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.

She's perfect.

Beta - that's shocking, what the hell did he think he was doing?! Defies belief doesn't it?

BeenB thank you so much for your detailed reply. I'm on the run right now but will be back later on to fully follow up to everyone.

I just remembered that I too had cut out tap water for a very long time, and I believed this was helping me too.

I also came across a lady named angela kilmartin on my research. She suffered years of cystitis and went on to write books about it. This might help some people.

HellsB, I think prelief sounds like a plan. I hope you are feeling better x

I've had two days now that seem much clearer so I'm really hoping I haven't got IC...though I am aware that it can come and go...also I've been very good about diet.

One of my MN mates has pm'd me about it all...she's suffered from it terribly and has now got it completely under control - so that makes me not fear it as much.

Indigo - she said the key for her was the book you mentioned...she followed it to the letter and it worked for her.

sorry - just one more question...Indigo & Beta - did you have to get up and wee at night if you were having a 'flare'?

Yes, an awful lot, I actually forgot about that one! Lots of wee in the night....

hells - well I went to try and get some Prerelief from Boots and they don't sell it. They had never even heard of it. I'll try my local pharmacy who are a bit more clued up.

Yes I do get up at night a lot. I dont eat at all in the evening which helps. Typically, if I have had any alcohol at lunchtime or tomato I have a lot of bladder pain which wakes me up. My bladder is never full though.

I had to go for au unrelated health check recently and blood was detected in my urine in the early morning which happened to be the day after a bad flare up. A few days later I had another urine test and it was clear - but I was having a 'good' day.

Beta - you can get it mailorder from nutricentre - I've used them for other suppliments and they are good.

Thanks both - I keep seeing that as one of the main indicators of IC and as yet I'm not having to do that...I'm sorry to hear you both are - you must be exhausted.

Thanks. I'll give nutricentre a ring. I also read they are cheaper to buy direct from the US which I might try if they work.

wow this thread is very interesting. I have been diagnosed with cystitis since I was a bout 5yrs old and it flares up regularly, was very bad when I waqs about 14 and had all manners of tests that showed up a tight tube and oversized valve from bladder to kidneys, this was corrected and also discovered and extra shelf in my bladder.

the cystitis was never really taken seriously and still is not I have had long term antibiotics (for a year at a time) prescribed variouse times. Iv never heared about food irritants ever from my gp or any consultatnts. Im going to look at some of the links here as This does cause me alot of problems from time to time, im now in my 30's so cant belive for the last 30 years I have had no idea some of these solutions explinations exisited.
also very curiouse as at times due to cramping, I have also felt I possibly have ibs, but seems like its possibly bladder pain. TMI I know, but some times I get a alot of irritation, cramping and discomfort and then have a very large bowl evacuation and seem to then have alot of uriunary problems, urge to go etc. can that be linked then?

tomhardy - yes bowel symptoms are linked to mine too when it is very bad as you describe. I noticed that in the early days of having IC which made me think it was 'something to do with food' even before I had any idea what it was.

The bowel and bladder symptoms are definitely linked in my body but the symptoms are so infuriatingly variable and non specific between patients that most doctors seem mystified.

bloody hell, im so glad I stubbled along this thread. my mother always thought they where barking up the wrong tree, she thought I either had crones dissese or was diabetic due to the other symtoms I presented, like you say are very variable and non specific. thanks been beta, feel like a weight has been lifted. I hate taking antibiotics as it does not cure. sometimes I do run a high temp as a result and so they are helpfull then, but most the time infection does not show up on my urin tests, just traces of blood and protien.

Tomhardy- that must have been so hard suffering for so long and not getting any answers. I've been doing a lot of research in case I have got this (and even if I haven't, something is up with my bladder so what I'm learning will help) and it seems there is so much that can be done to ease symptoms. As you mention the links are all in the thread.

hellsbells thanks, it seems I have some answeres already, so a big thanks for starting this thread. im going to carry on looking on the internet and will def look at my diet etc.

I hope you are better soon and find a way to manage your symptoms.

I'm not kidding, Mumsnet is such an amazing resource!

I note that uva ursi was mentioned earlier on, I too tried that, and cranberry tablets and every other bloomin herbal remedy in holland and barrett, and nothing made me any better. I think with IC, it's a case of trying what works for you. For example the IC website states that chocolate can be a trigger food, luckily it isn't for me.

Hellsbelles You sound completely like me when my troubles all started. It co-incided with me coming off the pill as well as me doing a juicing diet, but I believe it was the overloading my body with the high potassium/fruit acids that caused it. But, in saying that it has made me crazy in the process of discovering what the problem was. The least little thing and you are over analysing what it could be that is upsetting your bladder. Also - and I say this tongue in cheek, but with a little seriousness - can you think of anything that you are 'pissed off' about? You don't have to share, just a question for you to ponder. I stopped having baths, only showers. Watched which sanitary products I used, ie no tampons - too painful. I used to think they were squashing my urethra and this would make me need to go.

VivaLaBeaver getting a scan is a good thing. I hope you are alright.

Tomhardy I am so glad you found this thread too

Something which I don't think anyone has mentioned yet is any pelvic imbalance. I mean to say that if you had ever suffered any fall, or trauma to the pelvis or back - this can actually attribute to bladder issues. I'm not saying this is the cause for anyone, but an avenue worth persuing if you feel it may pertain to you.

Also, and I must have written 2000 words in this post is what I was originally being tested for - a urethral diverticulum. When urodynamics failed to see anything wrong - after bladder retraining (despite being in constant pain and desperate urging 24/7), antispasmodic bladder drugs etc I was advised that the Urologist thought he may have found a small pocketed area in my urethra. I had 2 MRI scans and both were inconclusive, so I lead myself to self diagnose as IC.

Anyhow - for those of you who may be interested, more info urethral diverticulum

BeenBeta Thank you again for your words of kindness and support. I really wish that I was on mumsnet whilst I had the issues. In some ways I am still learning. I will look into the links you have provided.
I am keen to see how you get on with the prelief. This could be a whole new positive experience. From what I see it might allow you to enjoy some of the trigger foods? Maybe 2 glasses of wine instead of 1 with lots of bottled water?

Indigo - I'm hoping against hope that it's some sort of anxiety issue - I've been very stressed recently. I've taken to googling 'urinary frequency and anxiety' instead of 'urinary frequency and interstital cystits' as it's marginally less scary and many of the same symptoms come up.

I've had 3 good days now. I've no idea if it's the antibiotics, change in diet, or whatever. But I'm happy about it.

Did you ever try Aloe Vera (a special one from the US) here looks quite interesting!

Hey hells - very glad to hear you've had three good days! I was diagnosed with a mild form of this back in Oct, and did similar to what you've done - MUCH research. I'm now seeing an acupuncturist and a herbal medicine person and follolwing a v strict diet. Symptoms wax and wane but frequency/urgency much reduced - and I have pain (more like discomfort really, and lots of it external) but it's MUCH easier to bear than that constant sense of needing the loo. I think mine was actually trggered by anxiety! V stressful few years. Glad to hear your friend's got hers under control (for my own sake as well as yours!). DM me if you want to talk more?

no googling for a little while...I promise

Loveandsqualor...that sounds like a great route to take. It's amazing what anxiety can do to the body isn't it?

Isn't it just? The herbal medicine person I've been seeing reckons the underlying cause for me (it's multifactorial, so can be different for everyone) is a yeast overgrowth, due to years of antibiotics, 17 years(!) of the pill, and endless ibuprofen for headaches. But diet can contribute, too, and stress (which produces insulin in the body, on which the yeast can feed) can be a huge factor. And I'm convinced in my case it was the trigger (mine came on at a literary festival where I was chairing events - I'd been working insanely hard in the run up, and the thing itself was pretty stressful too - I thought I was just needing the loo because I was nervous about being on stage!).

Really hope you don't have any relapses, but if you do - and especially if you're in the London area - CAT me, as I can give you the info about the specialists I've seen. Docs were useless for me, TBH

Love&squalor - actually feeling a bit crap now - can I PM you (no idea how to cat!)

Hey hells - of course. Do you actually just want to mail me? Address is sarah . crown @ guardian . co . um (just totally outed myself, but hoping not too many people will be on this thread!) It is horrible and SO scary - and having just been through it I want to do anything I can to help! I'm feeling much better than I was, but it's taken a while and some serious dietary changes - but in the long term my herbal medicine woman thinks I should get back to a normal diet. Anyway, today I've only been to the loo three times. And tho there's still a bit of discomfort, it's improving. Really hope I can help! Xx

Ps sorry it's taken me ages to reply - ds has flu and I spilt water on my laptop!

Pps that's uk in the email address, obv...

love&squalor...just got your pm...and have seen this. It makes such a wonderful difference to talk to you about it instead of going on the IC forums which are just so horrifying.

Will definitely take your advice and see the Hale Clinic lady.