Interstitial cystitis - bladder installations

[Amimissingsomethinghere]

Has anyone had bladder installations? I had my second on Friday and I feel like it’s making it worse?? I’m seeing one of the top professors to treat this condition (Vik Khullar) but It feels worse and I’m panicking and I’m slightly at my wits end......
I’ve tried acupuncture long term antis .... you name it... it’s been nearly two years and I’m so fed up.

[Milliy]

How horrible for you. I know women who have tried the diet approach and it has helped.

[Amimissingsomethinghere]

Thanks Milliy. Anyone else? There must be other women out there with this problem? Or women that have had bladder instillations?

[JinglingHellsbells]

I had 1 instillation and never again. My urethra was so painful at the time anyway and the instil process really hurt. I decided not to have more.
The most effective thing for me has been diet- google the IC Diet- and as I got older, HRT, including vaginal estrogen, as the estrogen can help thicken the bladder lining.
I know how horrible this all is and hope you get some relief. If you have not adapted your diet (including drinks) give it a go.

[Amimissingsomethinghere]

Thanks jingling. He did give me estrogen cream to use directly post birth but that’s it. My urethra is not sore thankfully it’s just an extremely sensitive bladder and frequency (which is slowly driving me MAD). What diet changes did you find helped? I try to avoid things that they claim to be triggers (alcohol acidic stuff tomatoes etc) but I haven’t seen to have found a correlation between the two xxx

[JinglingHellsbells]

I was told that it can take up to 6 instils to feel the difference. Do you know there is a bladder support group for this? Not sure of the name now but you can google it. Used to be called the COB Foundation.
There are a few online sites and support forums, some in the UK others in the US.

www.ichelp.org/living-with-ic/interstitial-cystitis-and-diet/foods-to-avoid/

[Julcol]

I had 12 in total it was worse for a couple of days after each one, and I was glad when they finished, however it has been well worth it , I crippling pain before, so pleased I stuck with it x

[Rainbow2116]

@Amimissingsomethinghere did you manage to see someone at Malone’s clinic? Im having the same problems 😭😭