Interstitial cystitis - in despair - any positive stories?

[ToLiveInPeace]

I've had problems peeing for almost seven weeks and steadily increasing pain more recently. My GP has referred me for tests but says it's probably interstitial cystitis. She wasn't very positive about the outlook and Dr Google definitely isn't :( It's seriously affecting my life already but seems to be getting worse. It's started while I'm on long-term sick leave for stress, if that's relevant. Ibuprofen was recommended but does nothing.

I don't need any more horror stories about the long-term outlook, but I read that some women do recover and drugs can help. Has anyone here ever recovered or found effective ways to cope? (If you have a terrible time with this, I'm sorry... But please don't give me more anxiety just now).

OP I had a terrible time a few years ago with almost constant low level cystitis that ended with me in A&E on a supposedly romantic weekend away.

I don't know if it was IC but a combination of Azo tablets (buy from Amazon), D Manoose and UVA Ursi (also both from Amazon) I managed to get rid of it.

Took three weeks to feel better and if I feel the burn coming on I take Azo and D Manosse straightaway and it stops it in its tracks.

I do sympathise because its bloody awful and I was really frightened it was IC too.

I'm sure other posters will be along to help too.

Thank you so much. I will look into those tablets etc. I apparently had an infection at the start but all clear now. Absolutely zero chance of any romance around here, that's for certain!

Interesting thing is - if anyone can comment on this - I have urinary retention rather than urgency. Does that suggest IC or not? The GP seemed fairly certain it is but it's less clear from what I've read.

It's possible its long-term thrush. A private gynae may be worth seeing. I suffered for ages then got prescribed weekly flucanazole capsules for about 10 weeks, which did the trick, along with a low-sugar diet. Has never come back, thank god.

Azo is worth its weight in gold - I suffered horrendously in my 20s before I knew this stuff existed. It’s not a cure, but stops the pain in its tracks.

Thanks so much for your replies.

@ShakeaHettyFeather - I'm almost certain it's not thrush... Because I've just had two courses of flucanazole and four of Canestan to solve that particular problem as well .

@JeremyIronsBenFolds - thanks for this - I'm ordering some this morning, so did you have ordinary cystitis that kept recurring or this horrible interstitial variety?

I’m a physio and I work frequently with people suffering from IC (or bladder pain syndrome) as we now call it. First up, urine dipstick testing is very inaccurate so sometimes this problem is caused by chronic low level infection which is undetectable. The infection resides in the bladder wall, a short course of antibiotics improves it but as the bladder lining sheds (a normal process) the infection recurs. Longer term antibiotics can help here.
Frequently, IC is not infection based and other factors such as pelvic floor muscle tension, stress etc contribute. This sounds like it might be a problem for you. Often the pelvic floor muscles become tight and overactive and when I treat clients this is what we work on (look up the work of jilly bond on YouTube).
Hope this helps and you feel better soon.

I don’t know if it was interstitial, more just a recurring infection that didn’t get beaten properly - I became resistant to Trimethoprim but they hadn’t realised. I had all sorts of unpleasant hospital investigations and as a last resort they prescribed me a very strong antibiotic, which actually cleared it up! Only took eight years...

Have had IC since 2012 and have been in 'remission' for a few years now thankfully after eventually finding a treatment that works. It was a long process and I nearly gave up hope but it is so much better now. Yes I still have flares usually caused by hormones, food triggers or stress but they are much less now. Feel free to PM if need to talk.

I have repeated episodes of retention, no diagnosis - had two cystoscopies, two dilations, hydrodistention, urethral pressure profiling, ultrasounds, MRI etc etc ... you have my biggest sympathy , bladder problems really are shit .

The only thing that has made any jot of difference to my long term issues with this (been on daily antibiotics since I was 14, now 40) is Ovestin oestrogen cream used internally and externally every other day (you’re only officially supposed to use it twice a week but my specialist said this was okay) and Replens used on the days in between. And HRT. I take oestrogel and utrogestan. I have a lot of autoimmune conditions and I think the whole thing was just adding to it all. I also suffer recurrent thrush and it seems to make it all worse. The cream really helps. Something to consider as well is that if you are very sore and dry down there you’ll struggle to absorb the medicine from a canestan pessary (mine just literally fall out whole!) so I always use the internal cream tube now.

I was diagnosed with IC last year, after numerous episodes of blood in urine and severe pain. I had a TURBT to rule out bladder cancer, as Urologist found red patches on bladder wall. Thankfully, nothing sinister was found, but Urologist said bladder wall was v red /inflamed and diagnosed IC. He has suggested that I get a series of 'Instillations ' which is basically medicine put directly into bladder, via catheter, over course of 6 weeks. It's done as an out patient in hospital, and my consultant said it has great effect of easing bladder inflammation. I have not started yet , as Coronavirus has stopped all these outpatient procedures, but I hope to start early next year. Has your doctor referred you to a Urologist, op, as they should have some options to ease symptoms? My sympathy goes out to you, op, as it is a horrible condition to be living with.

I recovered or am in remission so yes it does happen

@ToLiveInPeace How old are you?
I had all the symptoms of IC and nothing even touched the pain.
I was suicidal.
Saw a different GP and she suggested Vagifem ( HRT). I thought she was mad as I had no signs of menopause at all. ( in my 40s)
It did the trick in 2 weeks.
Bloody marvellous!

@Glitterbiscuits almost exact same situation here.

I seem to always get cystitis at the end of my period, I can usually get rid of symptoms by downing gallons of water and potassium citrate but sometimes end up needing antibiotics. Had several very bad utis that tracked to kidneys in my 20s but nothing then until I hit my 40s three years ago. Does anyone else get this? I’m unsure whether it’s IC or not.

Nitrofuratoin daily for about 6 months got rid of mine. I think it was an infection embedded in the bladder wall.

I would second d-mannose. I have problems with let down of my bladder and have to self catheterise when this happens.
D mannose and homeopathic medicine (i was sceptical but it works)

Hi, same situation here, how are you now, did the instillations help, are they easy as im worried? How long did it take for you to recover?
Thanks