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 Hellsbelles unfortunately I live in Ireland so my herbalist is in Galway City, probably no good for you, but I really urge you to try and find a doctor who is also trained as a herbalist cos that's what worked for me. My doctor has a website called www.healthandherbs.org .Her name is Dr Dilis Clare. Maybe she would do a phone consultation? DEFINATELY worth a try. I know her shop will post remedies if they are ordered by phone. I know you don't know me from Adam but I really urge you to at least give her a ring, she may know someone similarly qualified in your area or lead you in the right direction if she can't help you herself.

reckless...that may be a little far for me to go! Thanks so much for giving me all the relevant details and I will certainly think about it. I am already seeing a herbalist so I should probably persevere with her for a little. I've only been on her prescribed stuff for about a month.

Hi,

I've just come across this thread but think I have this too and need some help with coping. Feel in a bit of a blind panic at the moment. I had a 6 week episode last year of frequency weeing and a bit of pain although not too bad. The first time I went to GP's I had a trace of an infection and got AB's but the following 5 weeks my dipsticks were all clear even though symptoms were the same. After 6 weeks things seemed to settle down although never went totally back to normal - was still weeing a bit more often and was 'aware' of bladder IYKWIM.

3 weeks ago it all kicked off again but much worse. Loads of pain, weeing literally every 20 minutes through the day and every hour through the night. I'm hardly sleeping at all due to combination of pain and needing to wee (sensation starts about 5 minutes after going to loo). Does anyone have any tips about dealing with the weeing in the night as this is getting me down the most?

Any help/ advice gratefully received as scared I'm going to be stuck like this forever. I'm going to read through the thread in detail now and try and note down everything that's helped others.

Thanks

Hey Geordiecat,

First of all, poor you. It's absolutely fucking horrible. I was just the same as you when mine all kicked off - that horrible feeling of needing to wee CONSTANTLY. Was getting up every hour in the night, knackered, scared and miserable.

So ok, the first thing to say is that I'm feeling so, so much better. Up now once a night, if at all; have been to the loo I think three times today. Still a bit more sensation than I'd like, but working on that - rarely feel any pain. It's taken me six months of work, but I have been improving all the time.

The first thing to do is to look at your diet - cut out ANY potential irritants - caffeine, alcohol, acidic food, anything spicy. No fruit juices If you smoke, stop (terrible for bladders). At first, I'd drink only water, to be honest, and stick to Evian (high pH, and low potassium, which can be an irritant). And drink LOTS - 2l a day (don't get tricked into drinking too little to avoid needing to go to the loo). As an immediate sticking plaster, you can try a tsp of baking soda in water, to calm things down.

Take paracetamol for the pain; that's the least bladder-irritating painkiller.

Use a hot water bottle on your stomach and between your legs to soothe and calm everything.

Then I'd also recommend taking herbal baths: a big handful of baking soda, in nice hot water, plus some essential oils (couple of drops of tea tree to kill any bacteria; some lavender or something else that relaxes you).

Hopefully, this should calm things to the point where you can get some sleep.

After that, there are various strategies you can use.

You need to consider whether you want to go for a cystoscopy (camera in bladder) to confirm your diagnosis (and of course you should see your gp to rule anything else out). There are various drugs drs can now prescribe for IC, so obviously that's one route.

However, I think most of us on here who've had results have gone down the alternative/complementary route - basically, it's v poorly understood, but it seems to be the case that IC is a systemic thing, rather than just a bladder problem, and therefore needs to be treated holistically.

I've been seeing a superb acupuncturist, Toni Tucker, who specialises in IC - but she's in Maidenhead, and I'm guessing from your name that you're not? (I'm from Newcastle btw, tho living in London now - hello!). She has people who travel from all over (even abroad) to see her, but realise this may not be an option! Whereabouts are you?

Also, I've been seeing a herbalist, and decided that in my case (it's different for everyone) one of the root causes is a yeast overgrowth (take this quiz to see if it might be an issue for you www.mall-net.com/cgibin/quiz4.cgi?quiz=crook.qa). I've been on a super-strict diet since January, and it seems to have helped hugely. I can give you more details if you like.

Must go now as have been working all evening and need to sleep before starting again in the morning , but I'll check back in then. You're not alone and we'll all help work out what the issue is for you and what muight work. It's just a case of trying things until you find what works for you.

Good luck for some sleep tonight

oh and regulars: good news! NOT PREGNANT! the blessed relief

and cabbage, just seen your PM, will reply tomorrow!

xx

ps Hells! Hurrah for the new house and the well-behaved bladder! How's the throat? x

Hi L&S,

Thanks for taking the time to write all that. It's brilliant to have so much good advice. I already feel a little calmer having something to try rather than feeling so helpless and hopeless.

I've started on drinking only water - tap water for now but I'll get some Evian today. Also going to get some baking soda and follow all your advice as much as I can. GP has referred me to urology so I guess they'll discuss cystoscopy then. I don't really do alcohol or caffeine much but I do eat a lot of spicy food and drink lots of fruit juices so they're gone for now. I'm hoping if these things calm the crisis down to the point where I can rest a bit then I can get myself togather to investigate the alternative route.

Just a quick message for now but I'll get back to you when I've tried a few things.

Thanks so much for taking the time to reply.

Geordie - sorry you are having to join the bladder brigade, but as L&S so rightly says once you take control of your diet it all starts to get a lot better. I was so terribly scared when it all started for me and I really needed to hear (from L&S) that it can get better - instead of scaring myself with all the normal internet forums!

I have nothing I can add to that wonderful advice from L&S other than I've been using tons of garlic in my food and brewing up chicken stock constantly (home made) and sipping on that throughout the day - which I really think has helped (this was prescribed by the herbalist that L&S mentioned). I've cut out gluten too (urghhh!) and stick with brown/wild rice for my carb kick. Sounds horrific really but once you start seeing a difference in your weeing (!) it all makes it a lot easier!

L&S - so glad you aren't - so all this recovery isn't down to pregnancy! How exciting. I have to say at the moment my bladder feels so normal...problem is I'm so tempted to cheat! I am seeing Toni & Deborah t/m so fingers crossed they allow me some new foods in!

Thanks for asking about the throat...I really was thinking I was going to have to get AB's (gasp!)...but finally today I've woken up feeling almost normal....hurrah!

Right - better get back to the boxes!

geordie - sorry forgot to say - steer clear of tomatoes (all types including canned)...for me this has been the hardest thing as I love Italian food.

I'm starting to wonder if I have this too. For the past couple of weeks I have not been able to stop weeing.

I'm knackered as I'm getting up so often in the night to go to the loo.

Have a doc's appointment on Monday but this is some really good advice here so I will give it a try. I think I already figured out the tomato connection after an especially bad attack after eating a salad.

I love coffee though, so that will be hard to give up. I feel really resentful that I should have to go without. Why can't my bladder just do what I want it to?

madonna - I think that is such a natural reaction...my view is that if I get this sorted now and allow my bladder to heal I hope that somehow I will get back to relative normality. But it does all feel really unfair!

I read a lot about something called 'prelief' here which apparently stops food being so acid...so when I get better I plan on using this before meals out etc...one of our other posters, Beta, who has suffered for ages from IC has found this helps a little (and he has tested it to the extreme!)

Just to add- if you are gluten free there are lots of other things you can eat- I am and do! Have been wheat free for over 15 years.

Most of the supermarkets sell pasta that is made from rice or corn- or both - in the allergy sections.

You can also buy gluten free flour if you fancy baking but make sure it is gluten free and not just wheat free- these sorts can have other grains in apart from wheat that contain gluten.

You can also get various gluten free breads- I buy one by Antoinette Saville- something like that! - which is not too full of chemicals etc.

You can also eat oat cakes and porridge as oats have little or very little gluten.

L&S - have pm'd you...had a Deborah visit today and just wanted to check something with you!

I hope I can join in your thread as I'm sure I have the dreaded IC.

I have PM HellesBelles, who has been so helpful to me.

I am currently into my third week of needing to wee constantly and having a full and swollen bladder. I can see in poking out under my skin.

I've found no relief so far and am going to try the gluten free diet.

Thinking back, when I first had a UTI three years ago, it started after I was prescribed anti biotics for my skin. I stopped taking the tablets but started then taking anti-biotics for another 18 months to get rid of the infection.

Last month my skin took a turn for the worse so went to the doctors and was given anti-biotics again which made both my knees swell to three times the size. A week later I've got this terrible bladder problem. Is it linked?

Am currently on 1000mg per day anti-biotics even though three urine tests have come back clear.

Really don't think I should be taking them. Don't know what to do?

I keep crying I'm a real mess. Even told DH last night to find someone else as I'm no fun for the kids anymore.

Matilda - welcome to our thread and as I've said I'm sure that between us all we will be able to find something that helps you cope.

Antibiotics really do often make things worse so that may well have been the trigger for you this time. Can you get some good probitotics (try to ensure they don't have citric acid and things like that in them). The sooner you can see you dr to discuss getting off the abs the better.

gluten free is one approach I've mentioned but the main thing is google the low acid or IC diet...that gives you the list of key triggers to avoid.

blast - got to go - toddler on the run. Back soon.

Quick Question - I now have Baking Powder and Bicarbonate of Soda. Couldn't find any Baking Soda.

Now not sure what to do with which one!

Brought some gluten free food, cost me a fortune!

Hope I can start feeling a bit better soon.

Thanks all,

Matilda

matilda - it's bicarb you need to use (not sure what the differences are - but that's the one I'm sure is correct) - just start with half to one teaspoon in a half (ish) cup of warm water (boiled and then cooled)...you can have this every few hours till things calm down.

Then when you are able bung a whole lot (I do about half a cup) in a bath with lavender oil or something like that - that often really helps.

For today until things start calming down I would stick to evian water and very bland stuff like chicken, brown rice, cucumber, cabbage, brocolli - that sort of thing. Boring but hopefully calming to your bladder. Though the problem is while you are having the antibiotics I think it will still be irritated by those (but I know you can't just stop them without talking to your dr). Also use lots of garlic in your cooking and olive oil. That's all good for your bladder. If you have time make some chicken stock up (just use carrot, parsley stalks, 1/2 onion and a chicken with a tiny bit of salt to flavour it). I found it really helped having cups of that throughout the day. I heated it up (with crushed garlic) and added in the chicken that had cooked with it once it was heated up.

L&S are you about? I know you will have tons more tips to help Matilida.

I am not sure about the garlic Helles. I read that anything onion-y is an irritant- I don't eat onions and avoid garlic like the plague.

Ditto brown rice- I used to live on rice cakes which are pure brown rice but eventually twigged that the fibre element was possibly making my bladder worse.

it's tricky as everyone is different.

But- just thought I'd mention it.

Thanks all. Have been drinking lots of evian and cam tea also pep tea so hope these are ok.

Haven't eaten much, not really felt like it. But will definately give the chicken stock a go.

Thanks again.

Oh and have stopped taking the anti-biotics today. I know I'm not supposed to but have another two weeks of them before I see the GP and keep thinking it's the anti-biotics that started all this off.

Cabbages...I'm pretty sure garlic is fine. It's on the 'ok' list of all the IC diet lists and it's on my list from Deborah Grant (the IC herbalist I see)...she asks me to eat loads of it!!

But you are quite right...everyone is so different...it's a matter of trial and error to find out what works for you. And something that is fine for one person can be a terrible trigger for someone else.

How are you doing now?

Matilda - can you call your dr on Monday to discuss the ABs?

Hey all, so sorry I've been awol again, and cabbage and hells I haven't replied to your PMs - so sorry - am in RL hell! Launching a big thing on weds of this week and have been at work all w/e; only just back now and am about to fall into bed.

But! just wanted to say quickly, Matilda - I took ABs when my thing first started, and when the first lot didn't work, the GP put me on two SERIOUSLY strong ABs, to be taken simultaneously, in case I had pelvic inflammatory disease. The whole thing just exploded. I felt AWFUL - not just physically (although all my symptoms went through the roof) but mentally, too - like I might as well just give up. I kept on them for five days before giving up - and within hours, I felt marginally better. It's taken me a long time to feel properly better, but getting off the ABs was the start. Obviuosly everyone's different, but thought my experience might be informative, if you're thinking that anyway. Do, do see your GP asap!

Must eat and collapse now but will reply properly to everyone as soon as I have a second! Here's to peaceful nights, one and all

xx

ps matilda, just reread your original post. I cried and cried. Low point was having to send DS off with exDP for the weekend because I simply couldn't look after him. It was absolutely awful. Wept in the car. Know exactly how you feel - it can and will get better. I'd seriously seriously think about the ABs, esp as your knees have swelled up. Bladder trouble is actually a side-effect of some ABs, so it may be as simple for you as just stopping them (have a look at the side effects of yours!)

gosh -it's quiet in here. I've been internetless, hence absence. I do hope the general quiet means that everyone's bladder is behaving and you are able to just get on with life. Matilda - is there any improvement? I can't recall how much time you had left on the AB's?

L&S - hope you are continuing to feel fabulous!

Beta - is prelief still helping?

And our other contributors...I hope the sun is making everything feel better!

I've been able to cheat a few times with little effect. Other than that I'm sticking pretty strictly to my diet and it's made a huge difference. I'm really not thinking about my bladder all the time - and my frequency is way down. there are blips and there can be the odd day (today in fact) where I'm aware of it all again and that scares me. But most of the time I'm back on track. Though I can't wait to start eating normally again!

Hello! How is everyone? Ive been deep DEEEEEP in work, hence absence. Hells, thrilled you're doing do well! I've been really good too - having a v small blip today, but otherwise excellent - agree about being desperate to start eating normally again! I'm too scared to try anything forbidden yet! though am DESPERATE for some fruit, sheesh.

Hells, totally know what you mean about feeling nervous when there's a blip. I'm taking the long view - I have days at a time where I'm not really thinking about it, so the odd day where I can 'feel' things a bit more is still a huge improvement!

Hope everyone else is doing ok?

L&S - so true - long view is the way to go. Also I think for me (and I know you've mentioned it before) hormones are an issue so different times of my cycle are worse. And it's quite possible it's like that for 'normal' people too?! But they don't notice (if that makes sense) because it's so infrequent....that's what I'm telling myself anyway.

Deborah has allowed me an apple a day! yipee. Otherwise i feel like I am just one big bowl of chicken soup. I seem to live on it (and rice cakes). I've also found I can tolerate lemon juice (again Deborah said I could test it)...so I mix that with olive oil on my salads which makes me feel slightly more normal! Apparently lemon turns alkaline when it hits the body so it doesn't always cause IC problems.

I too can't wait for proper normality though. My immunity is all over the place and I seem to have constant sore throats and bugs which I'm sure is down to losing weight/change in diet.

Anyway - DS is pestering for the computer. Have to go. enjoy the sunshine everyone.