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Help! Have I got interstital cystits?

(554 Posts)
hellsbelles Thu 10-Feb-11 21:39:58

I'm driving myself crazy over this one. I have a constant urge to 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.

BeenBeta Thu 10-Feb-11 21:52:16

I have had it 15 years. Its horrible. Ruined my life for many years.

Very badly understood by many GPs/consultants.

I had every possible test and treatment and finally was referred to a rsearch group at the John Radcliffe Hospital in Oxford. With their help, I discovered it is caused by eating certain 'trigger' foods.

Do read the COB Foundation website. The IC diet advice on the site is a good starting place to start figuring out what is irritating your bladder. Ultimately it is thought to be an autoimmune problem - your own immune system attacks your bladder epithelial cells and that response is triggered by your trigger foods.

indigobarbie Thu 10-Feb-11 21:53:47

I've had a camera in my bladder to check for things like IC, and I was told that they have to distend it to see the bladder wall correctly - the urologist described it as 'stretching the bladder'. I point blank refused them to do this as I said I didn't have a capacity issue. They didn't see anything wrong though - but I still had major pee issues.

Can you think of any foods or drinks that you have ingested a lot of before your bladder became irritated?
I did the j.v juice diet and on day 10 I had the same urges you describe. I've since discovered that foods/drinks high in potassium seem to affect my bladder, as does caffeine.

I wanted to pee all day long and I mean 24/7 I had the desperate urge to pee (it's awful), and the sensation is unbearable. I did answer the urge to pee even though tiny dribbles came out. That felt like some kind of relief, but in minutes the pressure and urge would build up again. I continued on like this for many months, even though there was no infection. Some days were better than others.

Anyhoo fast forward 3 years and on and off I still have issues, at the time of the major pain I was tearing my hair out. I ended up with constant pressure in my bladder and severe burning pain as if it was on fire. I cut out every drink except from water. Cranberry was a def no no.

One thing that did help was trying to wait and not pee every 5 minutes like I felt I wanted to. Drink lots of water. Maybe they will send you for urodynamics. The main thing is not to worry, I know how much this takes over your life. Another thing I can think to try is to completely relax your pelvic floor. This can sometimes lessen the urge. Apparantly as the bladder fills our muscles relax.

They can also give you tablets (i.e vesicare) which can calm your bladder down and dampen the urges. I'd go for the referral and have a chat to see what else they can try for you.
I hope you feel better soon x

oops, have you checked the cobfoundation website, or the icnetwork site, all good info on there too

hellsbelles Thu 10-Feb-11 21:55:05

Beenbeta - 15 years shock..that must have been horrific (I'm fed up after 4 weeks).

I have checked out a lot of the sites but feel I'm working myself into a frenzy of panic as a lot of the stories are very hard to take and are scaring me senseless!

Have you gone into remission now you know your trigger foods? I have already cut out caffeine, chocolate and alcohol but it doesn't seem to be making any difference. How quickly after you cut out a food do you notice a change?

hellsbelles Thu 10-Feb-11 21:57:58

indigo - the weird thing is it all kicked off a few days after I'd drunk rather too much (for the first time in ages) and had a big Indian meal. I do so hope it's just some sort of allergy or intolerence...

VivaLeBeaver Thu 10-Feb-11 22:05:29

Oh God, I have all these symptoms. Am on my 5th lot of abx since Nov. Constant urge to wee, bladder ache all the time, definetly more bladder area than tummy. If I pee on a urine test stick its positive for leucocytes. But in the lab nothing grows.

Am being referred for a scan. sad

VivaLeBeaver Thu 10-Feb-11 22:05:58

With me though the antibiotics work but a week afetr I stop taking them I get the symptoms back.

indigobarbie Thu 10-Feb-11 22:07:14

hellsb I hope so too. I actually feel as if it can take a while for my bladder to become normal and calm after a flare up.
I ate a handful of almonds last week and didn't realise, but this set me back again

I hope you feel better really soon. I drove myself crazy trying to find answers when the Dr didn't have a clue.

Hugs to BeenBeta

BeenBeta Thu 10-Feb-11 22:11:21

hells - I noticed in the early days that if I fasted (ie didnt eat) for 24 hours my symptoms went away completely. I also noticed my bowls felt upset when my bladder symptoms were bad.

I told doctors this and they shrugged their shoulders. I thought I was imagining things but it was only the research group in Oxford that confirmed it really was food that caused it.

Anyway, I went on a coeliac (gluten and lactose free) diet almost 2 years ago and my symptoms subsided a lot. Interestingly, coeliac is also an autoimune problem. I also avoid tomato and things that are spicey and alcohol if I know I need to travel the following day. I also wear a kind of adult nappy if I am travelling and also carry a RADAR key so I can use disabled toilets.

I have learned to manage the impact is now minimal but really I found my own cure by trial and error after finally finding the group in Oxford via a fantastic family GP.

I absolutley agree with everything indigobarbie said.

BeenBeta Thu 10-Feb-11 22:15:06

indigo - thanks.

Incidentally, the research group in Oxford told me that this is psychologically far far worse for women so I have greatest sympathy for everyone on the thread.

I am so embarrased about this condition, I have never told my closest friends.

indigobarbie Thu 10-Feb-11 22:30:25

BeenB I haven't had an actual diagnosis yet, I fell pg in 09 and I, like you have had to do my own trial and error. It really does affect many intimate physical situations unfortunately. It's amzing I actually got pregnant, iyswim blush
Due to me being pg I passed on the next bladder camera, and they seem to think that there have to be hunners ulcers on the bladder wall before they can diagnose IC. Rubbish, I am sure this is what I have.

I had to tell my employer as I couldn't sit at my desk for longer than 5 minutes at a time.....No-one has a clue do they?
Please don't be embarrassed, it's nothing to be ashamed of, it's just so awfully life altering and you really have to think about lots of things you used to take for granted.

I was about to compliment you in your conscise, informative answers. Mine read like a very looooong boring book. I am grateful that you are on here sharing, so that others can benefit from your experience. I am so glad that you are managing your condition, and the research group sounds like a good support for you. I have urologists but they don't seem to know what to do. I am going to tell them I've diagnosed myself and don't need a camera in poking about again....

Everyone do not panic! reading stories on the web is all well and good, but it can sometimes totally do your head in, to the point where your head might burst with the stress of it all.

BeenBeta Fri 11-Feb-11 08:13:03

indigo - please dont worry about the bladder camera thing. As I recall, they distend your bladder and watch for the walls of the bladder to start 'bleeding through'. That sounds far worse than it actually is. It really doesn't hurt. The 'bleed through' is a good diagnosis for IC though.

Your post was not a loooong boring book. Its just how it is. I know it wears you down and amazing how variable the medical knowledge is on this. I've had two unecessary operations on my bladder, psychotherapy, been prescribed valium, oxybutinin drugs that stopped my bladder working, multiple catheterisations, and faced complete bafflement and indifference.

The Oxford research group were wonderful though. It was the first time I really had the opportunity to talk to someone who understood what I was going through. I didnt even know what it was called until I met them. It was a huge relief to just know I wasn't making it all up in my head.

I wasn't going to mention it but as you raised it, yes I know from reading widely on this that many women suffer quite severely with the physical aspects of intimacy. That can obvioulsy put pressure on relationships.

I am going to try and find the old letters from my consultant at Oxford and see if the research group is stil operating. You and others on the thread could try and get a referal via your GP. I was at my wits end by the time I eventually found them. Sadly, they told me right up front there really is no cure. Only management of the condition. Oddly though, that helped me come to terms with the condition and set about finding a way of living with it rather than looking for a way of making it stop.

I'll be back later today with the name of the consultant I saw and his group.

hellsbelles Fri 11-Feb-11 09:43:00

Beta - so even with the control of your diet you still have to use the diapers for travelling?...goodness that must be hard.

How did your symptoms start? Were they bad straight away?

Viva - I guess we can find out together what's going on.

Indigo - I totally agree about reading the stories...while there is some fab stuff it also tends to focus on all the problems...and I am guessing stressing about all this makes everything worse anyway. I'm trying so hard not to spend all my time googling but it's hard not to. That's why I thought MN might be a good place to get a balanced view.

I have just ordered some Aloe Vera from the states as a lot of posts seem to mention that helps with bladder issues. It hasn't arrived yet but I will let you know if there is any relief from it!

ilovemyhens Fri 11-Feb-11 13:48:58

I have had this for the last few months and I have found that Uva-Ursi (Vogel brand) has helped enormously. I can't recommend it enough. Start off on 4-6 times a day, then cut down to twice a day.

BeenBeta Fri 11-Feb-11 14:19:12

The consultant I saw in Oxford was Mr David Cranston at the Churchill Hospital in Oxford (part of the Radcliffe Hospital Trust). I happened to find a COB/IC blog while I was searching for him and the blog post was also very complimentary about him and his unit. The nursing staff were superb.

hells - it is very much as indigo says. I have very good days and then I eat the wrong thing and - BANG - my symptoms come roaring back. I'm just determined not to let it stop me doing things though. I do have a glass of wine but avoid beer and spirits. I like to eat out with DW and I like visiting friends and it feels rude to not eat or just sit picking at my food so I just have to accept sometimes it isnt going to be perfect. Wearing an incontinence pad occassionally is not so bad - especially when travelling.

I also fashioned a career that allows me split SAHD/WAHD so I can be a bit flexible if I have a bad day. I work entirely on the internet and of course DW is and always has been incredibly supportive and works with me which is nice.

ilovemyhens Fri 11-Feb-11 18:01:12

BeenBetta, have you tried Uva-Ursi?

lindsell Fri 11-Feb-11 18:10:23

My dsis has this and one thing that made a huge difference for her was only drinking bottled water and never tap water, took her a long time to discover that and the drs were useless

BeenBeta Fri 11-Feb-11 18:31:02

I have tried a few herbal remedies but not Uva Ursi. I do know about D Mannose too but both that and Uva Ursi seem to be aimed at killing bacteria?

Bacterial infection has never shown up in my bladder in tests though so am pretty sure it is only food 'triggers'.

lindsell - I drink only (Britta) filtered water but never went the whole hog and cut out tea and coffee.

hellsbelles Fri 11-Feb-11 19:34:04

Beenbeta - I thought caffeine was like the devil for IC! Glad you can still get away with having it. I've already stopped having it just in case.

When you stray from the diet and get a relapse - how long does it take to get back on track? Also I keep reading on all the forums about prelief which apparently helps when eating forbidden foods....have you ever tried it?

BeenBeta Fri 11-Feb-11 19:41:06

I know when I have eaten something because I get terrific bladder pain a few hours later.

It then lasts about 24 hours until whatever it is has passed out of my bowels and the pain relief is instant. As I said earlier, if I dont eat, I dont get pain. It is as direct and sImple as that.

What is 'prerelief'?

hellsbelles Fri 11-Feb-11 19:58:20

Beta - here's a link ml.

I haven't tried it but I keep seeing mention of it on the US IC forums.

BeenBeta Fri 11-Feb-11 20:20:49

Thats very interesting. I notice that it is used for irritable bowel too. There is some indication that irritable bowel is a linked autoimmune symptoms. I once described to a doctor that it was like having a bladder full of sulphuric acid and food acid is definitely a factor.

I think I might well give that a try and it can be bought in Boots apparently. Why on earth don't doctors mention things like this?

Thank you. smile

ilovemyhens Fri 11-Feb-11 20:26:49

Infection never shows up on my msu tests either.

BeenBeta Fri 11-Feb-11 20:27:31

hells - I didnt answer one of your earlier questions.

It all began shortly after I got a severe bowel infection on holiday in Greece. I had a notion it caused my gut to become permeable and that is where the whole food trigger thing got going with my immune system. I have no proof of that though.

hellsbelles Fri 11-Feb-11 20:33:06

I don't know Beta why drs are often so crap - but wouldn't it be fab if prelief actually works! Fingers (and legs!) crossed.

I have to admit to little faith in mainstream drs. Despite seeing a private specialist when I had an incompetent cervix in my second pregnancy - I had to come up with my own treatment dr had been telling me that I would most likely lose my baby at 20 weeks...but I googled like a maniac and came up with a plan and got her to 38 weeks.

If I do have IC I plan on becoming an expert wink

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