interstitial cystitis

[Mascot68]

Hi all

So lovely to be part of this community I have had lots of very good advice over the years !

was just wondering does anyone suffer from this with IBS as it’s very difficult to decipher whether you have a kidney infection or this interstitial cystitis ! I have had several attacks over the last few years and notice they ate getting even more painful !

any thoughts please

[Andann]

Have you had medical advice? I assume you are getting medication. When you say the attacks are getting more painful that seems worrying.

I am only going by my experience of many many utis which sometimes seemed more like interstitial cystitis and kidney infections in the dead of night and which eventually were cured after advice from a specialist (vaginal cream which acts as a barrier to the entire genital/urinary area.)

[Mascot68 in reply to Andann]

Thanks for your reply ,I think I will contact my doctor

[Gardener in reply to Andann]

Hi, I am interested in your reply about the cream to act as a barrier. I am living on low dose antibiotic for recurrent UCI’s, which are not beneficial for my IBS. Can you tell me the name of the cream you use and whether it is available over the counter please. Thank you.

[Andann in reply to Gardener]

Hi, I am in New Zealand. The cream is Ovestin...ingredients are oestriol, chlorhexidine hydrochloride. Prescription only. I believe it restores the hormonal balance as it is useful in the early stages of thrush as well. I used it as a preventative every 2-4 days.

[Mascot68 in reply to Andann]

Thank you

[Andann in reply to Gardener]

Also, later in life when I had uti symptoms but urine tests did not show infection another specialist recommended D-mannose which worked. zoompharmacy.co.nz/shop/uro...

[Mrs-Gee in reply to Andann]

I came down with a uti when I contracted covid in 2022. Couldn’t get it shifted - 8 courses of 3 different antibiotics and ended up having a camera in bladder and a camera in uterus with removal of a fibroid and biopsy…I started taking d mannose with last course of antibiotics and it shifted. Had it run its course or did the d mannose help? But now take it if I feel at all iffy and I have not had a reoccurrence in over a year so feeling zen about it all

I also increased intake of live yoghurt, kefir and developed a taste for kombucha. I took the probiotic Aflorex for 3 months to counter the effects of the antibiotics.

[Mascot68 in reply to Mrs-Gee]

Thanks so much , appreciate all the information , do you need a script for d mannose or can you buy it over the counter ?

[Andann in reply to Mascot68]

You can buy D-mannose otc., larger chemists or online.

[Mascot68 in reply to Andann]

Thanks so much

[Mascot68 in reply to Andann]

Thanks so much

[BTC34]

Hi there. Yes I have had both IC and IBS diagnosed. According to one research project those with IC are up to 100 times more likely to have some form of inflammatory bowel issue. I would always get a urine check if you have any new kidney pain symptoms. Whilst IC can give you neurological kidney pain you can still get an infection. I found the book Along the Healing Path by Catherine Simone an excellent source of support for IC and how to manage symptoms. It raises the issue of managing it with IBS. I used some of her tips with positive results.

[Mascot68 in reply to BTC34]

Thank you , I will look up that book

[Mascot68]

thanks for your reply , do you have pain all over your abdomen with IC ?

[Lt63]

I have had IC for many years, I had a Medtronic device for the IC from my urologist that has been a miracle for . I would be in a lot of pain if it wasn’t for this device I’ve had ICE for like 20 years probably longer. I would ask my urologist about this device .I’ve developed IBS about five years ago now I’m dealing with that

[Mascot68]

thanks so much for your reply

[LFHell]

I read an interesting study the other week when preparing for my gastro app, that IC can be triggered by SIBO bacteria. And that some cases of IC can be treated with SIBO antiboitics rivafixamin successfully in the study. You should send it to your doctor and say "even if the guidelines dont allow you to treat it this way just now, perhaps the NHS could consider doing a study on this?"!

researchgate.net/profile/Le...