Help! Have I got interstital cystits?

[hellsbelles]

I'm driving myself crazy over this one. I have a constant urge to urinate...no pain but a feeling that I have to go all the time (and a sort of pressure).

This has been going on for 4 weeks now...dr has given me 4 types of antibiotics despite all urine tests coming back clear. He has also done an ultrasound to check my kidneys and ovaries...all fine. He couldn't check my bladder as it wasn't full enough.

He's said that if this dose of AB's doesn't work then he will do a bladder distention under general anaesthetic...which sounds horrific. Has anyone any experience of IC? I have no stabbing pains or problems with sleep which makes me hope it might just be the curable oversensitive bladder. This has just started from nothing and I'm really worried.

Hi everyone,

I had an ultrasound on Monday, sonographer said she couldn't see any reason for recurrent UTIs. Symptoms of a UTI were starting to come back on Monday, I've been trying to ignore it and drink lots of water. Admitted defeat today and went to see GP.

Now every other time the dipstick has been positive for bloods/leucocytes but nothing has grown in the lab. Today there wasn't even anything on the dipstick. He's prescribed abx though as I have a constant burning sensation, constantly feel that I need to go and leaking small amounts at times. Constant tummy/bladder pain.

I don't understand how if it isn't a bacterial infection then how come on all other occassions the abx have made all the symptoms clear up even if they do come back a few weeks later?

Anyway I'm also going to order some of that waterfall d'mannose stuff. I'm totally miserable with it. Sitting here now feeling like I'm desperate to go but I only went 20 minutes ago.

Which antibiotics has he given you?

Are you having any kidney pain? Nausea, headache? If you are, then the infection is coming from the kidney and you may need different antibiotics. Just because nothing has been grown in the lab doesn't mean that there's no infection there.

hells - leaking guts. Now that is interesting. I used to say to doctors that I thought food was crossing the lining of my gut and causing some of my symptoms. They ignored me but I still think its true and caues some kind of adverse immune response.

I've had 6 Prerelief tablets today and feeling good. I will know by tomorrow morning if they worked. After chili and red wine I normally dont sleep well with stomach acid and then wake up at 3.00 am with my bladder on fire.

Fingers and legs crossed.

I've figured out what's wrong. The nitro isn't effective against infections that involve the kidneys. The uva ursi was effective because it turns into a substance in the body that's effective against kidney infection. Just not in the right concentrations to get rid of the infection. I need a different antibiotic, possibly ciprofloxacin Will phone the gp in the morning and try to get the right help. She was aware that the infection had gone onto the kidneys in November.

I have got some kidney pain but only on one side. He didn't take my temp but I don't feel hot/unwell. No nausea.

He's given me trimethropin, I had 2 courses of that back in Nov. I've also had a course of amoxycillin and one of norfloxacin as well as another which I can't remember the name of.

ilove - I do hope your GP sorts this out. It's interesting that you are having a lot of carbs - Deborah said to cut out all carbs to me....except brown rice. I haven't done it properly yet as I'm not on her proper diet until next Friday but I'm only have wholemeal toast in the morning and also sticking with brown rice.

Viva - fingers crossed the dmannose makes a difference.

Hey there, so sorry so many are having bad times.

ilmh - really glad you feel you've pinned it down. I know JUST how you feel- having gone through every manner of illness, NOTHING comes close to that constant need to go to the loo. It takes over your whole head. Just awful. Only thing I can say in consolation is that that's precisely how I felt in October, thought I was basically staring down the barrel of feeling like that forever, and really don't have it now. Not wholly symptom-free, still have some residual bladder pain, but a million miles better than I was. Even if you don't pin down an effective antibiotic (though it does sound as if bacteria is the problem for you) there are options. From what I've read, I'd think the first might be longterm antibiotic therapy. Take a look at the work of this guy: www.moonstar.com/~icickay/fugazzotto.html

he's had lots of success in the US. (ps where are you in the north-east, out of nosey interest? I'm a north-easterner myself (though exiled in London these days!))

Beta, both Deborah and my acupuncture woman have said that leaky gut can be a cause of IC. It can also be treated, seemingly, though it's a long-term thing. Yeast overgrowth can cause it, I gather, when the yeast penetrates and compromises the gut wall. Maybe worth looking into? Glad the prelief is doing its job!!

And Viva, jeez, so sorry you're having a crappy time too. D-mannose sounds like it'd be a really good bet. You can order it from a site called Sweet Cures, based in York. Really really hope it helps. If not, though, there are other options, and we're all here to make sure you find the right one.

ps ilmh - just seen what you said about carbs - cutting them out did seem to help me turn the corner - though obviously everyone's different. Also, I know I've said this earlier on, but I recommend Catherine M Simone's books if you're feeling really crappy - she sorted herself out from a really terrible, terrible state - bleeding so much from her bladder that the urologist couldn't tell whether the blood was coming from there or her uterus. It is possible to get over this, not matter what it is or what the cause x

o.k...what L&S said ...plus ilove it's worth you steering clear of all fruit (and tomatoes, or are they a fruit!?) for a bit - even if it's not IC (which we all hope it isn't) - they can be bladder irritants. And if you can bear to cut back on the refined carbs at least that may provide some respite.

I'm sort of viewing this as I may or may not have IC but I do for sure have some sort of irritation in my bladder...so I'm learning all about what irritates it and trying to cut that out. Also as L&S wisely told me a while back - all the stressing makes it 100 x worse. So I've stopped looking at all the scary stories and I'm now just concentrating on researching ideas for soothing my poor bladder!

How is everyone today? In preparation for the fact I'll soon be on a restrictive diet...I had a small glass of wine last night -to seemingly little effect! Hurrah.

Not feeling too bad.

Had a couple of Prerelief followed by leeks, cream, chicken and a big glass of red wine followed by orange cake and triple espresso for lunch.

Normally would be up all night with that lot. We shall see.

[guinea pig emoticon]

You are putting them to the ultimate test! So last night wasn't too bad despite booze, tomatoes and chilli?

Well I'm feeling better today, abx have kicked in I think. Beta and Hells - glad you both seem OK even after wine! I think I drink too much diet coke and am going to have to try and cut back, have a serious addiction though.

Viva - diet coke is the worst thing ever if you have a delicate bladder...please try and kick the habit. Fabulous news that the AB's have kicked in!

Well I've only had 2 cans today and believe me thats a serious cut down! I've been trying to stop drinking it for over 10 years - I used to drink 2ltrs a day.

Hi everyone

I've been started on Cephalexin 500mg three times a day for a week. GP said I'd have to go for an internal examination (for prolapse) and a scan (for kidney state) if things don't improve

My back is hurting and dh said one side of it was hotter than the other, it was also very tender when I got him to squeeze in the region of the kidneys.

Just have to see what happens I suppose.

Ilove - you poor thing...that sounds very hard going. I guess you'll know by t/m night if these are going to help. I do hope you get some relief soon!

Viva - wow that is a lot! Deborah (the herbalist woman) went on and on about the horrors of diet drink (even though I rarely drink it)...she said it can cause ulcerative colitis as well as IC...not sure how true that is but I don't want to test the theory.

Beta - how are you getting on with day two of prelief?

Pretty good. I hope it isn't a placebo effect.

The night time is the real indicator. I have a 20 day supply and next weekend we have guests so that is the real tester.

Glad to hear the prelief is showing signs of being effective

hellsbelles - fizzy drinks also leach calcium from the bones due to what's in them

Hi everyone

V interested to hear how the Prelief is working. I had a glass of wine tonight - daring! So far doesn't seem to have made an impact and this week has actually been pretty good so maybe things are calming down.

If it starts up again I think I need to decide whether to try the 6 week course of antibiotics again or start to have some more investigations.

Thing is I dont want to end up living as if I have IC if I in fact dont. If it actually is an infection in the bladder wall that could be wiped out with some serious antibiotics it would be such a shame to limit myself for months or years so as to not cause further irritation but without ever really getting rid of the problem.

But I dont think I understand how you know if you actually DO have IC. All the urine tests have come back negative for infection.

Feeling a bit confused tonight as to how I should go forward.

kitslano - I'm at exactly the same point as you. I am feeling a lot better (just occasionally blip days), I risked a small glass of wine last night with no ill effect.

Originally I had no bacterial growth but 4 courses of AB's in a month...and I keep thinking that maybe the last batch did work (even though no bacteria ) and any left over feeling is just sensitivity from the attack of AB's!

But it was all so scary and weird when it was at it's worst (and I still am much more frequent than 'normal' but it's managable) so my feeling is I need to go down the alternative route just to get myself back on track.

I'm avoiding the invasive testing for IC right now as I just think it would make whatever this is worse. I will only do that if I get lots of pain and can't sort it out any other way.

I wonder if I've just been given some sort of warning sign to get it sorted if that makes sense? I can do a restrictive diet for a bit...it's probably going to give my system a real sort out.

kitslano! sorry me again...there is a different urine test they can do called the broth culture...might be worth you finding out more about that. I'll put on some links t/m (too knackered to google tonight)...but I've read in quite a few places that people that have all the symptoms of IC can sometimes get a result in a broth culture when all other urine tests have come back negative...and they can then treat the problem with ABs!

Thanks hells - I have heard about this broth culture but don't know much about it. I'll look into it.

When I did have the cystoscopy and bladder distension last year they found evidence of bacteria deep in the bladder wall - would this NOT be IC then I am thinking? Or is IC sometimes caused by bacteria in the bladder wall? It's somewhat confusing.

With regards to having the cystoscopy and bladder distension - it wasn't too bad and interestingly it seems bladder distension can actually help IC symptoms as it damages the nerve receptor for a period of time. But I understand you not wanting to go that route so early - by the time I did it I had been having the problems for almost 6 months.

My symptoms were/are now exactly the same as yours hells - frequency, pressure but no pain. Evenings worse, days could be almost normal.

Hope you have a good day

Kitslano - I can't remember where you are based but I'm sure L&S said that Deborah Grant at the Hale Clinic could do the broth culture test (L&S is that right).

here's a brief explanation of what it's checking for broth culture q&a. I'll look for some proper info later.

I'm still feeling much much better...and still dreading when I'm going to have to go on the totally restrictive diet. When this was feeling so awful it was easy to think 'I'll do anything to make this stop' but now it's managable it's easy to get a bit lax! But I will see what Deborah has to say - actually on that note L&S are you around? I need to PM you to ask you something about Deborah.

I hope the reason it's so quiet on here today is because everyone is having 'good' days and is out and about and enjoying themselves!

Hey all, sorry for absence - was off up in Birmingham doing a thing for work yesterday and have been hanging out with DP today.

Am cautiously thrilled at all the wine drinking! I too attempted the formerly forbidden today: sex! Deed done at about 3pm (DS at his father's ). So far to no ill-effects! Though am a little nervous. Did all the water-drinking, washing, peeing etc. We'll see ... I think if there are after effects, I'll probably feel them tomorrow. Planning a quiet eve of sofa and TV to mitigate adventurousness .

Otherwise, have been good: today great, yesterday had some bladder pain but not awful. Actually realised the two days this week I've had pain, it's been after eating something not on deborah's list: roasted/salted nuts! Had reasoned that given that I am allowed to eat nuts, and salt, this rule was ridiculous . Howeever, given that I'm adhering to the rest of it, maybe I should be consistent

hmmn - I'm not actually sure if Deborah does broth cultures, but could ask?