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[LittleSole]

Hi,

I was diagnosed with Interstitial Cystitis 16 years ago and have been having Cystistat Instillations; with some success at reducing symptoms (pain and nocturia), but it now no long helps.

I would be pleased to hear from anyone who is having a different treatment and hear how successful it has been? Especially if anyone has had sacral nerve stimulation.

LittleSole

[Songbird]

Hello LittleSole
I'm sure someone will be along soon who will be able to pass comment on the sacral nerve stimulation - can't help with that but can say that, after having suffered from interstitial cystitis with periodic UTI for years, it was only when a GP identified vaginal atrophy and treated me for that (treatment for life I suspect) I can say that I have had no flare ups at all.

[Wrensong]

Hello LittleSole &    Sorry to know you are an IC sufferer, as it's a really miserable condition to live with.  Instillations were on the cards for me too, but I find that using both systemic & topical HRT now keeps flares to a minimum, providing my oestrogen dose is high enough.  Sorry, no experience of sacral nerve stimulation for IC, but hopefully someone who has will be along to help.
Wx

[Katejo]

Hello LittleSole
I'm sure someone will be along soon who will be able to pass comment on the sacral nerve stimulation - can't help with that but can say that, after having suffered from interstitial cystitis with periodic UTI for years, it was only when a GP identified vaginal atrophy and treated me for that (treatment for life I suspect) I can say that I have had no flare ups at all.

  Seversl times I have heard interstitial cystitis described as a lazy diagnosis by a doctor who can't be bothered to investigate properly. My boots of cystitis improved considerably once I was on Vagifem and later Evorel Conti.

[Lynne888]

I was diagnosed with IC when I was around 40, long before I hit menopause. Vesicare kept it in check for years but when I was in my 50’s I had flair after flair and at one point sat on the loo for about 4 hours because peeing was so frequent. It was a new GP that diagnosed VA and vagifem transformed my life. Honestly I felt
like a new woman. I’ve got problems again now. I initially thought was VA and then assumed it was iC again but nothing is calming the constant urination.

[Joaniepat]

Have you looked into embedded/chronic UTI? I took ABs (Macrobid) along with Hiprex for about a year under Prof Malone Lee's protocol. I am OK now, although will still be taking Hiprex for a while yet. I also use Vagifem 5 a week, Ovestin externally every other day, and am on systemic oestrogen.
JP x

[CLKD]