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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.

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Original poster
hellsbelles · 30/04/2011 18:45

evening all...hoping again that silence is due to problem free bladders. I had a horrendous day yesterday which sent me into panic mode but I'm trying to calm my nerves and remind myself that I have many more good days than bad ones now.

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MoreBeta · 30/04/2011 18:49

I've been away for a while but PreRelief still working well. Totally cured my stomch acid issues and very substantially reduced bladder symptoms - especially if I am fairly careful with my diet.

It will never be 'cured' but life is a lot better.

Original poster
hellsbelles · 30/04/2011 20:22

That's great news Beta. You are a success for the thread! I'm tempted to just ignore my herbalist and get hold of some just so I can have some normal food once in a while!

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MoreBeta · 30/04/2011 20:37

I am just ever so grateful to you and everyone else on the thread pushing me into trying it.

Do give it a try. I still can't go overboard with spicey food etc but I can have a glass of wine and some nice food and not wake up in the early hours of the morning feeling like someone has stabbed my bladder with a red hot poker.

I just dont get that feeling anymore - which is an immense step forward after years and years.

Original poster
hellsbelles · 30/04/2011 20:50

Beta it really makes me very happy that you have something that helps (and I'm so glad I posted about it!)

That's also why I do make an effort to keep the thread active as I think there are lots of people suffering with these horrible bladder issues and this thread has so many ideas on it from lots of contributors that one is bound to help someone!

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LoveAndSqualor · 01/05/2011 21:37

Hey all, just back from holiday, where I was supposed to have wifi but DIDN'T Shock Shock. Quite paralysing. V glad to be back. Tho holiday was marvellous Grin

Beta, it's SO wonderful that prelief's working for you - it's fantastic that you can relax a bit and enjoy eating normally, once in a while. Hurrah for you and hurrah for the thread!

Hells, how are you feeling now? Sorry you had a crappy day - any better now? Can you pin it to anything - different food, more stress?

As for me, doing really very good at the moment - so much so that I'm thinking about adding some stuff back in ... tho am a little nervous about that ... I'll keep you posted. How's everyone else doing?

Original poster
hellsbelles · 02/05/2011 08:36

L&S - great to have you back. I hate being internetless...it's so disconcerting!

HOw did you cope with holiday foods? Did you have a wonderful time?

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Original poster
hellsbelles · 17/05/2011 12:14

just checking in to try and keep this thread alive.

All good here - my frequency is amazing now. I get the odd stinging now and then but it's really got to the stage where I forget about my bladder most of the time. I am still on the strict diet though but I'm introducing a few new things at a time.

I hope everyone else is doing well and conquering this frustrating thing.

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IrishMandie · 20/05/2011 16:01

Hi All,

I have loved reading this thread, Hellsbells and Lovean Squalor I feel just like ye. I never had any bladder problems until 3 weeks ago. I was asleep and was woken up by a servere pressure to urinate. I went to the toilet and no relief and had to keep going. This went on for the next three weeks waxing and waning but always worse at night and waking me up but not every night. Went to doc and asyou all know as prescribed anti biotics 3 times and no effect. I dont have any infection ( tested ) and had swabs taken aswell with nothing found. I went to a urologist who suggested a cysto but after booking the app and reading some horror stories on this I dont want to have it. Instead I have made an app with Deborah Grant for next Friday. I have the constant feeling I want to go and when I do I get relief for about 5 mins before I want to go again. I dont have any pain but this constant pressure is enough to get anyone down.
I have another problem though aswell. I have suffered from panic attacks and Generalised anxiety disorder by 20 years. Last year I had Chronic Fatigue for 4 months and I can tell you some of the horror stories on that thought I would be bed ridden for life but I got over it by changing my diet and using vitamins. I have been very stressed out again lately and that is definitely not helping my symptoms or is reading some of those American help forums.
HellsBells - how are you getting on with Deborah do you think she can help me?
And does anyone on this thread think that anxiety could cause all these symthoms even waking me up from sleep?

IrishMandie · 20/05/2011 16:06

Hi HellsBell,

One more question how do you see Toni? Do you have to travel to MadienHead looks like a long way?

Thanks

Conflugenglugen · 20/05/2011 16:15

I'd second "You Don't Have to Live with Cystitis", and also look at sugar in your diet. I cut sugar down drastically and I don't have it anymore.

Original poster
hellsbelles · 21/05/2011 20:27

Hi Irishmandie and conflug - sorry I haven't checked in sooner,

irishmandie - gutted you are dealing with this too but glad you are on the thread as we are all finding that this can get better. I absolutely second what conflug says - it's a great book.

I started out seeing Toni in Harley Street (she occasionally has appointments there)...but she wasn't able to get there often so now I end up going to maidenhead...it is a bit of a trek but for me it's made such a difference it's worth it.

I'll pm you about Deborah - I think her diet is very very good (but bloody difficult)...but a few other things I'll mention in the PM.

And as for your question about anxiety - I absolutely think it can all be linked and even if it doesn't cause it (which I wonder possibly if it can in some cases it can)...there is absolutely no doubt it makes it worse. I guess unless we have the cysto hydro test we'll never know if it's 'real' IC or just the mind playing tricks...but then again drs still diagnose IC even if Hunners ulcers aren't present in the hydro so for me it's not worth the risk of the procedure. I'm treating myself as if I have IC but allowing myself the secret thought that I haven't really got it - the only problem with that approach is that if I ever get a re-appearence of symptomsI get so depressed that my secret hope probably isn't true (does that make any sense? probably not!)

Deborah gave me some herbal remedies to help with my anxiety over it all and Toni has been a huge help on that side too. It's one of the things that is mentioned a lot in the bladder book conflug mentioned...the bladder is very affected by emotions (excuse hippy dippy speak)....we are all used to needing to visit the loo regularly in times of extreme anxiety (i can remember being glued to the loo before school plays I was performing in!)...and it's no co-incidence that people say 'I almost wet my pants' to describes times when they've been afraid.

Anyway - I'll stop babbling on...but I will say that a just a while ago I was in despair over this and like you spent way too long on the US forums...which really are a very distorted view of all this. As L&S sensibly reminds me...the people on there are the ones suffering and in pain...the millions of others that have found their solution are out and about enjoying themselves!

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Original poster
hellsbelles · 21/05/2011 20:29

sorry I didn't proof read that stupidly long post...please forgive all the mistakes

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Original poster
hellsbelles · 21/05/2011 20:33

conflug...out of interest are you able to eat acidic foods with no problem? AT the moment I have had to cut out carbs, gluten, sugar, dairy and acidic stuff (like tomatoes, coffee, tea, fruit, alcohol Sad)...I'm hoping I can start re-introducing stuff eventually. Is it just sugar that you have to always avoid?

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Conflugenglugen · 22/05/2011 07:17

hellsbelles - No, I pay in spades if I eat certain foods, especially coffee and wheat. I've cut out most wheat now, as well as sugar - natural as well as refined and artificial. Sitting here with a coffee though :) - which I am also planning to give up when the time is right.

I will have the odd biscuit or bite of chocolate - it's not 100% avoidance. But I do find that cutting down drastically has helped no end.

Conflugenglugen · 22/05/2011 07:19

As an aside - I believe that the cystitis was caused, for me, by too much candida in the gut: hence the cutting down on sugar and yeast-related substances. When my candida symptoms subsided, so did the cystitis.

Conflugenglugen · 22/05/2011 07:20

Ah, I've just read that you're getting tested for that. I think you might find a correlation.

Original poster
hellsbelles · 22/05/2011 08:48

conflug - I ended up not have weirdly high candida issues (I was sort of hoping I did as at least it would be an answer)...probably due to the fact I had recently been doing the horribly strict Dukan diet for weight loss.

I've read a few people saying they live on an 80/20 rule...that they can get away with having wheat/sugar/diary 20% of the time as long as they stick to rules most of the time. Have you tried Prelief? Beta has had lots of luck with that...I'm thinking of using it when we go to friend's for dinner...so I don't have to write out a long list of 'I can't have this, this, this, this'!

Please tell me you can now have booze?!!!

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IrishMandie · 22/05/2011 12:53

Hellsbells-So u r still on the diet but have your problems been solved?I find I get very upset about this.Last night I went out had wine and all kinds of foods but don't feel any better or worse today so I find it really hard to connect it to food.Did u find that at the beginning r was there a direct link?
For me the nighttime is the worst as it just keeps waking me up because of the pressure to go and this is causes me to worry even more that I will get sick with something else.Also on the intimate relations first I can still do that and don't find it painful but do find it harder to relax as I thing something will happen so puts me off a bit.
I hope that Deborah can find out what is wring once I tell her all these things.

Original poster
hellsbelles · 22/05/2011 14:08

irish - yes pretty much...there are occasional bad days but most of the time I feel totally normal (apart from having to eat so specifically!).

Up until fairly recenlty I would cheat with the diet and it didn't seem to have too bad an effect...but conversely I wasn't really getting much better...just better 'ish'...once I started being super strict that is when I really noticed a huge difference.

I completely get how upsetting this is. It's one of the most stressful things I have ever gone through (and I have had my fair share of stresses through the years) - and honestly most of the stress for this was caused by one stupid evening reading all those horrendous patient stories on the IC website. I really was imagining the worst case...but the more I research this, the more I believe it really can be controlled, even beaten (though I know the medical opinion is that it's incurable)...if you use a scattergun approach of alternative therapies. I'm also amazed at how common it is but how little people talk about it. Somehow, for me, knowing that lots of people have it made me get it into perspective.

One this L&S got me doing and I think has helped a lot is bicarb baths (otherwise known as healing baths)! You bung half a cup or so of bicarbonate of soda a few drops of tea tree and a few drops of lavender oil in your bath and just soak. I think she puts lots of other things (and some of what i use may not suit you)...at the very least try just the bicarb. It really seems to soothe everything a little.

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Conflugenglugen · 24/05/2011 18:12

I stick to the 80/20 rule ... sometimes 70/30, and I do have booze, and the symptoms are in check still - although I still feel sluggish sometimes. My candida results were off the charts: in the millions. No wonder I was feeling so grotty.

Original poster
hellsbelles · 26/05/2011 10:45

You have booze! Bloody marvelous. I'm sort of getting used to everything else but oh how I miss that.

I've had a rough few days...I know it's cause my AF is due but I still get all stressed and nervous that it will go back to being bad all the time. Also combined with PMT I'm not very good to be around.

DH makes me laugh sometimes...he said the other day..."do you think this is what they used to describe as 'trouble with my waterworks' in the olden days?"...I bet it was.

How is everyone else doing? Hopefully more good days than bad?

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IrishMandie · 28/05/2011 16:25

Hi All,
I am not too good.Have been to see Deborah and thought she was really good but waiting for diet now and tablets.This constant feeling of wanting the toliet is really getting me down it is soooo uncomfortable and makes me really stresses out which does not help.I just hope I start to feel better soon as I wouldnt wish this on my worst enemy.

Original poster
hellsbelles · 28/05/2011 19:42

Irishmandie - so sorry you are suffering so. Are you being very strict on diet already? And it's making no difference? That's tough.

I can only say that I did feel that way when I first got this and it does get better and I know there are lots of others on the thread that have found their solutions.

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IrishMandie · 28/05/2011 21:07

Have just started the diet yesterday,well what I think it is a Deborah has not sent it to me yet.She said I need to do low carb so I have cut out all carbs and waiting for her email.I have not notice any difference yet and she is sending my some probiotics,anti inflammataries and something to help me relax.Hopefully when I get the diet and the drugs I will start to feel better.
Am going to go for MRI aswell just to make sure there is nothing else going on.She does not think I have ic just a low immune system and bad gut cause by over use of anti botics and stress.