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Background: I had one UTI at age 8 or 9. When I became sexually active at 17 I had them very frequently even when I urinated after intercourse and they became excruciatingly painful and bloody.
Fast forward to last June when I was sexually assaulted by a minor. I started feeling like I had a UTI so I went to the ER and told them I thought I had a UTI and about the experience. They gave me every kind of anti-STI medication they could give me there, as well as antibiotics to take home. I had also just finished a large round of antibiotics for a number of cuts.
I took the antibiotics and it didn't help. I always felt like I had to pee and when I peed there was harldy anything. After I pee it felt worse than when my bladder was full...a burning sensation after I pee. I couldn't tell you if it's my bladder or urethra because the burning sensation is too general in the area.
I kept going back to the doctor and telling them, and they kept making me get cultures, wet mounts, pap smears, and STD tests. I did not have any STDs, I did not have any yeast infections, and I did not have any abnormal cell activities nor UTIs.
Finally my doctor referred me to a urologist. Unfortunately I have military healthcare (the worst) and had no choice but to see this guy. I started crying after one appointment when he basically said he had no idea what was wrong with me and wasn't going to give me anything for the pain--and that I'd have to wait a month for my next appointment with him to get a cystoscopy. He just stood there and basically said "too bad" while I sobbed. The doctors also suggested that my pain was psychosomatic--yet I was over the assault almost as soon as it happened because I was seeing a therapist.
The cystoscopy revealed that my bladder wall anatomically is okay, but I was having muscle spasms in my bladder. I read that people with IC may have worse spasms as a result of cystoscopy which I believe is definitely true. They gave me lidocaine and it was so painful I cried during the procedure.
I feel like my bladder started hurting even more after the cystoscopy. The urologist "thinks" I might have overactive bladder syndrome so he gave me ditropan. It literally did not help in ANY way. I had the same amount of bladder spasms. The only thing it did was practically annihilate me with its side effects and drowsiness. My mouth was drier than cotton mouth and my eyes burned like they'd never been drier in their life.
It is now approaching the one year mark, and I saw the urologist again. He once again said he can only guess what's wrong with me but he doesn't think I have IC. He also doesn't seem to even KNOW what IC is and that symptoms vary from person to person.
I saw women's health finally in March and that provider is the one who suggested I look into IC as a possible diagnosis, because I also have some other vaginal symptoms. I feel very dry often and during the times of the month when I have flare ups I get a white vaginal discharge that does NOT contain any yeast or bacteria. It is itchy on rare occassions but usually burns. That doctor thinks it is related to a hormonal imbalance, and possibly IC related. I only feel relief during my period and sometimes the week after. During the 2 weeks before my period it gets insanely bad. My urine also separates during the flare-ups in that when it's in the toilet, a dark sediment precipitates out and settles to the bottom right when I pee. It does not have an evenly distributed yellow color around the toilet--instead it is dark yellow in the bottom of the toilet where the bend starts, and clear in the basin.
The women's health provider suggested I take birth control and it only aggrevated my symptoms even at the lowest dose. My PCP and urologist are both males and don't seem to care at all or take me seriously how much pain I'm in.
So far the only thing that has helped completely mask my problems is percocet. When I'm on it I can't feel my bladder pain or spasms and I can function pretty normally. Muscle relaxers and antispasmodics do not help.
I'm at a loss. My two male providers refuse to even consider that I may have IC even though all my tests have proven everything else is negative. Because I live in Alaska I cannot see any providers except the ones in the base hospital. Emotionally and mentally this problem is severely impacting my life and the lack of healthCARE (keyword care) is increasingly driving me further into depression, especially because I am in physical pain all the time and no one believes me or listens to me.
Does this sound at all like your symptoms? I can't do this alone. My own father doesn't believe me either. I just want to know what's wrong with me because as of yet the diagnosis is "I don't know."
Fast forward to last June when I was sexually assaulted by a minor. I started feeling like I had a UTI so I went to the ER and told them I thought I had a UTI and about the experience. They gave me every kind of anti-STI medication they could give me there, as well as antibiotics to take home. I had also just finished a large round of antibiotics for a number of cuts.
I took the antibiotics and it didn't help. I always felt like I had to pee and when I peed there was harldy anything. After I pee it felt worse than when my bladder was full...a burning sensation after I pee. I couldn't tell you if it's my bladder or urethra because the burning sensation is too general in the area.
I kept going back to the doctor and telling them, and they kept making me get cultures, wet mounts, pap smears, and STD tests. I did not have any STDs, I did not have any yeast infections, and I did not have any abnormal cell activities nor UTIs.
Finally my doctor referred me to a urologist. Unfortunately I have military healthcare (the worst) and had no choice but to see this guy. I started crying after one appointment when he basically said he had no idea what was wrong with me and wasn't going to give me anything for the pain--and that I'd have to wait a month for my next appointment with him to get a cystoscopy. He just stood there and basically said "too bad" while I sobbed. The doctors also suggested that my pain was psychosomatic--yet I was over the assault almost as soon as it happened because I was seeing a therapist.
The cystoscopy revealed that my bladder wall anatomically is okay, but I was having muscle spasms in my bladder. I read that people with IC may have worse spasms as a result of cystoscopy which I believe is definitely true. They gave me lidocaine and it was so painful I cried during the procedure.
I feel like my bladder started hurting even more after the cystoscopy. The urologist "thinks" I might have overactive bladder syndrome so he gave me ditropan. It literally did not help in ANY way. I had the same amount of bladder spasms. The only thing it did was practically annihilate me with its side effects and drowsiness. My mouth was drier than cotton mouth and my eyes burned like they'd never been drier in their life.
It is now approaching the one year mark, and I saw the urologist again. He once again said he can only guess what's wrong with me but he doesn't think I have IC. He also doesn't seem to even KNOW what IC is and that symptoms vary from person to person.
I saw women's health finally in March and that provider is the one who suggested I look into IC as a possible diagnosis, because I also have some other vaginal symptoms. I feel very dry often and during the times of the month when I have flare ups I get a white vaginal discharge that does NOT contain any yeast or bacteria. It is itchy on rare occassions but usually burns. That doctor thinks it is related to a hormonal imbalance, and possibly IC related. I only feel relief during my period and sometimes the week after. During the 2 weeks before my period it gets insanely bad. My urine also separates during the flare-ups in that when it's in the toilet, a dark sediment precipitates out and settles to the bottom right when I pee. It does not have an evenly distributed yellow color around the toilet--instead it is dark yellow in the bottom of the toilet where the bend starts, and clear in the basin.
The women's health provider suggested I take birth control and it only aggrevated my symptoms even at the lowest dose. My PCP and urologist are both males and don't seem to care at all or take me seriously how much pain I'm in.
So far the only thing that has helped completely mask my problems is percocet. When I'm on it I can't feel my bladder pain or spasms and I can function pretty normally. Muscle relaxers and antispasmodics do not help.
I'm at a loss. My two male providers refuse to even consider that I may have IC even though all my tests have proven everything else is negative. Because I live in Alaska I cannot see any providers except the ones in the base hospital. Emotionally and mentally this problem is severely impacting my life and the lack of healthCARE (keyword care) is increasingly driving me further into depression, especially because I am in physical pain all the time and no one believes me or listens to me.
Does this sound at all like your symptoms? I can't do this alone. My own father doesn't believe me either. I just want to know what's wrong with me because as of yet the diagnosis is "I don't know."
Almost all of us have had to go from Dr. to Dr. to FINALLY be reffered to someone who can help, as many GP's have NO clue what is going on. I also had this in my case too (although not in the military) I went to at least 15 dr.s who told me to take naproxen and get on with life, or that I had a weak bladder. yeah right. My heart goes out to you! I hope you find some answers here, these people are incredible when you need them, as I have found out 
I can relateto one of your symptoms though the DISCHARGE. I constantly have this as well it never goes anywhere, its always thius white paste ick. Sometimes after I pee I look down in the toilet bowl and there are cloudy drops coming from my vagina (sorry graphic I know)...lol it drives me mental. It seems to get worse when I am flaring also, or if I eat something that might cause a flare. Sometimes i douche with vinegar and water and it helps. Mine doe not burn at all or cause me any problems (other than getting everywhere during sex).... its not a yeast infection or std or anything just what my body does I suppose. It also smells like potatoes, starchy like... which leads me to believe it has alot to do with yeast.
I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC. 
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