LegalAlien
10-27-2005, 10:40 AM
First off, I want to thank everyone who replied to my first post a few weeks ago. This seems like a wonderfully supportive network of people, and I'm so glad I found it.
Two weeks ago I had a cystoscopy under general anesthesia. The uro did a urethral dilation, a biopsy, and hydrodistention. He found nothing wrong and has now basically written me off. I'm not sure what I should do next and need some advice.
Medical history: About 8 years ago, I had recurrent UTIs--4 of them in as many months--and because I was only 19 and stupid, when my GP said the word "urologist" I freaked out and did nothing when the UTI came back. The symptoms went away after two weeks and then stayed away for a long time. A couple of years later, I experienced what I think was the first instance of what's bothering me now. It felt like pain/pressure in my bladder and a constant urge to urinate even when empty, but no burning when I did go. I had no insurance, so I took Uristat until the pain went away. The same happened a few months later. This was five years ago, and since then I've had urgency all the time--that is, one minute I feel no need to urinate and suddenly I have to go immediately, and when I do go, there's not all that much coming out.
The urgency intensified this March and suddenly I was having the pressure/pain again. Doctors could find no trace of a UTI (but put me on antibiotics, anyway :mad: ). In August I had two episodes of severe lower back and abdominal pain, the second one putting me in the hospital for a day while they made sure it wasn't a kidney stone or appendicitis. More doctors, more antibiotics, no relief.
Two months later, and I still haven't found anyone who can help me. Like I said, the uro has given up. He said he found nothing abnormal during the cysto, and all he offered me was "some medication" for the urgency. I don't feel at all better since the procedure (if anything, I feel worse because of increased pain), so whatever the problem, it's still there.
So far, the only physical issues they've found are blood in my urine and an elevated white blood cell count (this on the day I ended up in the ER and was admitted to the hospital--both issues had cleared up by the next day), and when the uro tried to do an in-office cysto, he couldn't get the scope in. My urethra is apparently unusually tight (and the opening, I guess, is in a weird place--hidden, not easy to find). He said my vaginal opening is also unusually small. But he said nothing more about this, so I have no idea if it's significant or not.
I have other problems right now that may or may not be related to this. The back and abdominal pain has persisted. I seem to have flare-ups where it's severe for a week or so and then eases up a little but never goes away. I have to use a heating pad on my abdomen every night, or I can't sleep. Two or three times a week, I wake up in the middle of the night or early in the morning with agonizing stomach cramps, acid indigestion, and/or nausea, which usually ends in a round of vomiting. I'm seeing a GI specialist for this after the weekend.
Another problem is recurrent yeast infections, which I've had for 6 years. I can count on one hand the number of weeks during these years when I haven't had yeast or bacterial vaginosis. Every time it's treated, I get it back within a couple of weeks. My OB-GYN is stumped. He sent me to an infectious disease specialist, who's also stumped and told me I should try the Mayo Clinic or the Scripps Clinic for help, because this is totally abnormal and my only other option is to take Diflucan for the rest of my life. I'm undecided on what to do about this, and right now, my back/abdominal pain is more of a pressing issue.
So it seems as though my options are running out. When I was told I might have IC (by the infectious disease specialist), it made a lot of sense, but my uro seems to feel he has ruled that out. Would there be any point in going to a different uro for a second opinion? And other than a wild guess, how can I find one who might know more about IC and be able to help?
Any advice would be appreciated!
Two weeks ago I had a cystoscopy under general anesthesia. The uro did a urethral dilation, a biopsy, and hydrodistention. He found nothing wrong and has now basically written me off. I'm not sure what I should do next and need some advice.
Medical history: About 8 years ago, I had recurrent UTIs--4 of them in as many months--and because I was only 19 and stupid, when my GP said the word "urologist" I freaked out and did nothing when the UTI came back. The symptoms went away after two weeks and then stayed away for a long time. A couple of years later, I experienced what I think was the first instance of what's bothering me now. It felt like pain/pressure in my bladder and a constant urge to urinate even when empty, but no burning when I did go. I had no insurance, so I took Uristat until the pain went away. The same happened a few months later. This was five years ago, and since then I've had urgency all the time--that is, one minute I feel no need to urinate and suddenly I have to go immediately, and when I do go, there's not all that much coming out.
The urgency intensified this March and suddenly I was having the pressure/pain again. Doctors could find no trace of a UTI (but put me on antibiotics, anyway :mad: ). In August I had two episodes of severe lower back and abdominal pain, the second one putting me in the hospital for a day while they made sure it wasn't a kidney stone or appendicitis. More doctors, more antibiotics, no relief.
Two months later, and I still haven't found anyone who can help me. Like I said, the uro has given up. He said he found nothing abnormal during the cysto, and all he offered me was "some medication" for the urgency. I don't feel at all better since the procedure (if anything, I feel worse because of increased pain), so whatever the problem, it's still there.
So far, the only physical issues they've found are blood in my urine and an elevated white blood cell count (this on the day I ended up in the ER and was admitted to the hospital--both issues had cleared up by the next day), and when the uro tried to do an in-office cysto, he couldn't get the scope in. My urethra is apparently unusually tight (and the opening, I guess, is in a weird place--hidden, not easy to find). He said my vaginal opening is also unusually small. But he said nothing more about this, so I have no idea if it's significant or not.
I have other problems right now that may or may not be related to this. The back and abdominal pain has persisted. I seem to have flare-ups where it's severe for a week or so and then eases up a little but never goes away. I have to use a heating pad on my abdomen every night, or I can't sleep. Two or three times a week, I wake up in the middle of the night or early in the morning with agonizing stomach cramps, acid indigestion, and/or nausea, which usually ends in a round of vomiting. I'm seeing a GI specialist for this after the weekend.
Another problem is recurrent yeast infections, which I've had for 6 years. I can count on one hand the number of weeks during these years when I haven't had yeast or bacterial vaginosis. Every time it's treated, I get it back within a couple of weeks. My OB-GYN is stumped. He sent me to an infectious disease specialist, who's also stumped and told me I should try the Mayo Clinic or the Scripps Clinic for help, because this is totally abnormal and my only other option is to take Diflucan for the rest of my life. I'm undecided on what to do about this, and right now, my back/abdominal pain is more of a pressing issue.
So it seems as though my options are running out. When I was told I might have IC (by the infectious disease specialist), it made a lot of sense, but my uro seems to feel he has ruled that out. Would there be any point in going to a different uro for a second opinion? And other than a wild guess, how can I find one who might know more about IC and be able to help?
Any advice would be appreciated!