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does anyone else have interstitial cystitis?

(14 Posts)
LoveAndSqualor Wed 27-Oct-10 17:36:31

Wondering if anyone can help ... About two weeks ago, found I was needing to pee ALL the time. I went to the doctor's, thinking I had cystitis (though it felt different: no burning, just constant feeling of needing the loo), got antibiotics. They didn't help, so I went back on Monday, and he tested for a UTI, but all clear. He thought I might possibly have pelvic inflammatory disease (though highly unlikely, as no real chance of an STD) and stuck me on killer antibiotics for that. I've been taking them, but no better at all - constantly feeling like I need to pee, no relief when I do, general unomfortableness ... ugh. The other thing he mentioned was interstitial cystitis, and looking at the symptoms, it does seem a very close fit sad. I've also therefore cut out caffeine, alcohol, fruit juice and so on for a couple of days, but again no effect yet.

Does anyone else have it? How do you manage it? It's driving me NUTS at the moment and making me feel really miserable ...

ilovehens Wed 27-Oct-10 17:49:19

You should get back to your doctor and ask for different antibiotics. I had all your symptoms and my msu came back clear, but I still had an infection.

My symptoms returned a few weeks later, but I started drinking cranberry juice like it was going out of fashion and also bought some cranberry powder sachets from the health food store and that managed to see it off.

You can buy sodium citrate powder from the chemists for cystitis and that's good as well, but won't get rid of any infection.

Which antibiotics were you given and how long was the course?

LoveAndSqualor Wed 27-Oct-10 18:15:05

Hey ilovehens, thanks for getting back to me. Can't remember what the first antibiotics were, but I'm now on two lots, in very high doses (apparently they blast you when they think you might have PID, as it can cause infertility) and these aren't having any effect ... which is what's making me think it might by interstitial cystitis, rather than bacterial ...

ilovehens Wed 27-Oct-10 18:35:49

Trimethoprim? was that one of them?

Has your doc sent an msu away or just dipped your urine whilst at the surgery?

hobnobsaremyfave Wed 27-Oct-10 22:22:03

Love and Squalor you have my every sympathy at the moment . I have just finished 3 lots of antibiotics after developing similar symptoms to yours. My GP now thinks I may have something called an unstable or irritable bladder and has started me on medication called oxybutin. I have also done the cutting out alcohol/caffeine etc. I am currently awaiting an appointment with an urologist but the symptoms at their worst are driving me MAD! Hope you get yours sorted.
BTW there is a website with helpful advice if you google unstable bladder I think you will find it.

purplepeony Wed 27-Oct-10 22:36:39

You need to join this forum ( might be UK at end of that)

loads of help and message boards.

BeenBeta Wed 27-Oct-10 23:06:19

LoveandSqualor - I have suffered from interstial cystitis for many years and eventually self diagnosed and self treated with a little support from a specialist who really understood the condition.

After going through many painful, distressing, humiliating and unecessary treatments (all of those listed by posters above and many more) and losing all hope I went to see the team at the John Radcliffe hospital in Oxford who are studying this condition.

I was told there is no cure but it is related in some way to certain trigger foods AND is a kind of autoimmune condition where the body attacks the bladder will and cause inflamation. I had also noted over many years that the bladder pain was often linked to IBS symptoms and muscular/joint pain when the attacks were severe.

I found tomato was a serious trigger food for me. I also found I was a coeliac a few years later and cutting out all gluten containing foods and dairy has dramatically improved my condition.

For many years I had told doctors that I knew it was related to what I ate because the symptoms disappeared entirely if I fasted 24 hours and just drank water but they just shrugged their shoudlers. It was so nice to eventually find a team of doctors who agreed with what I said and understood how I felt.

It ruined my life for quite a long time but by changing my diet, changing to working from home and occassionally wearing incontinence pants I find life is now quite pleasant again. It does not feature in my life hardly at all now after dominating it for years.

fourkids Wed 27-Oct-10 23:59:02

BeenBeta, is the link between interstitial cystitis symptoms and IBS symptoms a recognised one?

Thingiebob Thu 28-Oct-10 00:12:22

I have an auto immune condition that causes inflammation in my body and I regularly get bladder pain which I believe is related. I go to the doctors and all my urine tests come back clear yet it feels just like I have a bladder infection or cystitis. Interstitial cystitis or 'sensitive bladder' are two possible diagnoses.

The only thing that works for me is to use the sodium citrate powders as this seems to ease the pain and take Ibuprofen and paracetamol together every four hours otherwise it makes me so miserable. Gradually over time it goes away but I feel for you as I know how unpleasant it can be.

BeenBeta Thu 28-Oct-10 08:02:03

fourkids - yes I have read various research papers suggestng a link. A quick Google came up with this short summary to a research paper mentionng chronic pelvic pain in women and IBS and interstitial cystitis.

A major problem with this conditon is that it has such diverse symptoms and causes but the debilitating outcome and impact on life is undoubted.

LoveAndSqualor Thu 28-Oct-10 12:18:49

Hey everyone, thanks SO much for replying. Had a terrible long-dark-night with it last night, so uncomfortable and miserable. This morning, though, I've made an appt with a nutritionist who says she has some success in treating the condition.

Interesting about the IBS link; I've had that in the past, though been symptom-free for a while. I'm not in pain as such - more just feeling constantly as if I need to pee, and tingly and achey in the general area. Argh.

BeenBeta, good grief - you had to switch to working from home? Lordy, that's not really an option for me (single parent to DS, though have wonderful and supportive DP).

Also - sex. Is this a problem with IC? Any advice very gratefully received ...

BeenBeta Thu 28-Oct-10 13:47:20

Yes sex with IC can be a major problem for women in particular and I have to say it aint fun for a bloke at times.

As link this suggests it is especially painful in the morning and like trying to pee razor blades. I used to say it was like peeing acid.

LoveAndSqualor Thu 28-Oct-10 14:15:26

Lordy - sounds deeply unfun. Thanks for the link. I may try to make an appt at that clinic, if all else fails ...

LadyCharlane Sat 10-Feb-18 04:26:37

I notice it’s been a while since anything was posted- but - I’ve had IC for about 20 yrs. I’ve done it all. Was bedridden 2 yrs but while I struggle, I’ve learned to live with it and now travel all round the world. Remember it’s not a bladder infection. It’s a disease- antibiotic won’t help and may make you sick if you keep taking it. Your tissues aren’t growing naturally- Elmiron may help that (Med), best is diet and pelvic phy. Therapy. But if you’re nt feeling pain like a cross of kidney stones while giving birth, it’s not ic.

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