UK people with Interstitial Cystitis

Posted , 7 users are following.

Hello , i am 21 years of age with Interstitial cystitis and i am very much struggling to find any source of information that is related to the UK, all tablets and other supplements i have heard of are not available in the UK which is so frustrating. for example i really want to try elmiron but you cant get in the UK!.

Has anyone got any advice for me?

I suffer with strong pain and burning sensation the worse , then trying to empty my bladder is a nightmare.

i am currently taking Marshmallow root and bicarbonate of soda, i have previously tried atarax, ceflexen ,slipperly elm , cefradine and i am allergic to most painkillers such as ibuprofen and aspirin.

Any UK advice would be helpful please


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4 Replies

  • Posted

    Hi holly,

    I have IC and I have been prescribed amitrpilyne I believe this to be the first thing an IC patient is offered as it helps with the pain

    Let me know how you get on


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  • Posted

    Hi holly, try reading a book by Phillip weeks called painful bladder syndrome. His an English author and lists a lot of supplements in there and also a holistic approach to helping with symptoms, mostly nutrition. It's definitely worth a read but it's hard to do.... I've just started but I think anything is worth being pain and symptom free!

    hope that helps chick


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  • Posted

    Hi Holly I too suffer from IC and have for over 40 years..going from regular cystitis to rules and sometimes ruins my life.We are supposed to drink lots of water but due to a heart condition I must LIMIT fluid..antibiotics do help with me strangely enough! Cant take ametryptaline due to HF...only people who have this condition really understand x
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    • Posted

      hi to holly and sandra, l think elmiron is on prescription, and amitriptylene  cimetidene common first things prescribed. l,m a long termer as well Sandra, 32yrs for me, initially also having bouts of bacteria cystitus. Starting with amitrip and cimet, but had many years before diagnosis, years of torment, physical and mental. Diagnosis, knowledge, suppert and meds did help. l also added l arginine to med regime, and several years ago one kefalexin a day, as prescribed by urologist, research showing women did improve with one a day, and didnt with placebo,s, not sure why think it might be deep seated bacteria, but it has kept my ic stable and moderate over many years, but in recent times it has been problematic again, not as bad as it was in early years, but bad enough.  l dont know if its with getting older when things often do get worse, or increased allergens in envoiirament as my allergic rhinitus asthma also worse, plus know a few other olders whose chronic immune allergy problems worse in last year or so, after managing well enough for years. l so agree youve to experience it to know how much it affects, l think most gps, and items wrote about ic do not fully tell how bad and in how many ways it can affect. Emphasis on frequnecy and acknowledgement of some pelvic pain, far more to it than that, at its worst devastating physically and mentally, due to nervous system passing through the bladder.lve had cancer, chemo radiotherapy, 4 major ops, minor ones, gall bladder pain, but nothing came near, for me at least, to severe ic, maybe if hunners ulcer present.  But treatments are improving, as with earlier diagnosis.  Good luck to all with it.
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