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 Turnwest,

I would like to agree with hellsbells stress does make this way worse and for me as you have probably read is the main factor. I too was absolutely obsessed with my bladder to the point I couldn?t even sit down anywhere or relax anywhere as I was constantly thinking about it and absolutely terrified of the feeling of needing to go to the toilet, I had developed a phobia of it.
Now I am starting to feel better on Monday I had a great day and a good night?s sleep felt so positive and my panic had gone down. I still had the feeling of wanting to go but it comes and goes every few hours. But then just like Hells said I had a really bad night on Tuesday and then Wednesday was horrible so tired and couldn?t cope with it panicking all day which is actually worse then the feeling of wanting the bathroom ( as it went away in the afternoon )for me. I went to see Toni even though I was shattered and she made me feel better.
Took a sleeping table last night and slept better and starting to feel more positive again today. I have been on the diet now for 3 weeks and have seen some improvements like it going away for hours at a time and then coming back but Toni said it is an up and down thing and not too let my emotionas get the better of me, it hasn?t been helped by my developing bacteria vagniitis but Deborah said that is all part of my problem with the imbalance of the gut flora and the diet plus now I have the probotics should help this.
I start CBT therapy on Monday for the panic I am having and I am going to get rid of my panic for once and for all as it is ruining my immune system which is causing all these illnesses ( last year flus, winter vomiting bug, post viral fatigue for 5 months ).
You have got to fill you head with positive thoughts as it is the quickest way to health. It is hard and some days I think why do I have to deal with this bloody thing I want my life back to drink and eat what I want and not be worrying about the toilet all day or will I sleep tonight but I have got to give it time to heal,
On the pain front I don?t have any did have 3days at the beginning of searing pain at night but that has gone now, just the pressure feeling of wanting to go when I certainly don?t need to.

Hi, how is everyone?

I ve had a good weekend actually, went to a family celebration, was out for over 4hrs and only used the loo twice, which was pretty good for me. Then today it feels not so good, a twingy feeling in my bladder area, nothing major but enough to remind me that somethings wrong down there. Hopefully everyone is having a better day than me anyway!!

turnwest...it's great news that you felt good at the weekend. Just try to remember that - though I know it's hard when you are feeling rotten.

just checking in. I've had a few dodgy days. Nothing as bad as I originally got but it does always get me down...which is bonkers because I'm better more than I'm not (if that makes sense!)...I guess it was just frustrating after such a long run of feeling totally normal.

IM - I saw Toni recently - she is wonderful isn't she? I've met some of the other ladies she's treated and she's really worked miracles on some that were suffering terribly.

Sorry to hear you've had a few bad days helles. Hope things are improving.

Touch wood, since I've been on the prophylactic low dose antibiotics I haven't had any problems. Been four weeks now. I've got my first urology appt next week.

Viva - that's fantastic news! How wonderful if you've knocked this on the head so quickly. Can you let us know how it goes with the urologist?

I've got an acupuncture appointment later today so hopefully that will sort things out for me. having said that I am able to get on and do normal stuff...just with nagging discomfort in the background.

Hope the acupuncture helps.

I'll definetly let you know how I get on with the urologist. I'm sure that the only reason that I'm symptom free at the minute is because of the antibiotics. GP said I can take them for six months. I think I'm just worried that as soon as I stop taking them it'll all come back.

Viva - thank you! I think it has made a difference...at the very least it relieves the panic I get about re-appearing symptoms!

I used to see a difference on antibiotics (because of the anti inflammatory properties) but never a complete disappearance of symptoms...that is a fantastic sign and hopefully means you have got an infection that can be fixed (!) - how odd wishing for an infection - I think this is the only instance where we do!

I'm not sure if I've mentioned but some bugs don't show up in conventional urine tests and there is a test called a broth culture which can pick up the previously undetected ones - this seems to be a controversial IC thing but who knows?!. I"m off out now so haven't had time to read this through but google bought up this old thread on one of the forums about it [[http://www.ic-network.com/forum/showthread.php?t=9607 antibiotic treatment/broth culture). May be worth a read?

Hiya,

Hellsbelles, sorry you ve been feeling bad, I know how you feel. I had a fairly good week so decided I did not have IC and as we were away this weekend proceeded to eat whatever I fancied all weekend, ending last night with a huge bowl of my favourite fruit. Today, I am not feeling so good, I am not in pain, just a lot of twinges and discomfort. I ve just had some d mannose and lots of water and it seems to be helping, don't know why it's not a uti, I did a urine test.

I ve bought some marshmallow tea, but have nt dared try it yet. Anyone tried marshmallow tea? I ve been drinking nettle tea, though, it's supposed to have good anti imflammatory properties.

Yes, I've seen you mention broth culture before and I did mention it to my GP who was very uncommital about it. I got the impression he didn't know about it. Thanks for the reminder though, will mention the test at my urology appt this week.

turnwest - I'm like you, hoping it's not then thinking it is...who knows?! I keep reminding myself there is such a thing as an overactive/sensitive bladder and fingers crossed it's just that.

In the Catherine Simone book she strongly recommends marshmallow root tea - I started it and then my herbalist banned me (she never lets me have anything not prescribed by her!)...but I will try it again in future.

Viva - unfortunately I think it's a very expensive test that is done privately...as far as I'm aware it's not available on through your GP...but certainly worth reading up on in time for your urology appointment.

I'm feeling much better today...hurrah!

Glad your feeling better hellsbelles, does accupuncture really help? I might try and find s good one up here.

I ve tried the marshmallow tea and so far so good, think it helped me today, was having more frequency and a little discomfort and it seems to have eased it. Fingers crossed.

I ve ordered some cystoprek from the us as well, has anyone tried it? It's supposed to be a natural alternative to elmiron so thought I would give it a go. I ll let you know what happens. Went to the Gp and my culture did not grow anything, all was normal so Gp says I have definitely not got Ic. I think I must have Ic as I have Uti symptoms but no Uti, and I thought I had found a good Gp but now there is no Uti she does nt seem interested, she suggested doing a blood test for coeliac diseases but thats it. So, I guess it's left to me to find my own cure. Hope everyones feeling good today

Well I'm back fro a really crap urology appt.

He said I don't have any infections, never have had. I mentioned broth tests, he didn't seem to have heard of them and said the tests at the hospital would pick up an infection and repeated I don't have one.

He couldn't answer why the antibiotics work.

He said I have an overactive bladder and need to retrain it by putting off going to the loo. I totally disagree with his diagnosis, I have no urge incontinence at all. When I'm busy at work I can put off going to the loo for hours. I never have any incontinence. I think he's talking rubbish.

I pointed out the symptoms aren't there all the time and he said that an overactive bladder can come and go.

Anyway, he did say that the urine samples have shown signs of inflammation so he will do a cystoscopy but that he doesn't expect to see anything. I was so pissed off by now I didn't ask him why if there is no infection do I get leucocytes, blood, nitrites showing up on dip tests. But I suppose this is related to the signs of inflammation/high White blood cells showing up on the urine lab tests. So at least I am getting a cystoscopy.

He rounded it off by asking if I thought my weight was in a good area. I told him by bmi was 30 and he said my weight isn't helping. Great, thanks for that. Feel really hacked off now.

blast - I wrote a huge long post and then managed to lose it.

Viva & turnwest - how frustrating that you've both hit such a brick wall with your GP/urologists. The lack of infection in your urine is surely a sign that things DO need looking into - I find it unbelievable that despite so many people suffering there is so little knowledge in conventional medicine. I went to a lecture by steve foley and he explained that there are very few urologists with an interest in IC as it's not an easy 'here's a pill/here's an operation' type thing and that puts a lot of them off (it takes a while to find the right treatment plan for each person). He is worth talking to if you can get a referral (he's national health)...he seemed very knowledgable. I think I'm right in saying you can request a specific consultant now can't you? Personally I am going down the 'alternative' route as most of the treatments on offer from conventional medicine don't really appeal to me.

Viva - urghhh at your urologist. I've been googling IC manically for months now and I've never seen a connection between weight and symptoms mentioned...so how very dare he! Is he offering to do the cystocsopy with dilation under general anaesthetic? That's the only way to diagnose IC...you can't do it with a normal cystoscopy.

Turnwest - yes I find acupuncture a huge help but the lady I see, Toni Tucker, is a specialist in bladder issues so that's probably why. She's based in maidenhead...if there is anyway you can see her I would strongly recommend her. If that's not near you do you want me to ask if there is anyone she knows of in your area? I think they tend to know of other good practitioners. I can't wait to hear how you get on with cystoprek...and three cheers for marshmallow route tea helping.

I'm really close to crying now. No, the cystoscopy will be a normal one where I'm awake.

He never mentioned ic to me. Of course I went into White coat syndrome and never mentioned it to him after he said I had an overactive bladder. I'm so bloody cross. Hells bells you would be a better urologist than mine, you certainly seem to know more.

I've been googling since I came back. I don't have an overactive bladder, I only go to the loo five or six times a day. If I'm at work and it's busy and I feel I need the loo it's sometimes a few hours until I get to the loo. So I can manage to hold it ok.

It's just when I get a flare up I feel like I need the loo a lot, have a lot of bladder discomfort, etc.

So what do I do now? Go for the cystoscopy and see if he sees anything? Or do I go back to the gp and say I want a second opinion. I suppose when I go for the cystoscopy I could try talking to the urologist again and saying I disagree, etc.

Hellsbells - if it's ic, would I definitely get pain on urination? I don't have the burning, stinging sensation when I wee. But I have general abdominal pain all the time, not worse on passing urine. I have a slight tingle on passing urine but nothing like the agony that I've had in the past when an msu has been positive.

Viva - I'm sorry you are getting upset and I can totally understand. I know how it just feels all so frustrating and never ending. I think it's unusual for something to be so misunderstood by medical practitioners so this is one instance where you really do have to do lots of your own research and I know that's horrible. I just wanted instant answers when I started getting these symptoms and no one seemed able to give them to me (until I started getting such great support from L&S and others on this thread).

Please also remember that IC is a term that covers a whole range of symptoms (and yes it can be without pain...I don't get pain really)....and also is probably caused by a number of different things in different people. It's a catch all - so although when you google it you often come up with horror stories remember there are millions of people that have 'IC' that have just managed to find whatever it is that triggers their reaction...and have controlled it - they are just too busy getting on with normal life to post on forums. Does that make sense?

If you really don't like or have faith in this urologist perhaps you should ask to see Steve foley or someone else who specialises in IC (even if you don't have it - which is entirely possible, even back problems can cause bladder symptoms (!) - they'll know how to rule it out).

blast have to go as DH is fed up of me not giving him any attention. Please please don't worry and stress about this...everything feels worse with stress (it certainly has quite an effect on the bladder). Even if you did have IC it's something that can be controlled and made tons better than you feel now (and many people go into remission completely).

Thanks Hells. Have had a think about things last night. I don't have much faith in this urologist but have decided I'm going to give this cystoscopy a chance. I don't know what he's looking for/not expecting to find but I'll let him have a look. Seeing as I'm going to be awake for the proceedure it'll be a good chance for me to make my feelings known while they're doing it. So I will tell him that I don't think I have an overactive bladder and my reasons for this.

I have more faith in the fact I'm currently taking this low dose antibiotics for 6 months. I'm hoping this cures me.

If it doesn't then I'm definetly going to ask to be referred to Steve Foley. Thanks for all the info its been very helpful.

viva - that sounds like a good plan. The cystoscopy you are doing will at least rule out anything else (like cysts etc) and it's far less invasive that the one they do for IC. Fingers crossed you get the answers you need.

Hi Viva...I've been thinking more on this and it really is right that the urologist is doing the normal cystoscopy first. It is standard and although it can't diagnose IC it rules out other causes of bladder problems. So perhaps that is what he meant by 'I don't expect to see anything'...as he knows he wouldn't see IC with a standard cystoscopy. It's probably better he is doing this before the more invasive procedure that would diagnose IC.

That's good to hear and pretty much what I'd sort of thought myself. Wasn't 100% sure but thought at least if I had it done then could say well we know it isn't xyz.

just checking in - as always I hope the silence is because everyone is well! I managed to have a glass of wine this week with no ill effect! Never thought one glass of wine would make me so happy!

Good news on the wine Hellsbelles!

I went to a BBQ on sun and ate pretty normally and did not feel any different to usual so thats good. I am trying to decide whether its worth continuing with the Gp, I dont want lots of invasive tests so I might just wait it out and see if my symptoms get any worse or not.

My cystoprotek has arrived from the US but I am waiting to try it because I am hoping that I might be pregnant. I know, probably not a great idea with my bladder problems, but I am not getting any younger so.... Keep your fingers crossed for me!

Hi,

I dont know what to do anymore, symptoms have got much worse this week, it's hurting a lot when I use the loo and there is a burning sensation pretty much all the time whether I m on the loo or not, d mannose and marshmallow tea not working now. It's getting worse daily and I am worried that pretty soon I won't be able to pass any urine on the loo at all, it's so painful starting a stream. I have no idea what to do anymore, I feel so alone.I ve done a home urine test at home and no bacteria showing just blood, I'm not pregnant either. Can anyone help me??

turnwest - I'm so sorry it's got worse. How has your diet been? Have you been fairly strict on that? Can you think of anything that may have triggered it? I personally find big differences due to hormonal fluctuations...it can get terrible just before my period...whereas I have heard it gets worse for other women at different times of their cycle.

It sounds like you need more answers from your gp...where are you up to with the urologist? He was going to run some tests wasn't he?

Sorry for all the questions...I just find that sometimes if I ask myself loads of questions I can work out what's triggered it (and sometimes I can't).

Please don't panic...I know it's horrible and dark and depressing but there is every likelihood you will find a cause and be able to get feel better.