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Interstitial Cystitis.... that regular peeing fire sensation

(25 Posts)
Poin86 Sun 24-Jan-16 21:48:07

Hi all,

Do any of you suffer with Interstitial cystitis at all? Think I'm edging closer to being a sufferer just waiting on seeing a specialist.

Regularly get it after sex even when i do pee afterwards and sometimes for no reason at all that oh so familiar hot daggers up the urethra feeling appears. fun times

In 2015 I had a record 8 courses of antibiotics for it and at least a dozen more cases where I home medicated with those sachets, hot water bottles and plenty of fluids. Managed to get in to work all but 1 day for it last year - even when running a fever as the male boss just doesn't understand it!

I do take a cranberry tablet every day for attempted prevention but they don't do jack for it.

Just looking for others to chat with!

fire pee-ers unite! grin

nmg85 Sun 24-Jan-16 23:07:31

I have IC, diagnosed 2012.

nmg85 Sun 24-Jan-16 23:15:05

IC is very different to normal cystitis in quite a few ways and to be honest IC is different in most sufferers which is why it can be a very misunderstood condition. Have you been told you might have IC or just assuming? Cranberry is bad for IC sufferers due to the acidity in it and I think the tablets are exactly the same. Does it get better with the antibiotics, as most IC won't improve from short course antibiotics. There are also some researchers that think IC can be triggered by the over use of antibiotics.

Brysonette Mon 25-Jan-16 09:38:23

I was recently diagnosed with Urethral Syndrome which is thought to be on the spectrum of IC - but thankfully not as bad, although I thought it was IC at the beginning so have learnt a lot about it recently! My urethra was the most inflamed the urologist had ever seen (I'm oddly proud of that but I'd prefer some other achievement!).

As nmg85 says - do the antibiotics work to clear it? If so it's recurrent infection rather than IC. Has your urine been cultured? If the bacteria are E. coli then the sugar D-mannose is supposed to be excellent to take as both a preventative and to help get rid of infection. There is a research paper that states it works as effectively as antibiotics - but only against E. coli. I take d-mannose every day as an infection on top of Urethral Syndrome would set me back massively.

If there is no infection you can try the IC diet? I was advised by my urologist to never touch caffeine - worst thing ever for bladders according to him! I follow this diet as I find it also helps reduce my symptoms but is individual for everyone:
ic-network.com/downloads/2012icnfoodlist.pdf

Hope that helps and let us know how you get on!

Brysonette Mon 25-Jan-16 09:53:10

Oh and I get your frustration with your boss - if he'd ever felt pain like it he'd be giving you all the days off you could ever need!

PollyPerky Mon 25-Jan-16 12:58:17

Please stop using cranberry- it's acidic and may well make you worse, as someone else has said. You don't have an infection you have inflammation.

I don't know if you have followed the IC diet but at the very least you should try drinking nothing but water (not fizzy) and cut out all tea, coffee, alcohol, juices and coke etc.

Once you have tried that then you can try cutting out certain foods, such as tomatoes, spicy foods, hot chili type foods, and more.

Have a look at the Uk COB Foundation for loads of help and a forum.

Poin86 Mon 25-Jan-16 18:12:32

I am assuming at the moment but have been reading up about it a lot (I know...Google isnt always reliable and shouldn't be used to diagnose). I rarely get better from short courses of antibiotics (around 1 in 5 times i actually feel better) and within a week of finishing them it flares back up. I asked for a double course last time as it didn't work and was just sat in tears on the toilet but the antibiotic I get on with is on manufacturing stop so can't get it. More often than not any samples come back as barely any sign of infection (but it is there) but not enough according to the Dr to be making me feel quite as s* as I do...Although I take what the Dr says with a pinch of salt as they also treat my mum who suffers too and tell her something different each time! I get painful cramps when my bladder is full and need to go a lot - even when there is nothing there but doesn't always hurt..
I'm caffeine free anyway as it affects my IBS and anxiety. Not had any in about 3 years. I don't like cranberry juice really so normally just have 1 tablet but will try and not take them for a while and see if that helps. Thank you.xx

dementedma Mon 25-Jan-16 18:16:51

Sympathues here. After about 8 courses of ABs last year - and on them again now- I have been referred to urologist next week. D-mannose helps a lot! Normally my sample comes back wit e-coli and the meds help but it just comes back again. Am absolutely sick of it!

WhoTheFuckIsSimon Mon 25-Jan-16 18:23:26

I've had a chronic UTI since 2011. I don't really believe in interstitial cystitis. I'm under treatment with the top person in the country and he doesn't believe in IC either.

He believes I have an embedded infection which needs treatment with high dose long term antibiotics.

nmg85 Mon 25-Jan-16 19:06:25

I find people who say that they don't believe in IC quite offensive to the people who suffer with this condition and for those that it controls their life. Everyone's condition is different and yes some are found to be due to an embedded infection but not all in fact most aren't. It's a very unknown disease and maybe with more research it will be proven to be something else but Drs don't just pluck things out of the air. There are many people who have had successful treatment which doesn't include antibiotics and others that haven't found anything that works. I hope antibiotics works for you but unfortunately for most sufferers it isn't that simple.

WhoTheFuckIsSimon Mon 25-Jan-16 19:34:16

Well I'm sorry if I offended you.

I found all the Drs who told me I had IC quite offensive. It's an easy diagnosis/label to give someone which such symptoms.

WhoTheFuckIsSimon Mon 25-Jan-16 19:35:40

I was told for years I didn't have an infection. The normal hospital urine culture misses about 85% of infections. So then women are told they have IC or its all psychological. Which I think is a disgrace.

nmg85 Mon 25-Jan-16 19:39:36

I agree that some Drs are bad and that people say it is in your head. People think because they can't see anything physically wrong with you then you are 'putting it on'. I would love each of those people to have it just for a day and then see what their response is.
Good luck with your treatment

WhoTheFuckIsSimon Mon 25-Jan-16 19:42:53

Thanks. The antibiotics certainly keep me symptom free but when I stop taking them it all comes back.

RNBrie Mon 25-Jan-16 19:50:31

I was diagnosed with IC and vestibulitis about 15 years ago. Suffered on and off for about 5 years. I agree that antibiotics didn't touch the sides and they gave me recurrent thrush which the gp thought triggered the vestibulitis.

My symptoms all went away when I went through a complete lifestyle change. Lost a lot of weight, changed diet etc. I didn't do the lifestyle thing to improve my condition, just because I was tired of being fat so the results were unexpected.

I am not sure if I genuinely had either condition as my gp was very surprised it all seemed to go away.

What I found controlled my symptoms... giving up alcohol, washing with a vaginal wash every night and again after sex, not using condoms when having sex, not wearing tights and drinking a lot of water every day. When I had flare ups I drank a lot of cystopurin and had regular salty baths.

Op, I feel for you completely. I know how fucking awful it can be and it's completely relentless when it's bad. Keep pushing the doctors, don't be fobbed off flowers

PollyPerky Mon 25-Jan-16 19:57:50

The problem is, no one knows what causes it or the right treatments.

Some drs think it's bacterial and others think that too many ABs can start it by damaging the bladder wall.

There is no single solution. Some women get better by following a strict diet, others with a combo of all kinds of medication.

It is really trial and error but certainly trying the diet is a good place to start.

nmg85 Mon 25-Jan-16 20:03:09

My starting point was following the diet and also keeping a diary of when symptoms got worse etc. I can now pretty much eat what I want but I know from the diary that I can't have sweeteners, tea (only redbush now), coffee, strawberries, minimal spice, certain wines, minimal fruit juice and fruit due to acid.

AnnaFiveTowns Mon 25-Jan-16 20:04:24

WhoTheFuck, I'm with you on this one. I don't believe in I C; that's not to say I don't believe that the symptoms are real but I think there is a deeply embedded underlying infection that causes the symptoms rather than an auto immune problem. The tests that the Drs use to detect infection are useless and many antibiotics don't work because they can't accurately identify which bacteria are present.

I have suffered from recurrent Uti s for years and whenever I have a particularly bad flare the Drs often start to talk about IC as my samples are often clear. In the past I've been told I had no infection but when I'm given a particularly strong, broad spectrum antibiotic the symptoms are relieved immediately.

OP, its completely shit but as RN said above, there are many things that can help. Ive had to chuck out all my jeans as I flare up immediately when I wear them.

WhoTheFuckIsSimon Mon 25-Jan-16 20:07:31

Yes, that's exactly what I mean. IC just means that you have symptoms of pain and/or increased frequency/urgency. But it's not a diagnosis IMHO if they can't say what causes it or know how to treat it.

Soooosie Mon 25-Jan-16 20:19:03

www.cobfoundation.org

Follow this link ^^

Soooosie Mon 25-Jan-16 20:29:51

Your urine culture needs to be given longer to develop in the lab.

Correct antibiotics need to be given for longer to ensure the bug is thoroughly treated. Most courses of antibiotics are too short. The surviving bugs can 'learn' the antibiotic and become resistant.

Soooosie Mon 25-Jan-16 20:42:53

www.nhs.uk/Services/hospitals/Services/Service/DefaultView.aspx?id=193883

WhoTheFuckIsSimon Mon 25-Jan-16 20:51:37

Sooosie, im seen at The Whittington but not by the urologists. I'm seen in the LUTS clinic however they're not taking new patients on at present.

Soooosie Mon 25-Jan-16 22:18:17

That's such a shame.

Poin86 Tue 26-Jan-16 13:39:09

Looks like a lot of us suffer certainly with UTIs/Cystitis/IC sad

RNBrie Great advice there - we do use condoms but mainly as i'm on no other form of contraception as needed to move away from the hormonal stuff and don't like the thought of the coil at the moment. I bathe occasionally now but don't use bubble bath any more sad Congrats on making those lifestyle changes!

More often than not, my doctors don't even take samples now, they just give antibiotics.. they are terrible like that.

May keep a food/activity diary to track flare ups and see if there is a particular regular thing that appears.xx

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