Bladder instillation experiences anyone??

[Cocothebear]

I’m being offered these by my local hospital for suspected IC and just wanted to see if anyone has had positive experiences with these?

I’ve had several bladder pain for the past 4 years and have pretty much given up on my life.

Severe*

Hi,
I know this was a wee while ago but I’m just wondering how you got on with the instillations? I too am in a similar boat to you and just wondered if there was any light at the end of the tunnel for you.

Hi, following as i am in the same situation as well, i will have my first instillation next week, i am worried and also wonder if this is just a temporary solution/relief or an actual treatment that will sort the problem out for good after weekly 6 courses. Thanks.

I had these privately and they made a huge difference to me. My whole life changed!

I haven’t had them and was under Professor Malone Lee at the LUTS clinic and he was very against them, said they could make it worse. But anecdotally I certainly know a few people they’ve helped.

Can you get referred to LUTs?

I also had these, not privately but on the NHS, and they made absolutely no difference so I think it can really vary from person to person

Hi, thanks for your response, i appreciate it. How many instillations did you get and did they permanently fix the problem? I am worrying that i will go through all the invasive and painful experiences for just some temporary relief. Would you mind telling me more about your experience? Thank you.

Hey all, just found this in my old threads I’m sorry I missed your responses. Just an update, ialuril instills didn’t work for me so they changed me to Parsons Cocktail instills and they started working after about 6 weeks, 9 months in now and not symptom free but so much better. I’m able to lead a pretty normal life and am eating and drinking most things now. I was under Malone Lee and was told not to have these… I wasted a year on his drugs and they made me SO ill and left as my bladder was the worst it had ever been. I wish I’d have listened to the NHS first as for me this was the right choice

Hi @Cocothebear, thanks for giving your update. How many instillations of Ialuril did you have? I am currently on session 5 but not finding any relief as yet - so disappointed. What happened after that - did your nurse just put you onto the next set of instillations or did you have to return to urologist? I am going to ask about alternatives when I’m back in two weeks.

Hi, i had my 6th instillation on Wednesday and they didnt work, i am still in agony. They will now do it once a month but i am hopeless. How are you now, what will you be trying next? I am totally lost and dont know how i can live like this. Thanks.

Hi, how are you now, are you healed completely? I had 6 course of hyacyst instillations and no improvement yet, still in agony. Thanks.

I have had diagnosed interstitial cystitis since 2013. Installations helped a bit, but Botox was the best. Had it three times and each time I was pain free for approximately 6 months. However, the last Botox injection froze the bladder muscles a bit too much and I had to wear a catheter and urine bag for 10 days.

Afterwards, I was too scared to try Botox and tried amitriptyline, and it worked! I am rarely in pain now. I take 25mg each night, going up to 75mg when I’ve had pain.