Specs
12-10-2004, 05:06 PM
First off, I am so glad I've found this board. There is such a wealth of information here, and it's nice to know I'm not alone. I'm sure my story will sound like others.. but well, this is the place to start, I guess. Sorry if it's long...
When I was a baby, I had urinary reflux.. (basically, the urine in the bladder would flow back up into the kidneys. There was also some deformation in the ureter/bladder connection, but that fixed itself over time). Since then, I seem to have been prone to bladder and kidney infections. I just thought that it was something I had to deal with. About once a year, I'd get a UTI. If I started dating someone, I'd get one the instant we slept together - it's just something I accepted.
However, when B and I first got together two years ago, I had several infections, almost back to back. My doctor told me that my cultures were at first positive, but then they started coming back negative. I continued to have troubles, including a severe 'UTI' while on vacation at B's hometown. I went to the local hospital and they did tests, sending the cultures to my family doc. By the time I got home, my doc had the results.. cultures were still negative, so she decided it was time to send me to a urologist.
That was over a year ago. He did ultrasound, urodynamics, and a couple of other tests. He did a hydrodistention and cystoscopy, which showed glomulerations. Official diagnosis, Interstitial Cystitis. Thankfully, the hydrodistention kept my symptoms at bay - I didn't have a flare for three months. Once I had another, the doc put me on low dose Macrobid for 6 months...thinking that if he prevented an infection, he'd possibly prevent a flare. It seemed to work.. in fact, I didn't have any problems for 9 months. I was thinking .. phew! Interstitial Cystitis isn't as bad as I thought it would be!
But over the last two and a half months, it has reared its ugly head. I've had flares that last up to two weeks. Constant pressure, urgency, frequency, and major urethral pain. I work a desk job, and can't seem to sit still because of the pain. Sex is down to once a week at best (and I seem to be lucky to get that).. and my libido seems to have fallen off the face of the earth. Thankfully, B is incredible - he is very understanding and just rolls with the punches.
I'm going back to a different Uro next Friday (my previous one was just too busy, couldn't even get in to see him for four months!).. and I am trying to educate myself as best as I can before the appointment. Currently, I am on minimal medication - UniDet (antispasmodic/anticholinergic) and pyridium. It's not working all that well.
So.. that's where I am up til now. I know, I know.. you're not doctors.. but I hope that you can give me some insight as to what might work in my case. The Unidet seems to be working (mostly) for the frequency/urgency.. but I don't have anything medication-wise that is effective for the urethral pain. I have done all I can do on my end (no scented laundry soap, no tight pants, etc), but it's just not helping. If anyone has any suggestions, that'd be great!
Thanks :)
When I was a baby, I had urinary reflux.. (basically, the urine in the bladder would flow back up into the kidneys. There was also some deformation in the ureter/bladder connection, but that fixed itself over time). Since then, I seem to have been prone to bladder and kidney infections. I just thought that it was something I had to deal with. About once a year, I'd get a UTI. If I started dating someone, I'd get one the instant we slept together - it's just something I accepted.
However, when B and I first got together two years ago, I had several infections, almost back to back. My doctor told me that my cultures were at first positive, but then they started coming back negative. I continued to have troubles, including a severe 'UTI' while on vacation at B's hometown. I went to the local hospital and they did tests, sending the cultures to my family doc. By the time I got home, my doc had the results.. cultures were still negative, so she decided it was time to send me to a urologist.
That was over a year ago. He did ultrasound, urodynamics, and a couple of other tests. He did a hydrodistention and cystoscopy, which showed glomulerations. Official diagnosis, Interstitial Cystitis. Thankfully, the hydrodistention kept my symptoms at bay - I didn't have a flare for three months. Once I had another, the doc put me on low dose Macrobid for 6 months...thinking that if he prevented an infection, he'd possibly prevent a flare. It seemed to work.. in fact, I didn't have any problems for 9 months. I was thinking .. phew! Interstitial Cystitis isn't as bad as I thought it would be!
But over the last two and a half months, it has reared its ugly head. I've had flares that last up to two weeks. Constant pressure, urgency, frequency, and major urethral pain. I work a desk job, and can't seem to sit still because of the pain. Sex is down to once a week at best (and I seem to be lucky to get that).. and my libido seems to have fallen off the face of the earth. Thankfully, B is incredible - he is very understanding and just rolls with the punches.
I'm going back to a different Uro next Friday (my previous one was just too busy, couldn't even get in to see him for four months!).. and I am trying to educate myself as best as I can before the appointment. Currently, I am on minimal medication - UniDet (antispasmodic/anticholinergic) and pyridium. It's not working all that well.
So.. that's where I am up til now. I know, I know.. you're not doctors.. but I hope that you can give me some insight as to what might work in my case. The Unidet seems to be working (mostly) for the frequency/urgency.. but I don't have anything medication-wise that is effective for the urethral pain. I have done all I can do on my end (no scented laundry soap, no tight pants, etc), but it's just not helping. If anyone has any suggestions, that'd be great!
Thanks :)