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.

Yes, I think you have to send a sample off.

Yes - that's it, broth culture. It's a longer test - I think like five days? - and then they match the AB to the bacteria, I gather.

Totally know what you mean about not wanting to take antibiotics for ages though - that's why I went the other route. At the beginning of all this for me, my GP but me on two lots of killer antibiotics just in case I had pelvic inflammatory disease, and it made me instantly, obviously, MUCH worse. In the end I jacked them in and felt back to normal (ie crap, but not deathly) within about four hours. From here on in, I'm keeping them for life-threatening situations only. Never again.

Have you considered yeast as an issue? There's a good online questionnaire here, which should give you a sense of whether that could be a root cause for you

www.mall-net.com/cgibin/quiz4.cgi?quiz=crook.qa

And hells, who knew about Fallon?! Really looking forward to taking delivery of my copy. And good luck today! Come on and report back afterwards!!

Hi

I was told I have IC had numerous cysoscopy and laparoscopy over a 6 year period, I wasnt confident of the diagnosis so kept pushing it. I was finally diagnosed with pelvic venous congestion where my vien in my pelvis became enlarged and pushed on my bladder. it can only be seen during a venogram where you are upside down (This was 96.......I think they have come a long way now) There is treatment now........a possibility.

Raphel Wow - thank goodness you persevered. How are you now?

I had my appointment today and felt a little fraudulent bouncing in there after having nearly 4 days of no real symptoms. She was very calm and went through my entire history. She was not at all surprised by what's been going on given my miscarriage/D&C history. Plus I have taken huge amounts of nurofen in teh past with my back problems which she also thinks is a factor. My mother had candidiasis and Deborah suggested that as I was breastfed as a baby I probably got that too. Cue massive panic about my own DC...what the heck have I past onto them via breastfeeding.

Anyway - I've got to do lots of tests next week and then see her again in 2 weeks to get the diet etc. As I left she said 'just start now by cutting out all carbs'...lovely!

She calmed me a lot - she seemed sure we'd sort this out and as I'm so early into it all she didn't seemed phased. She was very anti me carrying on with the invasive medical testing and relieved when I said I hadn't yet had the cysto/hydro my dr had been pushing for...so for now I will probably hold fire on that side of things and see how I get on with her.

Hey Hells - that sounds great! She's a very calming woman, I found - has total confidence that all is resolvable, and that you just need to find the right way to tackle it. I had all the tests, too - the whole thing was very revealing. I found what it really made me feel at the end of it was, not 'why have I got this?', but 'I can see EXACTLY why I got this'. Made me think of my body a) more holistically and b) atemporally - that is, the product of years of various dietary and medical procedures!

How are you feeling today, anyway? So glad you're feeling better. Long may it last! And good to know she's not fussed about you getting all the grim cysto/hydro tests. Phew!

Interesting about your mum, too. Did she get over it? I got worried about passing on yeast stuff to my DS too - we're going to talk about probiotics for him at my next appt!

L&S - absolutely - I do feel a lot of the stories you read are where someone desperately relies on conventional medicine and can't/won't allow the slower treatments time.

My Mum's in Australia on holiday at the moment so I can't double check exactly when it was but I remember when I was about 10 she had an awful swollen tummy and did the most stinky farts imaginable! (sorry TMI!) And she went on a strict gluten free diet. She's fine now (I do think she was very stressed at the time too for other reasons) but i can't remember how long it took.

It did sadden me slightly that I thought I was doing the best thing breast feeding and it's possible I wasn't?!!

She did mention I should do cranial osteopathy as well...did you ever try that? I know it worked brilliantly for my son when he had terrible ear infections so I'm very open to it!

I've killed the thread with tales of my mother's horrible farts haven't I? I knew that was a taboo too far

How is everyone today? Fingers (or should I say legs!) crossed that everyone is doing well.

Deborah as asked that I don't start the Aloe Vera while under treatment with her...but it seems such a waste. Is there anyone that would like to try it to see if it helps? Just PM me your address and I'll send it (free)...I'd be thrilled if it could help someone else.

I'm still feeling so much better than before (stingy but nothing like the frequency I had when this all kicked off). As always hoping this was just a horrid one off never to be repeated...but then I also think...maybe I was a lucky one that got a warning, and if I sort it out now then that's it. So I'm still being good on the diet. I have the tests on Thursday.

L&S in that book I'm reading she actually suggests some wines that are o.k for IC patients! HURRAH. It's upstairs now (and I'm in lazy mode) but I'll get it later and post on here. Wouldn't that be amazing? She also suggests low acid tomatoes that are perfectly safe. I know I have to do the Deborah diet first (whatever it is she comes up with for me) but there are lots of ideas for the future and keeping this thing from flaring up again.

How long is it you have been on the diet now? I'm trying to recall how long you had symptoms for before you found Deborah?

Thanks for the welcome. Glad you found the appointment helpful hells. Is it garlic in food or capsules that helps?

TC - I think both. I'm taking one capusule a day (I got it in boots) and putting loads in my food! I love it anyway so it's not a hardship.

She was a bit iffy about other things I was taking but was happy for me to continue with that.

If you are taking Vitamin C you must not do that!

hells - glad to hear you have not been too bad of late. I see you from another thread you are going Gluten Free. Are you going to an alternative therapist who recommened that? Interesting to read about your mother. Coeliac is thought to be an inherited condition. GF diet certainly helps IME.

Meanwhile I am still waiting for my Prereleif to arrive in the post. Just about to tuck into a glass of red wine, with chicken and chorizo in tomato sauce. This is going to hurt - but at least the rice will be GF.

Life is too short to put it on hold.

Beta! You naughty chap - I hope the after effects are worth it! At the moment I've got so much going on that I'd rather be good on the diet so I can deal with normal life rather than running to the loo every 10 mins. I do take your point about not putting life on hold but I feel like I just want to get this sorted if I can and that will mean being really strict with myself for a while.

But there is hope (!) I'm going to post on here the wines the lady suggests in the book I'm reading - she seems to think they are safe for IC sufferers so who knows...you may be able to drink without pain.

The therapist I have been to see Deborah Grant at the Hale Clinic. I saw her yesterday. I've still got to do a lot of tests (on Thursday) with her and at that point she'll prescribe the diet (which she suggested maybe gluten free). She said for now to carry on with what I'm doing (avoiding caffeine, alcohol, tomatoes) and added in that I should avoid carbs...though brown rice o.k. I may cheat on the carbs (still have wholemeal toast etc) until after the tests as I have a feeling the diet she prescribes will be very hard core!

But she seemed confident that if I follow her prescription/diet I will be able to get back to a normal diet at some stage (she couldn't say how long till she gets test results). To be honest I think that I'm at very early stages of this so hopefully it won't be too long. Is it something you would consider? She seems very knowledgeable and has good testimonials.

My mum seems fine with gluten now. I can't remember how long she had to avoid them for though. However she's never been a drinker and avoids caffeine so she's probably inadvertantly avoiding trigger stuff anyway.

Belatedly .. hello! Up at my mother's with DS, had a day out at the shops and so forth.

Hells, I went to see Deborah probably about two and a half months after my thing kicked off, and I've now been doing the diet/supplements for about two months. Though I'm still very nervous about relying on the improvements, they're unmistakeable - my vulvodynia is gone, my frequency is basically back to normal and the pain is much reduced. Have significant periods of time that are symptom-free.

Deborah said at my last appt (ie my second, after I'd done the diet for a month) that she expected me to be able to reintroduce things into my diet at four months - so I'm halfway there. It's funny, though - I'm much less bothered about it than I was. I'd rather get myself absolutely back to normal and be able to have a drink/biscuit very occasionally.

Oh - I know what I wanted to know - did Deborah say anything about the d-mannose? And - how are you feeling today?

Beta - I am pretty about the chicken and chorizo! Hope you enjoyed them and you're feeling okish now! x

Oh Hells and just seen the q about cranial osteopathy - I didn't do it because I'm doing acupuncture, but would've done otherwise (used it on my DS too to great effect - did you go to the centre near Exmouth Mkt with your DS by any chance?!)

L&S - still feeling pretty normal. A bit aware but nothing like before. Again, like you I'm scared to hope this is a good sign but hopefully it is! So glad you are still feeling good.

She said she would prefer me not to do the dmannose - she wasn't negative about it - I think she just wants to prescribe her own stuff.

I used to live right round the corner from exmouth market actually! But no it wasn't there we went (I somehow managed to be unaware of it till much later!)...it worked so well for DS. He had ear infections constantly and then one successful treatment and they were gone! Though all those antibiotics he had in early life must have been pretty damaging.

Deborah said there is a good cranial osteopath at the Hale that she can recommend so maybe I'll try and tie that in with my next visit.

Good thing about that is you could get it all done at once - if I were going to start again I'd be tempted, but am rather devoted to my acupuncture lady now!

And funny you used to live round the corner from Exmouth Market! I used to work on Farringdon Rd, five mins' walk from EM, but we've moved now, and I don't half miss it. Lovely place. Your poor DS with the ear stuff - I used to get ear infections all the time when I was little, and mainlined antibiotics for them. Horrid.

and GREAT that you're still feeling pretty normal! i vote we aim for 100% normal, then drink champagne and stuff our face with tomatoes to celebrate

Absolutely! I can't wait. I'm positive we'll get there.

Right not much use for us while we are being good but hope for the future (and also Beta if he is tempted!)...according to the Larrian Gillespie book the following wines are usually tolerated by IC patients:

French Sauternes, late-harvest Johannesbury Rieslings (!), and most California Sauternes and Savignon blanc wines. Among the red the nouveau Beaujolais.

Being a bit of a wine novice I have no idea if I like any of these...I like dry white and I think Sauternes is that.

no - sauternes is sweet ! oh well the Savignon blanc should be o.k!

Interesting about the wine! I will certainly bear in mind in future. My lark up at 5.40 this morning (siiiiiiiigh) so am now yawning over a cup of camomile tea [harrumph]. Wishing everyone well for today - and me, for my three-hour train journey back to London

I havehad IC for years and years. it goes into remission at times and flares now and then.

I have not had alcohol for about 15 years- not a drop. I just can't. I drink only water and camomile tea.

I avoid spices like curry, chili, onions, tomatoes, citrus fruits, bananas, chocolate and I am also dairy and wheat free.

For me, diet and hormones play a huge part.

I have not found the cure but the above does help most of the time.

cabbage - when you go into remission can you eat normal stuff? Or do you still stick to avoiding all the trigger foods? It's great to hear you are controlling it and I do hope you are not in pain at all.

L&S - good luck for the journey...you've been doing so well with your frequency so fingers crossed for an uneventful and stress free trip! Bad luck on the early wake up call...I am such a grouch when that happens.

I had a thai takeaway last night. I avoided highly spiced stuff and all the sugary things and no ill effect. Yes I'm still relatively high frequency compared to normal and at lunchtime I had a bit of a panic as I had to go about 3 times in an hour and a half. I'm really not sure what to think...maybe my dr was just too quick to suggest IC and it was just a weird blip in my hormones or something (made worse by stress of worrying about it and all the antibiotics he prescribed). I hardly dare type that as I know it's tempting fate! I'm still too chicken to test booze, caffeine or tomatoes as I just can't risk getting bad again at the moment.

Hey cabbage - so glad you've found something that helps. How often are your flares - and how are your symptoms in between? And if you don't mind me asking - how did it all start for you?

Hells, that's great news on the curry - how are you feeling now? I know when I had an indian takeaway early on it made everything VERY bad, so great news that you can tolerate it. Fingers crossed!

love- I would rather you PMd me if that's okay.

I spent years on the COB forum and TBH focusing on my bladder tends to make me think about it and stress makes it worse!

To be brief- never normal after a UTI almost 30 years ago now.

Some years fine- such as when pregnant and after taking chinese herbs successfully for a skin condition- which links it for me with alergies/autoimmune etc.

helles- I never eat "normal stuff". Ihave been on a strict "diet" for about 5 years. I deviate very slightly at times- such as a tiny square of choc now and then.

I am never fully in remission- I go more than most people, have a smaller baldder capacity, and can have bad "hours" within a normal day for no reason other than maybe eating something which I am a bit sensitive to.

hells- that should be 15 years not 5!

Hey cabbage, of course, will do now