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've currently got another flare up. Have changed my diet and its not helped. This is my 2nd flare up in 5 weeks. Took antibiotocs for the first one and it cleared up. A few weeks later and its back. Taking antibiotics again and beginning to feel better. Thoroughly pissed off.

GP is being crap. Said if I get it one more time he'll refer me to a urologist. Why do I need it one more time. Does the fact that I've had it constantly since Novemeber with little breaks when antibiotics have briefly cleared it up not be enough for a referral now?

Irish - it's great news she thinks it's not IC...try to concentrate on that. 1 day on the diet really doesn't do anything....I know it's hellish but try and stick with it. As far as I know MRI's don't pick up IC? Did Deborah suggest you get one?

Viva - it's rotten that the GP is dragging his/her heals over this. Have you gone hard core with the diet? I have had to cut out so much but it's really help (currently diary, gluten and acid based foods are off the menu). Have you had a chance to read through the thread (I know it's long!)...lots of different ideas...cranberry tablets, waterfall d'mannose, pre-lief tablets, aloe vera, marshmallow root tea. Worth a read to see if any sound like options you want to try while you wait for the GP to get their act together.

No I ended up in A&E on Thursday as I had searing pains at night and didn't feel like the toliet.The docs there redid my tests and saw nothing but said my pain is too far down for bladder and to get MRI.Deborah said if the MRI is free which it is then go for it no harm specially seen as I have scoliosis (curve in the spine)and it might be putting more pressure on my pelvis.
Pains have gone now but urgency to go has not.Am not too strict on diet yet as waiting for deborah to send it but think it's best to start with cutting out the carbs anyway and have started to drink only bottled water.

that must have been horrible. when is the MRI?

Not having MRI now as the Urolologist said she does do them and it wouldnt be anything to do with my pelvis. She wants another ultrasound on pre and post drinking and if that doesnt show anything that a load of tests to see what is going on. She also gave me detrolistol to take. I am sooo confused now as to what to do, I am taking Deborah medicines ( my probiotics never arrived which I am upset about and she is on holiday so cant check where they are, so will have to wait till she is back on Thursday) and doing the diet now for 4 days without any lessening of my symthoms. I am still be woken up every 2 hours and have a strong urge all day.
I am having the glucose test today to see if it is yeast.I am soo upset about all this and my boyfriend just says be positive it will work but when I am still in soo much discomfort and having to work it is very hard. If I thought I was getting even a little bit better I would feel good about things as the diet is very hard.
The urologist doesnt want to see me again unless I take the tablets so then she can rule out over active bladder and do other tests, but how would I get that over night?She said if you want to do the herbal thing then do but don't mix things.
Deborah also perfers that I dont see Toni at the same time because I wont know what is working, do you thing I should see her anyway?

IM - it's so confusing I know. It's really tricky for me to say what to do as we all get different results from different things. I do think, that for me, seeing Toni was huge relief. I finally met someone that gave me confidence that they could help and she really has made a difference. Having said that, I also am sticking to the diet too so my aim is to gradually add things back in. Will the urologist run the tests no matter what you decide to do? It certainly doesn't sound like a normal overactive bladder...surely you wouldn't be waking every 2 hours with that?

I'm hoping L&S is around as she has been dealing with all this for longer and has lots of guidance I'm sure.

Yes she has booked in the ultra sound test but no more after that unless I take the tablets but am sure I can convince her otherwise.It was amazing today for 3 hours I felt normal again so hopefully this is a sign of things to come.It's back now but I know it can go again.
Think I will see how I feel next week and then decide if I want to see Tony.At this stage anything is worth it and I don't have to mention it to Deborah.

no you don't have to mention it! So great you had a few good hours...hopefully that's the start of things changing for you. Also remember that a lot of people get fluctuations with their menstrual cycle so it's worth keeping a diary to see if there is a pattern (then you don't feel so down if it comes back for short times as you can see the reason why, if that makes sense).

how is everyone? Irish - have you had any more pain free time? I had a flare which has been really frustrating as I can't work out what's triggered it. Thankfully things are starting to calm down now.

Hi hellsbelles

Not really it does go for an hour or 2 then back again very frustrating......I wish it would all just go away it is horrible. Went to Toni yesterday she is very nice and staright talking. She said number one cause anxiety, number 2 immunue system and then maybe my back. God it is hard to accept I am doing this to myself but she said I am soooooo stressed my pupils were dilated, I know I can feel it, its horrible. Its like chicken and egg, I want this to go away but am soo stressed about it cant calm down and if I dont calm down it wont go away.
Today I am trying to be more postive and optimistic that what I am doing will work. The diet I find very hard but she said I have to stay in it for now. I said to Deborah I wasnt feeling any better and she said a week is not long enough to change my whole body dynamics!!!

I feel I need time off work but with all the time I took last year being sick for 5 months with flus and post viral fatigue I feel really bad about it and people are talking about me being sick all the time with these odd illnesses but I need to relax and how can I do this in here.

Glad to here you are back on track hopefully I will be getting there soon.

Irish - at least you are now getting small time with no pain. It is a frustratingly slow process I know. Toni & Deborah have both reminded me that it took at long time for my body to get to this state and it'll take a while to fix it. So I'm trying very hard to be patient but like you I just want it to go away and get back to normal. Did Deborah give you anything to help with the anxiety? She give me some herbs which were pretty good and Toni's treatments always chill me out! I am a total stress head and I know it makes all this worse.

Even at my worst though I do just carry on with work and obviously looking after the kids. In a way it can take my mind off constantly thinking about my bladder (and keeps me away from google which is my worst enemy!). Did you start keeping a symptoms diary yet? I really think it can help.

As for the diet - it's bloody hard I know. But it is a very healthy way of eating once you get used to it and you start to find ways to make it more palateable!

Hope you get some more pain free time tonight and that it gets better and better each day.

Yeah she gave me stress pills which I take but they don't really calm me down as I am on such a high level it's frightening.Guess you are right it has taken me 20 years of anxiety disorder and a long term illness and many mote besides to get me to this point so I guess it will take a bit of reversing to get it back to normal.
What I really need is a plan for relaxation and how I
Am going to relax.Like my sister said you were relaxed for 5 mins today how the hell is that helping.I need to refocus my thoughts and that's hard when i am in work.My mother is coming over aswell next week to help me out with cooking and stuff,so that will kick start my relaxation aswell.
I don't have kids but was planning to start trying later this year,hopefully can still do that and this doesn't effect my plans too badly.I guess I should use that as a focus!

IM - some IC patients actually find pregnancy helps! (but maybe/hopefully you don't have IC anyway).

I guess everyone has their own ways of dealing with stress. I used to get stressed about being stressed! Has anything helped in the past?

Am starting to get somewhere with this.My mother has come over and been a great help.Mine is definitely related to anxiety.I am starting to relax and the feeling is becoming less strong and not there all time.
The doc gave me diazepam for 7 days and that is helping aswell.
I still have a long way to go but at least I can see the light at the end of the tunnel.Am seeing Toni today which I am looking forward to as she will help me to relax aswell.The diet I still find very tough and has given mean nasty side effect of bacterial vaginis.Think is because Deborah still hasnt sent the probiotics stuck in customs still.Have had to buy some myself again.
I have to be committed now to getting rid of my anxieties as this has been a massive wake up call as to what anxiety can do to the body,it's unbelievable.

Im it really sounds like you will beat this. Like you I think that mine is made far worse by anxiety and perhaps if we both view this as our wake up call to
Learn how to control stress, things will
Just get better and better. And perhaps also it will prevent stress from doing even worse things to our bodies. I'm just on my way to see deborah now actually. Hope you have a great treatment with Toni . She did an amazing treatment for
Me on sat. Please excuse weird capitalisation. Im using my phone and it's got a mind of it's own.

My gp has put me on 100mg of trimethropin long term to see if that helps after 2 more bouts in last 4 weeks. Have also got a urology appt next month.

Hey everyone, apols for prolonged absence! RL things intruded again; I haven't been on MN for a while!

Went out to see amazing specialist in LA (Matia Brizman) about six weeks ago (combined with work trip to defray costs!); have been on her regime now for four weeks (took a while for herbs to arrive) and have seen further progress. Her view (which makes much sense to me) is that it's an intestinal disease that ultimately manifests in the bladder (I've had years of IBS, so this definitely fits in my case), and it's triggered by a gut imbalance - same theory as Deborah Grant et al. But she's been treating it for getting on for 20 years now, so has loads of experience. I still have some residual symptoms (a bit of irritation and external soreness) but my frequency's now reliably 3/4/5 a day, the irritation is slowly improving, and I can bank on being able to do things. Her diet in the beginning is SUPER strict (it's on her website: www.icama.org/iaic-diet) but she's just moved me up to her list two, which is exciting! Just following the diet made a huge difference for me.

IM, I'm so sorry to hear you're suffering too - anxiety does make a huge difference. Toni treated me for that and it definitely helped. I used to have terrible anxiety-insomnia, but now sleep like a baby (and only need to get up to pee once a week!). THis is actually really important, as sleep helps healing - so it's a virtuous circle, kind of thing. Here's a link to a recent blog post Dr Brizman wrote about anxiety - there's a book recommendation from a patient of hers:

www.icama.org/blog/mbrizman/2011/06/10/anxiety

Viva, how are you getting on? Have they tested you for infection, or are the abs precautionary?

All my msu come back neg, as have swabs. So the ab are a precaution to try and prevent another bout. Funny thing though is that ab have sorted out the symptoms every time I've had a flare up but msu is always neg so no infection. So why o the ab help?

Viva - some antibiotics act as an anti inflamatory (I believe) which is why it can feel like they are making a temporary difference. I really do wonder why drs are so keen to prescribe them when they haven't found an infection. My dr did the same.

L&S - it's great to have you back! thank you for posting that list - I was going to ask you how the Matia diet differs from Deborah's. It's so encouraging to see her aim is to get you back to normal eating (except for the sugar and alcohol!) I can see that nuts are not anywhere on the early lists and I'm scoffing them at the moment...however as I'm feeling pretty good I'll just assume that they aren't a trigger for me!

I had another treatment with Toni - she said my back is definitely contributing dramatically to my symptoms...apparently my back was very very red when she treated it.

anyway - I hope everyone is having good weekends. L&S 4/5 loo visits a day is miraculous! I am down to about 8 now and that feels amazing to me already so I can't even imagine getting beyond that!

Hi,

I ve just finished reading this thread which I found very informative. Basically, I have always needed to use the loo fairly frequently but never thought much of it, until I had a uti about a month ago. I went to the GP got anitibiotics as usual and waited, it got better but never felt completely healed. Since then I am using the loo more frequently, and I have had some burning pain, pelvic pain and a feeling like I am never really emptying properly.
After much googling I found IC, and became terrifed after reading, yes, the US IC network stories. The stories made feel as if my life was basically over as I knew it, and then I found this thread which has made me feel so much happier. There is hope!

I started D mannose a few days ago and I think that has helped and I am trying to follow the IC diet also. Just wondered though how long before any of you noticed a difference in your symptoms after starting the diet? I have ordered some prelief also as I have a big family celebration at weekend.

turnwest....so glad you've found the thread (but not that you are having symptoms!). Those forums are horrific aren't they? I was playing all sorts of horrific scenerios in my mind after rading them.

I'm racking my brains trying to recall how quickly the diet worked. I think it was slower than I had expected. I know they say on the sites that it can take 6 months to see any difference but it was certainly sooner than that for me. I would hazard a guess at a fortnight. I'll try and find my symptoms diary and give you a more exact answer...but I know it's different for everyone. Having said that, when I first started I wasn't as strict as I could have been and I think that slowed down progress.

It sounds like you are very very early into this and the more I read (and crikey I've read too much!) the more I understand that discovering and controlling this quickly seems to be the key to getting better. There are peaks and troughs...you start feeling brilliant then you have a bad day or two (which sends you in the spirals of panic!) but soon enough the good days are in the massive majority and hopefully in the future the bad days are gone!

Thanks for replying hellsbelles and keeping this thread alive, I was so upset at the weekend but discovering this thread and reading all the posts has made me feel much better.

How are you feeling now? Are you still seing Deborah Grant at the Hale clinic? Have you reintroduced any foods?

The main thing I am worried is the pain, I read that it can get really bad and that terrifies me. At the moment I am going every hour doing the day and a couple of times at night, slight burning feeling when I do go and sometimes on the loo I have to wait a while ( I am sure my pelvic floor muscles are too tense), also I get mild stabbing pains right down at the bottom of my bikini area (not sure if that is IC or maybe pelvic floor spasms)

Anyway hope everyone is having a good day.

turnwest...try not to worry about the pain side. I have never got bad pain and it's certainly not got worse since I've been watching my diet and seeing Toni Tucker (acupuncture) and Deborah Grant.

There seems to be mixed information about how it progresses but I was at a lecture last week and the consultant was very reassuring and suggested it doesn't necessarily follow that it's a progressive disease.

I think it's important to remember that IC covers so many different things (It's a general term)...the people that seem to be in terrible pain all seem to have suddenly got the pain rather than what you are describing (or what I have) - also historically people were much slower getting diagnosis (I can't recall the average but I think it's about 4 years) so were not getting early help...you may or may not have this. It's very possible teh antibiotics have just irritated your bladder and by laying off bladder irritating foods for a bit you'll go back to normal soon enough. Have you had a chance to talk to your dr about this yet? Has he/she been any help?

I have introduced a few things...but nothing terribly exciting (rice pasta?!?)...however it really does get easier and you find ways to adapt your diet. I was really thrilled seeing the post from L&S about how stuff was re-introduced as it really does seem like you can work you way back to a normal diet!

It sounds like your doing really well, fingers crossed that you get back to normality soon.

Ive had a visit to the gp today, and it was actually quite good. Thought I would get fobbed off with antibiotics but she agreed with me that it did nt sound like an infection and she thought my bladder was maybe just inflammed or overactive. She's sent my sample off to be cultured to rule out an infection and I have to go back next week for the results and an internal exam, so overall I was quite pleased, she seemed interested in all of my symptoms. Most importantly I spotted a book on IC in her room so taking that as a good sign!

Hope you ve had a good day, I think the worse thing about this thing is my obsession with my bladder, it's all I think about all day.

turnwest, it sounds like you have a really good GP so that's great! Also I know it's a cliche but the stress of this makes the symptoms far worse...so once you start to see small improvements you'll probably relax a little about it and that in turn will bring more improvements.

Anyway fingers crossed it is just a temporary inflammation (which it easily could be) - please do keep us updated on the thread.