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Twenty-five
I am twenty-five and I have Interstitial Cystitis. I'm currently bleeding from my bladder due to this (not to mention the pain that I've had since before my diagnosis). I was diagnosed roughly a year ago (I don't remember exactly when).
Throughout my life I've had bladder pain or kidney pain and thought I had yet another UTI. But one episode was especially bad and my general practitioner decided to send me off to a urologist to have things examined more closely.
I am currently going through (another round of) bladder instillations weekly. Besides that I am taking 10/325 mg of Percocet every 3-4 hours.
We've tried so many things. Everything from Elmiron to shoving Valium up my vag. every eight hours (my uro's arnp had heard about the latter at a conference).
Nothing is helping.
The other day my uro's arnp told me that I am the most difficult case she's seen in about 20 years of practice.
And I'm twenty-five.
I'm crying writing this, because it hurts me to know that I have so much living ahead of me. And it's very likely that this is how it will be spent. 3 months of instillations on, 3 months off. And a bottle of pills wherever I go. Always looking for a place to sit and rest. Always aware of the nearest bathroom.
I don't know what I expect to gain by writing this . . . but I'm doing it anyway. Maybe it's just the hope that somebody will really hear me.
So there it is. My introduction . . . sorry it wasn't more . . . personable . . . Things are hard right now.
Throughout my life I've had bladder pain or kidney pain and thought I had yet another UTI. But one episode was especially bad and my general practitioner decided to send me off to a urologist to have things examined more closely.
I am currently going through (another round of) bladder instillations weekly. Besides that I am taking 10/325 mg of Percocet every 3-4 hours.
We've tried so many things. Everything from Elmiron to shoving Valium up my vag. every eight hours (my uro's arnp had heard about the latter at a conference).
Nothing is helping.
The other day my uro's arnp told me that I am the most difficult case she's seen in about 20 years of practice.
And I'm twenty-five.
I'm crying writing this, because it hurts me to know that I have so much living ahead of me. And it's very likely that this is how it will be spent. 3 months of instillations on, 3 months off. And a bottle of pills wherever I go. Always looking for a place to sit and rest. Always aware of the nearest bathroom.
I don't know what I expect to gain by writing this . . . but I'm doing it anyway. Maybe it's just the hope that somebody will really hear me.
So there it is. My introduction . . . sorry it wasn't more . . . personable . . . Things are hard right now.
I hope you find better treatments soon. Have you considered doing your own instillations --- I know it sounds challenging, but lots of us either do them or have in the past and found this route to be much easier than spending hours on medical appointments.
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