s why I’m talking about it today, because of stories like this:

I was told a story of a friend of a friend who had cystitis but had no idea what it was. She persevered through weeks of pain, burning, frequent urination until she finally started getting blood in her urine and went to her doctor only to find out a few days of painkillers would have sorted it without all the hassle. Simply because she was too embarrassed to talk about it. Because people just don’t really. I make sure to talk a lot about my bladder because cystitis, UTIs, bladder infections (whatever you call them) are really painful and can usually be solved really easily.

My case is quite different to many. If you have more than 3 in a year, you’re supposed to be referred for further investigation. I was getting 3 infections in a month and the doctors were regularly putting out antibiotics for me trying to sort it because I phoned up so frequently. It’s simply a case of that they were so busy and I knew what I was suffering with, so it was getting overlooked.

And so when I finally got referred, they stuck a camera in my bladder and weren’t surprised to tell me that I actually had an infection in my bladder that was bleeding as we spoke. He flipped the screen round to show me and I could see blood swirling in my urine and the insides of my bladder pockmarked and scarred. Basically, it had got to the point where I had a constant infection that the antibiotics I was being prescribed weren’t working any more, plus (if you wanted further detail!) I had a narrower urethra than it should be naturally.

In 2013, I had a procedure done to widen my urethra plus some intensive antibiotics to treat the persistent infection, and my life has been so different ever since. I was warned that immediately post-op, I would feel quite a lot of soreness and pain, but because I’d lived with that pain almost constantly for a few years, it was no worse than a normal day for me aside from feeling a little sleepy thanks to the anaesthetic. I realised that I’d been pretty much exhausted from living with chronic pain in my bladder and it massively helped to have this procedure. Now this won’t help for most people because my urethra and bladder problems are unlike many others, but I suppose my story is a sort of warning: if you suffer with bladder pain, cystitis, UTIs – do what you can to get it seen to properly when you can, especially if the infections are persistent. It took too long for me to get looked at until it got to a point it was too late to cure it without surgery.

I still live with some bladder pain nowadays. If I drink too little water during the day or get slightly dehydrated, I will almost immediately start with bladder pain thanks to the internal scarring – it stops me getting dehydrated though which is good! I still get bladder spasms which aren’t a lot of fun. And I still get the occasional infection, but it’s mostly the “normal” kind, rather than the kind I’d finally got to before my operation. And bladder pain can affect your daily life massively. So please don’t be scared to talk to people if you’re suffering with infections – they can mostly be treated quickly and easily. Plus pretty much every woman has experienced cystitis at least once – you’ll be able to tell by the wince and flinch when you bring it up!

2 Comments

  1. Lynsey
    April 10, 2017 / 8:53 am

    This was vey interesting and such a shame you had to go through all that, I’ve had a few over the overs, cystitis, uti’s and kidney infections are they are so painful but luckily I dint get them often and not as much as I use to. Think it’s great you can talk about it and share your experience:)

  2. Janet Rodgers
    April 10, 2017 / 7:10 pm

    I think its a good thing to talk about, as it may encourage someone who is really embarrassed to do so too! I can understand what you went through as many years ago one of my sons was often unwell, we thought he just had a lazy bowel, but one Sunday morning he rolled about the floor, our local Pharmacy opened up so he could get medication. I took him to Surgery next day and insisted on a referral. The reason was my toddler was training, going to the loo with his big brother to be shown how its done as he refused anything other than the potty (it worked a treat, he became a big boy) one age 10 one almost 3. Just before the incident of rolling on the floor, the little one said, I can pee better than David and can pee far more! That made me realise there was a problem as he had had a kidney infection not long before and I had discovered boys aren’t prone to kidney infections, girls are! Anyway, I got a quick referral as he also had another Kidney infection. He too had a narrow Urethra, a quick but uncomfortable operation for a 10yr old and he has been well since. He still has to ensure he drinks plenty, fortunately he’s like me, drinks water, but he also has, I think its yearly checkups to ensure his kidneys function properly and so far has not needed it done again as they had said he may. Ironically, he was really embarrassed because his toddler brother could pee better and had announced it! Thankfully as the problem was diagnosed and dealt with urgently! He has children of his own and tries to make sure they say if there’s a problem as his little boy is shy, like he was at that age, hence the reason he hadn’t told me it was so difficult to pee as he was suffering so much with the lazy bowel! So its good to hear and be aware of your problems as you might think, oh, that’s me!! and get sorted instead of suffering!!!!

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