Interstitial cystitis - any point in having a cystoscopy?

[SassyOliveKoala]

I’ve had symptoms of urinary frequency and urgency since the summer and have a cystoscopy appointment. I’m now really anxious to have it and wonder if anyone could share their stories / give me any advice please?

background is- last summer I had a UTI (all the classic symptoms of burning, peeing all the time with not much coming out etc). Had antibiotics and it didn’t fully clear. X2 positive urine tests for E. coli. 4 antibiotics later and negative urine tests but a daily struggle of urinary frequency and urgency (not burning/stinging etc). After researching I was convinced I had interstitial cystitis or embedded UTI. I cut out caffeine, alcohol and tested anything else acidic etc in my diet. I got to see an NHS urologist recently and they agreed they thought it was IC. He also prescribed me solifenacin tablets which have been amazing. Took a couple of weeks to work and do have some side effects but I can actually live a relatively normal life now and not feel constantly anxious about where a toilet is. So I’m now worried after hearing that a cystocopy can make some people’s symptoms worse? If all the symptoms point towards IC and the tablets are now helping, is there much point in having the cystocopy? I feel like I’ve got to a good level of management with the tablets now and am really anxious to go backwards. I forgot to take the tablets 1 day and I was miserable going to the loo every 15-30 mins and constantly feeling like I needed to go.

Yes, have the cystoscopy, in case there is something going on that can be easily fixed, and look up the low-acid diet.

Sorry - just seen that you're already doing that: well done!

@whyhere Thanks for your reply :) oh really? What could they find that they could easily fix? I’m worried it’ll irritate my bladder more :/

There are all kinds of issues - strictures; inflammation; infection; structural changes. I would definitely have it done. (I have a family member with IC and she found a cystoscopy very helpful, not least because it alleviates the worry that there 'might be something....')

I could have written your post. So sorry you've had these on going issues, I know how miserable it is. I had a cystoscopy 10 days ago and it was less painful than a smear test. The camera was in for less than 1 minute as he took photos. It was a relief that everything looked fine (despite not explaining ongoing utis) so it might be good for peace of mind? It was 2/3 seconds of discomfort, much bettter than I thought!

You can also request to have it done under GA.

@whyhere Ok thanks :) I suppose you’re right, at least it would potentially rule out other things

@applecharlotte12 Thank you for your reply and so sorry you’re going through all these issues as well :( it’s horrible isn’t it! Glad the cystocopy wasn’t that bad. Did you have any after effects? That’s good news that they didn’t find anything but yes, annoying to not have any answers still! Have you been taking d-mannose? Forgot to mention that in my post but I think that has helped (obviously not 100%).

Hey

I had to have a cystoscopy a few years ago. Same symptoms as you but was never prescribed anything useful!
The procedure itself was fine but I have to warn you the first few pees directly afterwards (for me) were excruciatingly painful. Awful! BUT that cleared up and back to baseline pain after a day or so. Definitely worth doing to rule out anything. Im sort of in remission after many years struggle but having a flare as we speak. I believe my symptoms are hormone related for me. I also tried homeopathy and it helped much to my surprise.

@diyisnotmyforte hey thank you for the reply :) that’s good to know that the cystoscopy itself was ok and thanks for the heads up about the pees after! I think I will go for it after everyone’s kind advice on here, I was just anxious to go back to where I was. I’m sorry they never gave you anything that helped and that you’re currently in a flare :( my symptoms do seem to be worse around my period too. Honestly we get all the good stuff as women! I hope your flare goes soon. That’s great if you’re mostly in remission though. I’ll definitely look into homeopathy if they don’t find anything in the cystoscopy, thanks. Was that herbal tablets or anything like acupuncture/ reiki?

Hey @SassyOliveKoala it was just bog standard homeopathy. I used a homeopath and she gave me these little tablets and it works. Although this flare is being a bugger atm. I did try acupuncture and it was no good.