I have been diagnosed now

[mazzie]

Hi all

I have posted a bit on the pre-diagnosis thread. I was told by my doctor this week I probably have a form of IC. It started for me on Friday 13th March when I woke with bladder pain. No warining just bang there it was. It was a week after my brothers funeral and I think it is connected. I had large flakes in my urine and microscopic blood every time it was tested (11) over the following weeks. It was constant pain or irritation , then up and down for the last 2 months. I was pretty hysterical as it became severe at times and stopped me sleeping waking me up every 40 mins with the pain but often I would go back to sleep without visting the bathroom,as I knew I didnt wasnt a pee.

Long story short I got a cystoscopy (ouch) and there were no cancer cells and there was inflammation. I was put on amitypltyline and it works very well sleep deprivation was making me suicidal and I am not exaggerating.

As soon as I got the symtoms I looked them up and decided I had IC. I dont have bad frequency , even waking at night, the [pain woke me then I went back to sleep. I started immediately on the IC diet but found it didnt have enough effect.

I got the IC Puzzle book 6 days ago and my life has completely changed in that time. I have stuck to the strict diet more or less. I have been on many prescribed medications for 6 months following spinal surgery and I relaise now that this has made me toxic so I have reduced them to a tenth of what they were and live with the pain which is only a bit worse than what it was before! I was taking Lycira and my doctor thought at first it was this drug irritating me so I came off it 4 weeks ago. My buttock and heel pain is worse and my shin too but I prefer not to be on it if I can get away with it!

The pain today has been negligable. I went shopping with my friend and didnt need to use the bathroom for 7 hours and no pain either. I had been drinking too much water though, so was going every hour to an hour and a half in the day. I got a ph kit and tested my tap water and it was 5 !!! The spring water you buy locally is 7.9. So 3 days of only drinking sping water and 6 days of the diet I am very happy to say that it is 100 times better than it was!. I am not kidding myself it has gone anwhere I am keeping it at bay thats all.

I have been offered weekly instils at the local hospital and if this improvement continues I wont have them as I wont need them. keep you posted thanks for the support I have already recieved Mazzie x

[Katrina]

Sorry you have to deal with the same uggg that the we all know too well.

Frequency isn't usually a big issue for me either. I am either aware of an irritating bladder or in pain...........frequency flares happen but are not my common problem.

I would want back on the Lyrica but than it has helped me with so many issues and I totally understand not wanting more meds.

I myself would want to be taught to do home instills rather than coming in weekly...that way if things ever turn around you have a plan instead of those scary nights! :grouphug:

[vm]

I'm glad you know what is going on now - you can start down a path towards healing. :) Thanks for letting us know what you've recently found out.

[VickiB]

I'm sorry you've been diagnosed with IC, but like Kim said, it's good to know what you're dealing with. It sounds like you're already seeing some improvement and that's got to be a good sign! Hang in there!

Vicki

[Bekah79]

Hi, Mazzie, I am also new here. I hope you bladder will continue to respond the medicne they gave you.

Good Luck

[mazzie]

Thanks Katrina, I will ask about Lycrica but when I am more settled I did find it helpful for my spine pain just struggling with the thought of adding another med to the 2 tramadol 2 paracetamol a day I have got down to instead of 10 times that!! It is a good drug though. Thanks for telling em about your pain I thought no-one was like me veen in a flare of pain I dotn go for a wee more than 1.5 hourly its the night nightmare situation as you say!!! Seems you haveso much to deal with my goodness how do you cope ? You are amazing !Hope we keep in touch Mazzie X

[Katrina]

Well, since my memory of life begins at age 12 after a bad seizure...the first things I knew about myself was that I had almost died and had health problems. It has been a mt. I have always had to climb...but it has gotten so familiar to me that in some ways it is like home...I know best how to do the climbing of this mt...not sure how I would do with a different one. My med list is huge...but since Lyrica gave me more energy, had me eating a larger variety of foods, and not taking as much pain meds or antispasmodic I felt it was sooo worth it. Anyway...in me it does have the big job of preventint seizures so the perspective is a bit different.