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New here, please help!
Hi everyone, here's my story. Sorry if it's a little long, I just want to get it off my chest.
When I was about 11, I developed severe bladder pain. There was a constant sting "down there" and it hurt every time I peed. My mom took me to the doctor, who referred me to a urologist. The first urologist thought I had a UTI, but the test came back negative. She didn't know what to tell me. I went to a second urologist, who told me I had bladder spasms and put me on Levsin. It didn't really help.
I would come home from school each day and cry because I had been in so much pain. I felt like nothing could make it better, and was sick of doctors telling me there was nothing wrong with me. Finally, after about a year, the pain slowly went away and I forgot all about it.
I'm 20 now. I lost my virginity at 17 and, although penetration was a little painful, I otherwise had no problems with sex. I was on the birth control pill Ortho Cyclen, and had no problems. Then last summer I stopped taking the birth control because I was no longer sexually active (and I was lazy). Then I hooked up with a guy at a party who fingered me, and all hell broke loose.
I started getting that dreaded pain in my bladder again. I went to my doctor, who had me tested for a UTI (and STDs, just because). All tests came back negative. Frustrated, I did some research, and came across interstitial cystitis. And finally my questions were answered.
The pain from getting fingered lasted about two weeks. And then I forgot all about it. I got fingered again in December, and the pain again lasted about two weeks. About a month ago, I had sex. I've hated myself every day since for not thinking about how it would affect my IC. A day or two after the sex, I started to feel discomfort. Thinking it would go away after two weeks, I waited. Nothing. The pain was just getting worse. I made an appointment to see a urologist who specializes in IC. His next available appointment is in July. At first I was reluctant to call my regular doctor, thinking she won't be able to help me (she didn't even know what IC was last time I talked to her) but decided to go ahead and see her because the pain was getting so bad. I researched Elmiron and hoped she'd prescribe it for me.
She told me I had a UTI, even though I was sure I didn't. She also told me I was allergic to latex condoms, which doesn't make sense (I'm not allergic to latex gloves, and the pain also comes when I'm getting fingered, when no condom is involved). She made me take a urine test, but I convinced her to prescribe me birth control again, because I thought it might help. The urine test came back negative, so she called me and I finally convinced her to prescribe me Elmiron. She made the prescription, but according to my pharmacy (and the FDA) it's backordered for a few months. This news was devastating.
Since then I've been taking Cystoprotek and the birth control pills while I wait for my appointment with the IC specialist in July. I also made an appointment with a physical therapist who specializes in treating chronic pelvic pain.
For the past few days my bladder pain has been UNBEARABLE. I lie in bed all day in tears because I'm too depressed to do anything else. I don't know if it's related to my period (which just came), or to the birth control.
Should I stop taking the birth control? I'm not sexually active and was only taking it for IC. And it doesn't seem to be helping. Also, is there anything I can do to stop the stinging pain in my bladder? I need something to hold me over until I see the IC specialist (his name is Christopher Payne and he's affiliated with Stanford. I've heard nothing but good things about him). I just want my life back. Any advice? I'll do ANYTHING to make this pain go away.
When I was about 11, I developed severe bladder pain. There was a constant sting "down there" and it hurt every time I peed. My mom took me to the doctor, who referred me to a urologist. The first urologist thought I had a UTI, but the test came back negative. She didn't know what to tell me. I went to a second urologist, who told me I had bladder spasms and put me on Levsin. It didn't really help.
I would come home from school each day and cry because I had been in so much pain. I felt like nothing could make it better, and was sick of doctors telling me there was nothing wrong with me. Finally, after about a year, the pain slowly went away and I forgot all about it.
I'm 20 now. I lost my virginity at 17 and, although penetration was a little painful, I otherwise had no problems with sex. I was on the birth control pill Ortho Cyclen, and had no problems. Then last summer I stopped taking the birth control because I was no longer sexually active (and I was lazy). Then I hooked up with a guy at a party who fingered me, and all hell broke loose.
I started getting that dreaded pain in my bladder again. I went to my doctor, who had me tested for a UTI (and STDs, just because). All tests came back negative. Frustrated, I did some research, and came across interstitial cystitis. And finally my questions were answered.
The pain from getting fingered lasted about two weeks. And then I forgot all about it. I got fingered again in December, and the pain again lasted about two weeks. About a month ago, I had sex. I've hated myself every day since for not thinking about how it would affect my IC. A day or two after the sex, I started to feel discomfort. Thinking it would go away after two weeks, I waited. Nothing. The pain was just getting worse. I made an appointment to see a urologist who specializes in IC. His next available appointment is in July. At first I was reluctant to call my regular doctor, thinking she won't be able to help me (she didn't even know what IC was last time I talked to her) but decided to go ahead and see her because the pain was getting so bad. I researched Elmiron and hoped she'd prescribe it for me.
She told me I had a UTI, even though I was sure I didn't. She also told me I was allergic to latex condoms, which doesn't make sense (I'm not allergic to latex gloves, and the pain also comes when I'm getting fingered, when no condom is involved). She made me take a urine test, but I convinced her to prescribe me birth control again, because I thought it might help. The urine test came back negative, so she called me and I finally convinced her to prescribe me Elmiron. She made the prescription, but according to my pharmacy (and the FDA) it's backordered for a few months. This news was devastating.
Since then I've been taking Cystoprotek and the birth control pills while I wait for my appointment with the IC specialist in July. I also made an appointment with a physical therapist who specializes in treating chronic pelvic pain.
For the past few days my bladder pain has been UNBEARABLE. I lie in bed all day in tears because I'm too depressed to do anything else. I don't know if it's related to my period (which just came), or to the birth control.
Should I stop taking the birth control? I'm not sexually active and was only taking it for IC. And it doesn't seem to be helping. Also, is there anything I can do to stop the stinging pain in my bladder? I need something to hold me over until I see the IC specialist (his name is Christopher Payne and he's affiliated with Stanford. I've heard nothing but good things about him). I just want my life back. Any advice? I'll do ANYTHING to make this pain go away.
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