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Interstitial cystitis?

(10 Posts)
mintymellons Fri 07-Feb-14 12:59:29

I've just seen another recent thread on here from someone who's daughter seems to have the same problem as me.

I have suffered on and off for the last six or seven years with what I'm presuming is IC or something similar.

Mine began with a particularly bad UTI where I was in dreadful pain and urinating bright red blood. I was given ABs which got rid of the pain and the blood and subsequent urine tests were clear for infection, but I was left with a near constant feeling of needing to wee. This went on for several weeks after the infection and my GP said that my bladder must have been badly irritated or damaged. It eventually calmed down on its own.

Since then I've had episodes of the same thing. Sometimes it starts with a low level infection which is treated with ABs but the frequency symptom remains long after. Other times I test negative for bacteria but still have the same symptom.

I saw a urologist a couple of years ago, had a bladder scan which was normal and was offered a cystoscopy which I declined because I was symptom free at that point and didn't want to trigger anything.

I had a long spell with no problems (about 18 months) which ended mid December last year. I was out with my family and had this sudden feeling of needing a wee, but had only been a few minutes before. It's been like that for the last 8 or 9 weeks! The urine dipstick showed a trace of white blood cells and I was prescribed a short course of ABs, but they made no difference. My urine tests are clear now. During the past weeks, I've had the odd days where I've felt okay, but mostly it's been bad.

I don't have the pain which seems to be a feature of IC, just the frequency/discomfort.

I'm getting really worn down by it and wondering if I should ask to be referred back to the uro.

I'm going to read the other thread about IC, but would love any new advice or support.

Thanks for listening.

rugbychick1969 Fri 07-Feb-14 13:33:37

My story is much the same as yours but I'm still on the start of the journey I suspect!

UTI early December last year, blood and white cells in urine on dip stick but nothing showed on the tests from hospital. Had four lots of antibiotics that didn't really make much difference, the odd couple of days when I feel normal the rest of the time having to live with it. Bloods have come back normal range.

I've also had a heavy feeling down below on and off when its not burning and not convinced I don't have some sort of prolapse although GP has said no (examined twice now!). I have a scan booked for the 21st although I don't know what they are looking for, I have pain on and off in my left side where ovaries are.

I have cut out caffeine, fizzy drinks etc from my diet & taking pro-biotics. Have had a bit of success with D-Mannose powder but that makes me have extreme wind! Now trying Uva Ursi as don't want any more antibiotics. Feel a bit desperate some days so know how you feel would definitely push for a referral, I will be once I have the scan!

mintymellons Fri 07-Feb-14 17:18:06

Hi rugbychick

Sorry to hear of your problems.

I meant to say in the OP that I have tried lots of things over the last few years including d mannose (agree with you about wind! Gives me stomach cramps too and doesn't really work if you don't have E. coli infection). Also tried Uva Ursi, Aloe Vera gel, probiotics, the list goes on. When my symptoms disappear or improve it's hard to know if any if these treatments have helped or not.

I saw a urologist a couple of years ago who told me the next step was a cytoscopy but I declined it at that time as I was well and didn't want to set it off again. I was fine for well over a year until December.

I think it was stress which triggered this current episode as I had a stressful time in the weeks before (had a breast lump which had to be checked out).

I don't think food/drink is a factor for me but I could be wrong.

It's such an unpleasant 'thing' to have to put up with. You have my sympathy.

skillsandtea Fri 07-Feb-14 17:23:51

I am the same. I tried various antib's from the GP, inc. trimethoprim but they didn't work. I did have the cystoscopy and all made no difference. However, I was prescribed Nitrofurantoin from my urologist and they have worked brilliantly. I don't think I'll ever be free from the condition but as soon as I get that feeling of an attack I take the meds and I can prevent it from becoming unbearable. For some reason it's not that the GPs seem to hand out. I hope you get it sorted.

mintymellons Fri 07-Feb-14 17:27:28

Hi skills
Good that you've found some relief. I'm always prescribed Nitrafurantoin as I'm allergic to Trimethoprim but as there's often no bacteria, the ABs just don't work.

1966gettingold Fri 07-Feb-14 18:06:11

Rugbychick re the prolapse feeling my GP examined me said no prolapse, paid to see a uro/gyna I have three prolapses!!!!! We know our bodies. Depending on people's age the bladder issues can be perimeno which mine are, have been prescribed local oestrogen.

rugbychick1969 Fri 07-Feb-14 18:27:46

Thanks for the replies everyone.

Until today I thought maybe I was heading in the right direction with things being liveable but today I have sharp burning rather than he dull one of previous days despite beingb

rugbychick1969 Fri 07-Feb-14 18:30:45

Sorry posted too soon! Despite being strict with drink etc!

1966getting old - I am hoping this scan will show up something maybe it is a age thing I'm the other side of 40 how do they tell if it's age related?

mintymellons Fri 07-Feb-14 18:44:44

I've noticed mine is worse before and during my period. I'm 39 but this has been going on since my early thirties so not age related in my case I don't think.

Interesting about the prolapses although again not relevant in my case.

mintymellons Fri 07-Feb-14 18:50:30

Sorry meant to say I hope the burning subsides rugby. I don't have any if that for which I'm grateful. I find that I can live with my symptoms but there are times when it gets me down.

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