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Posts: 27
Reply with quote  #1 
Hi all. I had a Cystodistention about 8 weeks ago and have had a horrible time ever since. Basically it has irritated my bladder which has made my anxiety go crazy and I've been off work a lot. One of my main issues now is that I seem to experience a lot of frequency in the mornings when I wake up, which then makes me anxious for the rest of the day. I'm not too sure why this is or if anyone has any suggestions as to how I can help it? It's incredibly frustrating and really getting me down, wish I had never had the procedure done, it was at least manageable before. Thanks

Posts: 16
Reply with quote  #2 
Hi Lisa,

Have you had a follow-up appointment with your consultant yet? I think it is usual to have one about 6-8 weeks after the procedure but I'm sure waiting times are different across the country. You should definitely speak to them about it, they may be able to suggest some medication to help with your frequency symptoms or offer you support in other ways.

I had my cystodistention about 7 weeks ago and things have been tough since, the pain has developed/progressed/changed since the procedure. I would say it has made me worse as pain was not too much of an issue before. I have my follow-up appointment tomorrow and will definitely be bringing this up with my consultant. I have recently been prescribed amityptyline by my GP.

You have also mentioned your anxiety, which I can totally sympathise with as I also suffer from dreadful anxiety and having IC is making this much worse. Try not to panic about your symptoms, it may be a long road but there will be something that helps you and it won't be this way forever. Have you ever tried anything to alleviate your anxiety such as exercise, yoga, meditation? I do daily yoga, have acupuncture and I'm trying to meditate more. I also make sure I focus on the activities I enjoy and can do, e.g. cooking, walking, and do more of them as it lifts my spirits during dark times. It is really difficult to find the motivation to do these things but taking some steps to try and keep on top of the anxiety can gradually build up over time and make a real difference. If you can think of anything that has previously helped your anxiety it might be worth trying to incorporate it into your daily routine. And of course if the anxiety is truly overwhelming then go and see your GP.

Hope you start to feel better soon.

Anna x

Posts: 27
Reply with quote  #3 
Thank you Anna, you're the only person who has actually had the same procedure so far that I have found on this forum. I haven't had my follow up appointment yet, I was told 12 weeks when I had my procedure done but not heard anything so far. It's just so hard at the moment as I wake up and get anxious as soon as my bladder flares up, and I feel like I can't go anywhere or plan anything. I only suffer with frequency, no pain or anything else, but before I could manage my condition by doing things early on in the day and drinking after I'd been out, but now that control has been taken from me. It is definitely worse than before, which I wasn't assure was a possibility, I knew it might not necessarily make it better but I didn't think it could make it worse, I also suffer from IBS which has now flared up from all the stress. It's such a lonely condition, I just wish it would all go back to normal [frown]

It helps knowing people are here though. I hope you feel better soon. And I hope like you say, this is temporary and that time is a healer.

Posts: 264
Reply with quote  #4 
Hi Lisa, i also had a cystoscopy hydrostention and biopsy 8 weeks ago and like you regret e very minute of it.I like you am suffering much more frequency and feeling no relief after voiding, i also have soreness in my bladder something i never had before the procedure, also i have stinging and burning.My symptons like you were livable with but now my anxiety levels are really high and also my bowels are constantly on the move, nightmare,hopefully things will settle for us, never again will i ever let anyone near my bladder.Just trying to eat some lunch but no appetite.Stay strong.Best wishes Heather.
H.M Whitworth

Posts: 17
Reply with quote  #5 
I've had a cystoscopy with hydrodistention  (HD) a few times now and my frequency does go up for the 2 weeks immediately afterwards but then steadily decreases till around the 3-4 weeks mark, I have a 50% reduction in frequency compared with before the HD and a small reduction in pain.  
I too have increased frequency in the mornings, specially when I've slept well and only woken up once or twice.  I think the reason is concentrated urine.  However, this has had a considerable impact on my life because if I have to teach from 8.50am, I have to get up around 4am to deal with this frequency.  
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