Interstitial Cystitis Bladder Pain Syndrome discussion forum
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Join date : 2017-05-22
Location : Ontario, Canada

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PostSubject: Hello Everyone   Hello Everyone EmptyTue May 23, 2017 6:45 am

I just found out about this project last night and sent off an e-mail immediately to be a part of it. I was really amazed by the quick response and find this so hopeful, especially in an area that doesn't have a whole lot of hope.

I was recently diagnosed with IC but have been suffering with it for 6 months. The first symptoms came right before Christmas and I thought it was a bladder infection. I went to the walk in clinic and was prescribed an antibiotic because they found some bacteria in the urine sample. When the antibiotic didn't work, I went back and had another urine sample-but of course, it was now bacteria free. They sent my urine away to be cultured but I never heard anything back, so it came up negative for bacteria. I went back to that clinic at least 5 times begging for answers to which they didn't have any. I also had other testing done because the pain I was experiencing was almost electric, like an injury or what the doctors were thinking could be an STD. It was not, I was cleared of all STDs. I haven't had that type of electric pain since the original flare up 6 months ago, but now I get the common aching pain in my lower back, abdomen and in one part of my vaginal area. The most concerning symptom I deal with is the urgency to urinate. It is most debilitating in the afternoon and evening. I have minor urgency in the morning, but for a few hours, I do have some relief as it's not as prevalent upon waking up. The symptoms do change depending on where I am in my cycle. I find that during ovulation it's the most uncomfortable but during the other days, it's relatively manageable, but still uncomfortable.

The official diagnosis came after a cystoscopy and the urologist suggestion was for me to manage my stress-that's all. I left feeling really defeated (and in pain, that procedure hurts!). I went to my doctor who doesn't have much knowledge in the area and she prescribed me Evail, 10mg, to try for 30 days. So far it hasn't done much for the pain or urgency, but I am able to sleep through the night. I was getting up 1-3 times/night.

What I'm dealing with now is urgency and an aching body, especially my joints and back. I'm a 29 year old women, fit and working in the health industry. I shouldn't have this type of arthritic pain. I am attributing it to the IC as it is very recent. It is keeping me from being my best at work (I am self employed, so it is a major concern if I can no long work).

I am sticking to the IC diet, I haven't had coffee which is my favourite thing in this world, for over a month and I keep my body as alkaline as possible, so no refined sugar, no alcohol, I am gluten free, preservative free, only eat the mildest of cheeses, eat lots of vegetables, limited to alkaline fruits, etc. In terms of a social life, I know I can't be in a relationship as orgasms cause intense pain in one area of my vagina, so that has me pretty darn depressed. I don't go out with friends much anymore because the IC diet is so restrictive, I'm always the one that has to just sip on water in the corner. My quality of life has drastically decreased. I don't feel normal. I feel depressed and stuck on the outside looking in.

I am currently researching biofilms and the role they may take in IC. I am eating a lot of digestive enzymes in between meals as these guys apparently breakdown some types of biofilms. I'm also looking into bacteriophage therapy, but it is also only in a few places in the world as well.

I am really hoping this project takes off. I'm willing to participate even if it means I have to fly 24 hours to get there (I'm in Ontario, Canada) and leave my job. I don't care, I just want to be IC free and live a happy life again.
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Posts : 13
Join date : 2016-11-07

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PostSubject: Re: Hello Everyone   Hello Everyone EmptyMon Jun 19, 2017 8:01 pm

That's so horrible, I know how you feel I was 29 when all this started from a UTI. I did stick to the IC diet for a while but I found it too restrictive and I was getting depressed when my social life started to dwindle I have cheat meals when I go out with friends and I take Prelief before so I'm not in as much pain after. I no longer work not only because of my bladder pain but my pelvic floor muscles have tightened up causing even worse pain than the bladder. I know people who are even younger then us that have had this since they were teenagers, at least we were able to go through most of our 20s living a "normal life". This study is giving us hope because it feels like people actually care.
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