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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 · 27/02/2011 13:46

Cabbage - that must be so hard. Sorry you have to battle this for so long.

Have you tried any of the herbal stuff that gets mentioned on the forums and and stuff? It's interesting that you found relief from Chinese herbs.

L&S...it wasn't curry I'm not that brave...I just stuck to some seafood rice and so dim sum type stuff.

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cabbageroses · 27/02/2011 14:34

hells- I have tried everything known to man! I used to have a cupboardful that could have stocked Boots!

Original poster
hellsbelles · 27/02/2011 14:35

have you ever been to Deborah Grant at the Hale clinic?

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cabbageroses · 27/02/2011 16:48

No.

But I have seen lots of other people!

Original poster
hellsbelles · 27/02/2011 18:13

L&S will be able to tell you much more as I've only just started seeing her but she seems very confident about treating IC. Here's her link deborah grant

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cabbageroses · 27/02/2011 19:49

thanks.

ilovemyhens · 27/02/2011 20:08

I'm off to see the gp tomorrow for some antibiotics Sad

I can't shift this infection and it's getting me down. I hate antibiotics, but I feel I have no other options. I've been drinking my own weight in hot water every hour, taking multiple herbal/natural products all to no avail Sad I've done a pretty good job of keeping it at bay since December, but I give up now as it's affecting my sleep again.

I'll put an msu in tomorrow morning in the hope that something shows up this time. I have a plus of protein in my wee, so perhaps they should be able to find something.

Original poster
hellsbelles · 27/02/2011 20:38

I feel weird to say this but I do hope you do have an infection that shows up so you can just clear it up with the AB's - seems much simpler than dealing with IC! I never thought I'd wish an infection on someone! Good luck

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ilovemyhens · 27/02/2011 20:45

Thank you Smile I hope it's an infection too, but I'd like to know why it keeps recurring. Perhaps it wasn't killed off with the course of antibiotics.

IC sounds like a complete nightmare and I can't believe they just allow people to suffer like that and have to investigate and sort out their own treatments Sad I must admit, my gp hasn't a clue about bladder stuff and tried to treat me with a Canestan tablet when I first went to see him. A week later I ended up with a kidney infection and could barely walk because my kidneys were hurting so much Hmm I told him it was an infection, but he just told me my msu was clear so it couldn't be Hmm

Original poster
hellsbelles · 27/02/2011 20:55

ilovemyhens...it does seem like some people are more prone to it (normal recurring cysitits)...I have found a really funny and very old fashioned book (recommended by a friend) that talks through lots of ways to avoid recurring cystitis...a lot of things sound bonkers but a few make a lot of sense. here.

It may be worth a read (I'd lend you mine but I'm still ploughing my way through it). Another really good one is you don't have to live with cystitis. I'm reading the IC bits in it but there seems to be lots on normal cystitis too.

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ilovemyhens · 27/02/2011 21:00

Yes, I saw the you don't have to live with cystitis on Amazon the other day. I'll buy that if this damn thing persists and I need to resort to sorting myself out. The doctors seem to be clueless and just don't understand how it feels to be thinking about the loo all the time Sad

I'd never heard of IC before all this trouble. Sorry that you're having so much trouble. It's a steep learning curve from what I can gather. I read the COB forums and just felt so awful because most of the people on there just seem to have suffered for years and years.

Thank you for the links, I'll take a look.

Original poster
hellsbelles · 27/02/2011 21:02

Sorry - meant to add how awful that must have been to get such bad care before. I hope your GP learned his lesson!

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Original poster
hellsbelles · 27/02/2011 21:04

x-post!

Actually the last 4 or 5 days I've started to wonder if my doctor was being a bit premature in suggesting IC. It seems to be easing so much and I never had the pain that so many have to deal with. Shall I have a curry and glass of wine to test it?! (not really!)

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ilovemyhens · 27/02/2011 21:10

Dunno whether or not he learned his lesson as I went to somebody else in the practice, but she just gave me a stupid leaflet and told me to drink cranberry juice Hmm I felt like screaming at her! If anybody mentions bloody cranberry juice one more time I'm going to strangle them!

What have you been doing for the symptoms to ease?

I wouldn't have the curry and wine if I were you Grin

Are you meant to have washes with water during the day after visiting the loo? I'll order that book tomorrow, but was just wondering in the meantime.

Original poster
hellsbelles · 27/02/2011 21:23

Oh yes - the infamous cranberry juice! I read somewhere it's actually like battery acid for a sore bladder!

So far I've been cutting out all caffeine, tomatoes, booze and spicy stuff. And I've been a bit manic with the washing. I only use simple soap for my main washes (morning and night) - then after every loo visit at the very least I rinse. If I'm at work I just run a piece of loo paper under the tap first and take it in with me so I can rinse that way(sorry if TMI!).

I've been taking garlic capsules as well as the normal evening primrose and gloucosamine and chondratin that i take (not sure if that makes any difference to IC)! I did take dmannose for about 3 days before I saw Deborah but she wanted me to stop that and stick with what she's going to prescribe. It seemed fine to me and didn't cause any flares (and co-incided with the reduction in frequency for me).

I haven't risked sex since the symptoms started but apparently the trick is to drink tons of water about 20 mins before...then just before go to the loo and have a wash and straight after another wee, tons of water and another wash - all very romantic.

If I wasn't seeing Deborah I would continue with the dmannose and also start the Aloe Vera which a lot of people say helps!

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ilovemyhens · 27/02/2011 21:29

I'm taking d-mannose too. Haven't got round to getting any Aloe Vera. I was putting Aloe gel on my bits and pieces to try and ease things just before getting into bed each night so that I could get to sleep Hmm

I'm also trying garlic caps and oregano caps too.

I didn't know tomatoes can cause problems. I haven't been using soap at all, just warm water.

Original poster
hellsbelles · 27/02/2011 21:32

tomatoes are apparently one of main triggers in IC (so I assume also not good if you bladder is irritated with cystitis too)..might be worth avoiding till this clears up? Alas canned are just as bad as fresh (I'm finding this really hard...I seem to use them in all my cooking usually!)

The Aloe Vera that gets all the reviews is the Dessert harvest stuff from teh US. As I can't use mine you are welcome to it - just PM me and I'll post it to you. I'd much rather someone got some use out of it than it go to waste (it's brand new and I haven't even opened it!)

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Original poster
hellsbelles · 28/02/2011 08:58

ILH - good luck today - if you do get antibiotics will I know you probably know (but just in case) can you take a really good probiotic?

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ilovemyhens · 28/02/2011 10:07

Off to docs at 11am. I'm already taking a probiotic, so perhaps that'll help.

I've had a cup of milky coffee 'cos I've thrown in the towel at the moment lol

Original poster
hellsbelles · 28/02/2011 11:43

you rebel Grin I hope you enjoyed it! Good luck at 11am...here's to lots of lovely bacteria

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ilovemyhens · 28/02/2011 11:50

I am now living in the world of nitrofurantoin Hmm

and

She recommended cranberry capsules again saying that they don't make your urine acidic, but alkaline instead Hmm dunno whether to believe that one tbh.

Never mind. Armed with said nitrofurantoin, I am now going to spend the day watching tv and enjoying the nasty side effects, hopefully might persuade dh to wait on me hand and foot Grin

Then again, probably not Sad

Are your symptoms improving hellsbelles?

The gp also said not to have anything with vitamin C in because that's highly acidic and irritant to the bladder/waterwork dept.

Original poster
hellsbelles · 28/02/2011 14:15

that's weird she's saying that about the cranberry...everything I've read says steer clear! Though totally agree on the vit c!

When will they get the results back from your culture? Fingers crossed this doesn't take long to work for you...how long a course did she give you?

I'm feeling not too bad today. If I didn't know about IC I would just think, oh I'm going a lot to the loo and not stress about it (if that makes sense). So I keep thinking maybe I just had a month of weirdness and now it's easing off. Hopefully I'll get more answers from Deborah after tests. I'm still being relatively good about my diet (not gluten free yet)...in preparation for the fact I will have to be totally good on whatever diet she cooks up for me!

L&S - are you about? How was the train journey?

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ilovemyhens · 28/02/2011 14:51

I have a five day course - four tablets a day. She said that should knock it on the head. I hope it does. She suffers from frequent utis too. I went out to the shops earlier on, but had to come straight home Sad My back is hurting too and have a headache, so I think it's heading north again.

Where do you have to go to to see Deborah? I went gluten free a while ago to help my bowels and it was great. Hard sticking to it at first, but you feel so much better health wise. I can recommend it. There's loads of gluten free foods in the supermarkets these days - the bread's not great, I just stuck to gluten free crackers instead.

Original poster
hellsbelles · 28/02/2011 14:55

oh you poor thing...and typically the minute after I typed I felt a bit better I've just had a mini flare up! no pain but constant needing to wee! Let's hope your AB's do kick in quickly ( you usually can see a difference by the 2nd day can't you).

I have tests on Thursday and then see her the following Friday which is quite a way away. I shall definitely be after inspiration on making the diet more palatable! Thanks for the tip off on the gluten free crackers.

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LoveAndSqualor · 28/02/2011 16:34

Hey there- oof! Train journey was pretty ok, and having a good day today. Had an appt with Deborah this morning and she's changed my prescription (she changes it every month so nothing can develop a resistance) and warned me to expect some serious die-off Grin can't wait ...

ilovemyhens - I think your gp sounds spot on - hurrah for her. My friend who sits next to me at work and had IC for years (didn't find out until I came down with it - how strange is that?) used to take the cranberry tablets a lot - they have a different effect from the juice, apparently, which I can testify is the very devil. There is some weird thing whereby some acid things can become alkaline in your body (don't ask me - well out of my depth!). SO sorry you're having a crap time on the ABs - I really hope they do their job. Keep taking the probiotic - and keep us updated Smile

And hells - argh to the mini-flare! Hopefully it's passed already. And even if it hasn't - you're doing all the right things. Try not to worry too much (if such a thing's possible!)

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