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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:
pinkthechaffinch · 14/08/2011 12:21

Hi everyone, can I join this v long thread?

I suffer from frequent bouts of cystitis, 2 in the last month and my GP has prescribed me 200mg of Trimethroprim [sp?] even though the tests aren't showing active infections.

It does kind of work but they make me feel rubbish and the symptoms have been returning as soon as the course ends.

I've been cutting out all caffeine for the last few days which does seem to be helping and downing the cranberry juice.

Symapthy to all fellow sufferers out there,it really is the worst, and DH isn't being as sympathetic as he might be-seems to think it might be like an STD Sad.

ClaimedByMe · 14/08/2011 13:14

Can i join in too?

I also suffer from regular cystitis but had been taking cranberry tabs for the last 2 years and all was good until about 4 weeks ago when when i got another bladder infection, got antibiotics over the fone but have been left with a heavy burning pain in the bladder area and a lot of pressure when needing to wee and even after! I am also weeing 10-15 mins after drinking!

Is any of this sounding familar?

I also suffer terrible anxiety and havent been to the docs yet but dp is off this week so will try and go.

pinkthechaffinch · 14/08/2011 14:13

poor you, claimed, I'm going to get some cranberry tabs tomorrow. Am quaffing cranberry juice as I tab- on offer in Tesco at the moment luckily!

Which antibiotics were you prescribed just out of interest?

Original poster
hellsbelles · 15/08/2011 20:52

hello claimedby and pink - I'm just rushing in quickly as I'm trying to pack for holiday! Sorry you are suffering. Just a quick point. If there is any chance you have interstitial cystitis rather than the normal type it may be worth laying off the cranberry juice for a while as that can make it much worse. There is a lot of blurb on a diet that helps calm the bladder IC diet here. Sorry to post and run - hopefully you will both be better quickly!

Turnwest - how are you? I hope you have found some relief.

OP posts:
pinkthechaffinch · 16/08/2011 07:13

Hi hellsbelles, thanks for the interesting link.

I don't think I have IC, mainly because the cranberry tablets I'm taking seem to be making a difference, thank goodness. I had my first uninterrupted night's sleep last night and off the antibiotics!

am keeping everything crossed that today is another good day.

twooter · 16/08/2011 09:35

Just thought I would add something. A close friend of mine had similar symptoms 2 years ago. ( I had a thread chat with beta then but under different name) after lots of tests/ referrals etc, they were told there was nothing physical and it was all psychological. They kept asking about stress. - the only stress was the bladder problem. It took over their whole life.

Anyway, now it has completely gone away. They were put on Prozac for a while, very low dose, not sure if it made a difference or not. It also coincided with a new obsession/ hobby which may have helped mentally. I make a point of never mentioning it, incase it triggers it,
But they can now do all the things that they were previously unable to - fly, cinema etc.

I know how frustrating it is to not get a diagnosis, but it isn't necessarily a bad thing

Katieofkaterik · 24/08/2011 11:37

I'm so glad I have found this thread. The symptoms described here are identicle to what i've been going through on and off for the last 3 years.

I have had scans and a camera inspection (sorry can't remember the medical term) and never got any closer to a diognosis. My GP has been dismissive (thats when i'm able to get an appointment!) I was perscribed Buscopan about 6 months ago when my symptoms last flared up which seemed to help. Last weekend however it all came back with a vengence and lasting longer than ever before. I thought after the last flare i'd finally got rid of it. :-(
It's very comforting to hear that i'm not alone, as you all know at times it can be unbearable.

Has anyone tried Ditropan? I was percribed it on Monday night by an out of hours GP, it helped with spasms but made my mouth very dry and bloated me (it contains Lactose, which I generally avoid). So i have switched back to Buscopan today (Wednesday). The Buscopan seems to take away the spasms but doesn't stop me feeling the need to wee every half hour!

I will look at some of the links on here and hopefully my GP will refer me to a specialist when I see her next week.

So anyway thank you Hellsbells for your original post, i have been feeling extremely frustraited and alone through all of this xx

ameliagrey · 24/08/2011 12:10

Loads and loads of info on this message board etc.

www.cobfoundation.org

(Might have UK at end of that.)

turnwest · 02/09/2011 17:04

Hi,

After a few miserable weeks I took a good look at my diet and realised I was not being particularly careful. I ve gone back to basics and I am now just eating foods on the ic diet friendly food list and it seems to be helping. The problem is I want a baby, and everytime we TTC the day after it flares up again, very frustrating!!!

The Gp is rubbish and won't refer me to a urologist, I've just had some blood tests done to rule out other things which have come back fine, so I m going to have make another appointment! Sorry for everyone else who is suffering but you re definitely not alone

Original poster
hellsbelles · 03/09/2011 09:37

hello all, I've been on holiday so sorry not to have kept up and I've got to go away this weekend again so sorry I haven't caught up properly but in brief...

Katie - sorry you've had to join us but there are tons of things that you can do to try and find what will ease your symptoms. If you've got the energy it's worth reading back through the thread as there are lots of different ideas. For me it's a very strict diet (I can PM you if you want to take a look - it's different from the standard IC diet), acupuncture (again...if you want details of the lady I see let me know) and herbs. I know that sounds obsessive but I needed to be able to get on with life and this was what I needed to do. The aim is I can start introducing foods back gradually. So I'm basically just having lots of meat, fish and veg. Boring but managable. And I have cheated a few times and had a glass of wine without a horrendous aftermath...so I'm hoping things are improving.

The other thing is that the diet doesn't always make a difference straight away so you need to persevere and everyone has different triggers so while I can eat nuts and avocados they may be awful for you - you start to get a sense quickly of what you can have.

Turnwest - I have found conventional medicine frustrating with all this as they don't have a solution so they don't seem that bothered. Urghh. Sorry about your TTC vicious circle. I hope it's not TMI to say that now I have my diet under control that side of things is absolutely fine - so hopefully you'll find that soon. Even better I've heard that some people find pregnancy puts them into remission! Fingers crossed you are one of the lucky ones.

OP posts:
VivaLeBeaver · 03/09/2011 09:50

Pinkchaffinch - there is no way it is an STD, hope you can convince your dh of this.

I've been ok since gp put me on the 100mg of trimethropin daily u til we went on holiday and I missed a few doses. The symptoms came back and it's taken two weeks of trimethropin to really clear it up.

I keep thinking there must be a physical reason if the trimethropin prevents it and clears it up. I'm just scared the gp will stop letting me have it.

Original poster
hellsbelles · 05/09/2011 12:41

Viva - did we talk about broth cultures before (sorry I'm losing track!)?...sometimes infections aren't picked up in normal tests but apparently broth cultures can pick up things that are missed. So maybe you do have an infection and that's why the ab's are working. I don't think you can get your broth culture done by a GP but maybe google a bit to find if there is somewhere that does it near you (you will probably have to pay though which is a pain).

OP posts:
VivaLeBeaver · 05/09/2011 12:47

Well I mentioned broth cultures to the urology consultant and he looked really puzzled and said he didn't know what I was talking about!

VivaLeBeaver · 05/09/2011 12:48

I'll definitely check out getting it done privately though. That's a good idea.

pinkthechaffinch · 05/09/2011 15:37

Well I'm fine for the moment. just finished a course of new antibiotics. Went back to the gp to find out what urine sample came back with.

He looked bemused and said, it came back fine, you've never had a bacterial infection so we are going to stop giving you antibiotics in the future .

next time i have a flare up I've got to go back and see him Confused

If when it happens again, I'm goin to ask to be referred to a consultant I think.

noddyholder · 05/09/2011 15:41

I have been having recurrent infections and on several occasions was in pain but the sample came back clear! Have had a ct scan now and it is stones. There is a type of stones that only form in women who have repeated UTIs and I have them They often don't show on ultrasounds or x rays but are a lot more common than people realise. They have to be removed though and then the urine kept acidic because they only grow in alkaline conditions!

pinkthechaffinch · 05/09/2011 16:51

are they kidney stone or bladder stones, noddy?

are you going to have them removed?

noddyholder · 05/09/2011 17:40

They are kidney stones. They only occur with recurrent infection and rarely pass through on their own! I haven't seen the urologist yet but will definitely need some sort of surgery.

pinkthechaffinch · 05/09/2011 19:25

Lets hope they get it sorted out nice and quickly.Must be a good feeling to know what it is wrong though, IYKWIM.

VivaLeBeaver · 05/09/2011 20:03

Btw - I have my cystoscopy next week and was wondering if it was worth stopping the trimethropin until after it to try and bring on a flare up? At the minute my bladder probably looks ok as I have no symptoms but would a problem be more readily diagnosed if I had inflammation and symptoms at the time? Or is it nothing to do with that?

VivaLeBeaver · 05/09/2011 20:06

Noddy - so the infections caused the stones in the first place. But then did the stones make you more prone to infection? Are you likely to be cured once the stones are gone or do they think you're still likely get infections?

noddyholder · 05/09/2011 20:26

The infection makes the ph of the urine a perfect place to grow these stones they are basically little balls of infection Once you have them the can keep causing infections which is why antibiotics don't work. They have to be all removed and then the urine kept acidic so that they can't occur Cranberry juice does this but does not work for active infections.So I need them all removed and then I will try cranberry and try and keep my urine acidic by testing with strips There are also medications which can do this.

VivaLeBeaver · 05/09/2011 20:32

That sounds promising then that it can all be knocked on the head, great news. Right, I'm going to ask for a ct scan next.

noddyholder · 05/09/2011 20:37

You should. They plan to keep me on antibiotics at night until the stones are out then gradually withdraw them and see how I am.

worzelswife · 06/09/2011 21:41

Hi, I think I need to join this thread Sad

I've had bacterial cystitis 8 times this year. Anti-biotics cleared it up each time marvellously.

Then I got it, it must be a month ago, took the usual pills but it didn't go away. A urine sample was sent off and came back with no signs of infection whatsoever. A month of burning later and I am pretty convinced it's IC. I am waiting to have a scan and need to go and be checked for STI's but I just have this sneaky feeling it is IC.

It's really dragging me down because I already have two chronic conditions which make me feel lousy. I'm just not too sure I can cope with another Sad.

I have ordered a book on it off amazon and am looking into the diet online. Also ordering some prerelief because if I can even halve the pain I will be immensely grateful. I'm not getting any urgency or the need to pee lots and lots. It just hurts all the time, it feels like specifically in my urethra, and burns when I do pee.