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Original poster

Help! Have I got interstital cystits?

554 replies

hellsbelles · 10/02/2011 21:39

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.

OP posts:
Original poster
hellsbelles · 05/03/2011 18:36

hurrah L&S! legs crossed (!) that it's all fine t/m.

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LoveAndSqualor · 05/03/2011 18:55

just read back properly - ilove, SO sorry you're having a shit time. Any sign that the ABs are kicking in?

hells - pm at will!

viva - GREAT you're having a better day. I was a big diet coke drinker too. It is supposed to be battery acid for the bladder, I gather. Why is it always the nice stuff?!

ilovemyhens · 05/03/2011 19:12

Hi there everyone Smile

Feeling very tired, but the antibiotics seem to be helping. I'm scared to get excited because the nitro helped initially as well.

I'm just trying to drink lots and not think about it.

Hope you are all feeling well.

BeenBeta · 05/03/2011 19:44

kitsilano - when I had the bladder distension thing done aboout 8 years ago they told me that they looked for the bladder wall bleeding through as a kind of partial diagnosis of IC.

In fact I had a urine test (for an unrelated reason) done a few months back and they detected a lot of blood in the urine. It was done early in the morning and I had had a bad night. My bladder was hurting and it was clear the bladder wall was basically bleeding with the irritation.

Not sure, but the bacteria in the bladder wall you have might be therefore be because it has become infected after repeated and continuous irritation of the epithelieal cells. In other words the bacteria might be a by product of IC.

ilovemyhens · 05/03/2011 22:17

Oh, heck. I've just done a self exam and I think I have a uterine prolapse Sad That might explain the recent problems Sad

Bloody nora, what's the treatment for that? Surgery? Hmm

Will have to go back to the gp on Monday. It might explain why things seem to get worse over the course of the day.

Original poster
hellsbelles · 05/03/2011 22:25

ilovemyhens...no wonder you've been feeling so awful. I am pretty sure they can treat that - I believe there are all sorts of treatments - if it's minor then sometimes exercise and if it's more serious then surgery...but it's fixable. I hope your GP gives you reassurance but at least you'll be able to start drinking wine and tea to your hearts content!

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ilovemyhens · 05/03/2011 22:36
Confused

Eee, I am so sick. It's one thing after another.

I wonder what the waiting list for treatment is. I was hoping to get the kids out for some day trips once the weather gets better.

BeenBeta · 06/03/2011 08:14

iloemyhens - yes my mother had a uterine prolapse and had a frequent need to go to the loo but found nothing much came out.

As she as an old lady by then she had a hysterecomy but I know it can be repaired. You need an urgent surgical intervention.

Kitsilano · 06/03/2011 10:36

BeenBeta - thanks - that was what I was wondering but hoping not to be the case. I think either way I would have to try the antibiotics again because the first step would be to try to get rid of the infection, then manage the IC. Blood in urine sounds dreadful! Are you taking medication for IC?

Ilovemyhens - poor you I have the same and am also wondering if it could be part of the cause of my issues especially as my symptoms are worse at the end of the day presumably when gravity has taken its toll.

However it doesn't explain why I was symptom free for 6 months after a 6 week course of antibiotics so I dont know. I am feeling pretty confused and as if my body is falling to pieces!

Let me know how you get on at the gp.

Original poster
hellsbelles · 06/03/2011 10:57

kitslano - sometimes IC can just go into remission...not sure why. Also do you think perhaps while you were on antibiotics and for a bit after you were taking care to avoid things that felt 'wrong'? I know when I take antibiotics...even before I knew about IC I would always stop drinking alcohol and stuff. Maybe that helped relieve things.

But I do keep reminding myself that IC is one term to cover the symptoms if that makes sense. it can can range from someone with bleeding hunners ulcers and a shrivelled bladder to someone with no ulcers at all who experiences the symptoms.

I think it's important to remember that when looking at all the horror stories on the forums. Also those that are suffering so terribly took years and years to get a diagnosis and were inadvertantly not giving their bladder time to heal...so further damage was happening. so as you say - take one thing at a time.

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ilovemyhens · 06/03/2011 14:15

I wouldn't mind a hysterectomy really. I don't want any more children, so it wouldn't matter if it was removed Hmm

On a lighter note, after 10 years of dh complaining of various madeup illnesses, he now has absolutely no chance of competing with me over this Grin I always said he'd be up the creek if I ever needed a 'womens operation' Grin

Strangely, he has been fussing around me and doing loads of yardwork today Hmm Perhaps my problem might actually galvanise him into a bit of action at last. I do tend to do pretty much everything around here.

Original poster
hellsbelles · 06/03/2011 14:32

Ilove - it says this on wiki 'Minor prolapse can be treated with exercises to strengthen the pelvic floor muscles; more serious prolapse, e.g. complete procidentia, requires pessary use or reconstructive surgical treatment. Reconstructive pelvic prolapse surgery may be done without resorting to complete hysterectomy by hysteropexy[2], the re-suspension of the prolapsed uterus'

It may well be you don't need a hysterectomy (even though you wouldn't mind one!)

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ilovemyhens · 06/03/2011 14:43

I wouldn't be happy with a repair as they can fail or need repeating after a few years.

Just whip it out I say. No more periods, no more worrying about contraception or pregnancy Grin

Dunno, will have to see Sad As long as I'm not peeing every 5 mintues and getting infections I'll accept anything Confused

BeenBeta · 06/03/2011 14:57

ilovemyhens - my mother never looked back and was happy to have her hysterectomy. DW had a hysterectomy last October for a different reason and has struggled a bit with the impact of an instant menopause. There is no way you will be doing any yardwork for 3 months after so DH will need to step up to the plate.

ilovemyhens · 06/03/2011 15:06

Do you need hrt after having it done? Does that postpone the menopause? I'm early 40s, so not quite ready to fall to bits just yet.

ilovemyhens · 06/03/2011 15:07

I looked after somebody at work who'd had a cystocele and rectocele repair and she was in a terrible state and constantly incontinent Sad

BeenBeta · 06/03/2011 15:23

You may well need HRT to deal with the symptoms of menopause but I feel too embarrased not well enough qualified to advise.

You cant postpone menopause but you won't fall to bits either.

ilovemyhens · 06/03/2011 19:59

Eee, I think the antibiotics are working. I haven't had any frequency all day Hmm

Original poster
hellsbelles · 06/03/2011 20:58

good news ilove...

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Original poster
hellsbelles · 07/03/2011 09:30

how is everyone today?

Beta - is the prelief still making a difference?

ilove - I hope the AB's are still doing their job.

I have a 'fun' task today! I'm doing the 6 hour urine capture thing....to see what if my gut is leaking!

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BeenBeta · 07/03/2011 09:39

hells - after 3 days I definitely feel the Prerelief is having an impact on my overall sense of well being.

I have been really hammering myself with all the trigger foods in the last 3 days and the level of indigestion and stomach acid I normally have is virtually nil. I also get a lot of aching in my muscles and 'twitchy legs' at night which I think is acid related. That has also entirely gone.

My bladder does still hurt a little at night but nothing like before. If I eat and drink more carefully, and keep taking Prerelief, I am wondering whether after a month or two the bladder will gradually become less sensitive.

Only time will tell but I am very happy with the results so far.

Original poster
hellsbelles · 07/03/2011 11:36

Beta - that is wonderful. Long may it continue.

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ilovemyhens · 07/03/2011 12:27

beenbeta I'm really glad that the prelief is working Smile

The antibiotics seem to be working, still scared to get excited and still need to go to the docs for an examination. Only been to the loo three times this morning Grin

hellsbelles good luck with your urine capture.

Original poster
hellsbelles · 07/03/2011 13:32

ilove...I feel the same! I am so much better since my last batch of ABs but then I get scared by the forums where they say 'oh but that happened to me and then it came back'...but surely it sometimes doesn't! And let's hope it's the way with us.

Urine now captured Grin and about to be sent off...

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BeenBeta · 07/03/2011 13:36

hells - now you have told us you know you will have to discuss the results. Grin

Glad to hear the ABs are working for you and ilove. Never seemed to work for me but hey whatever works is good!