Discussions By Condition: Urinary conditions

19 yr old girl suffering from mystery disease

Posted In: Urinary conditions 4 Replies
  • Posted By: EllieM
  • March 30, 2010
  • 05:18 AM

Hi, I am a 19-year-old female, and I am currently grappling with a painful mystery illness. My symptoms first started May of 2009. One day out of the blue, I started urinating every hour, and I had to get up to use the bathroom several times per night. Soon after, I started feeling as though I had to urgently use the bathroom all the time, and, even when I relieved myself, the horribly tingly feeling in my urethra was still there. The pain became unbearable, and one night, my mom took me to the hospital. Percoset became my only way of coping.

A week later, my urologist looked inside my bladder. He thought I had interstitial cystitis, and he claimed that, if he was right, there would be a lot of tearing inside the wall of my bladder. Upon inspection, my bladder seemed perfectly normal; the only significant finding was that my urethra was slightly constricted. After that, I started to feel better, and I thought I was healed. However, the symptoms came back. My urologist still claimed I had interstitial cystitis, even though he had no evidence to support his claim. I went to a new urologist who told me that the diagnosis was irrelevant; he would try different drug therapies until I felt better.

Of all the medications I've tried, the only one that has helped is Urelle. However, it's been many months since I started taking it, and, at this point, I'm not sure how great of an impact it has. I still feel the need to urinate frequently, and my urethra still has a slight burning sensation. My urine burns when it comes out, and I have hesitation. In other words, I have to push in order for my urine to come out. I haven't had an uninterrupted night of sleep in almost a year now. I also feel achy in my pelvis sometimes, almost like period cramps.

Please help. I've gone to so many doctors, and no one can figure out what's wrong with me. Most of the doctors I've gone to agree that I don't have interstitial cystitis; they just don't know what I really DO have. Before you ask, I was treated for a urinary tract infection at the beginning, and it didn't help. I also do not have any STDs.

Any ideas would be wonderful!

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4 Replies:

  • IC does not necessarily cause tearing in the bladder wall. It is typically an inflammation in the bladder, and does not cause scarring in EVERYONE that has it. IC is different for different people, and can often go undiagnosed because of a lack of physical damage to the bladder. Often it is impossible to diagnose IC unless you are having a flare up at the time of the cystoscopy. I am 21 and certain I have IC - I started getting symptoms 4 years ago and went through horrible bouts of antibiotics and tests and poking and prodding and random pain and pills upon pills upon pills. Finally, the urologist performed a cystoscopy and... told me it was all in my head, so I stopped wasting my money and started self-treating. I've found that Aleve works excellently for the inflammation and fairly well for the pain. Pyridium (Sold OTC under the brand name AZO) might help you with the urgency.Hi, I am a 19-year-old female, and I am currently grappling with a painful mystery illness. My symptoms first started May of 2009. One day out of the blue, I started urinating every hour, and I had to get up to use the bathroom several times per night. Soon after, I started feeling as though I had to urgently use the bathroom all the time, and, even when I relieved myself, the horribly tingly feeling in my urethra was still there. The pain became unbearable, and one night, my mom took me to the hospital. Percoset became my only way of coping.A week later, my urologist looked inside my bladder. He thought I had interstitial cystitis, and he claimed that, if he was right, there would be a lot of tearing inside the wall of my bladder. Upon inspection, my bladder seemed perfectly normal; the only significant finding was that my urethra was slightly constricted. After that, I started to feel better, and I thought I was healed. However, the symptoms came back. My urologist still claimed I had interstitial cystitis, even though he had no evidence to support his claim. I went to a new urologist who told me that the diagnosis was irrelevant; he would try different drug therapies until I felt better.Of all the medications I've tried, the only one that has helped is Urelle. However, it's been many months since I started taking it, and, at this point, I'm not sure how great of an impact it has. I still feel the need to urinate frequently, and my urethra still has a slight burning sensation. My urine burns when it comes out, and I have hesitation. In other words, I have to push in order for my urine to come out. I haven't had an uninterrupted night of sleep in almost a year now. I also feel achy in my pelvis sometimes, almost like period cramps.Please help. I've gone to so many doctors, and no one can figure out what's wrong with me. Most of the doctors I've gone to agree that I don't have interstitial cystitis; they just don't know what I really DO have. Before you ask, I was treated for a urinary tract infection at the beginning, and it didn't help. I also do not have any STDs.Any ideas would be wonderful!
    Anonymous 42789 Replies Flag this Response
  • Hi, I am a 19-year-old female, and I am currently grappling with a painful mystery illness.. Hi Ellie, I'm 18, and I've had the exact same thing as you for the past 2 years, with no help whatsovever. I have your symptoms, plus more that affect my life even worse than urine thing does, but it all started the day after I lost my virginity. I felt it was a UTI, I wasn't sure what was going on as I was a virgin and so was my boyfriend. I was also told it was IC, but it wasn't, my bladder was perfect. Long story short, now two years on, I'm still nowhere but they think it might be vulvodynia which can cause pelvic pain and burning etc like you described. I really hope you get this reply, it'd be lovely to chat to someone who has the same feelings, it's such an irritating thing to live with. I really hope you have got everything sorted, if not, then I'd love to hear from you on this to see how you are getting on, Alana x
    alanasomething 1 Replies
    • September 13, 2010
    • 02:46 AM
    • 0
    Flag this Response
  • Hi, I am a 19-year-old female, and I am currently grappling with a painful mystery illness. My symptoms first started May of 2009. One day out of the blue, I started urinating every hour, and I had to get up to use the bathroom several times per night. Soon after, I started feeling as though I had to urgently use the bathroom all the time, and, even when I relieved myself, the horribly tingly feeling in my urethra was still there. The pain became unbearable, and one night, my mom took me to the hospital. Percoset became my only way of coping.A week later, my urologist looked inside my bladder. He thought I had interstitial cystitis, and he claimed that, if he was right, there would be a lot of tearing inside the wall of my bladder. Upon inspection, my bladder seemed perfectly normal; the only significant finding was that my urethra was slightly constricted. After that, I started to feel better, and I thought I was healed. However, the symptoms came back. My urologist still claimed I had interstitial cystitis, even though he had no evidence to support his claim. I went to a new urologist who told me that the diagnosis was irrelevant; he would try different drug therapies until I felt better.Of all the medications I've tried, the only one that has helped is Urelle. However, it's been many months since I started taking it, and, at this point, I'm not sure how great of an impact it has. I still feel the need to urinate frequently, and my urethra still has a slight burning sensation. My urine burns when it comes out, and I have hesitation. In other words, I have to push in order for my urine to come out. I haven't had an uninterrupted night of sleep in almost a year now. I also feel achy in my pelvis sometimes, almost like period cramps.Please help. I've gone to so many doctors, and no one can figure out what's wrong with me. Most of the doctors I've gone to agree that I don't have interstitial cystitis; they just don't know what I really DO have. Before you ask, I was treated for a urinary tract infection at the beginning, and it didn't help. I also do not have any STDs.Any ideas would be wonderful!Have any of these doctors done a hydrodistention on you? A standard cystoscopy usually will not show interstitial cystitis. During a hydrodistention, which is done under general anesthetic, the bladder is filled with water and overstretched. Then the doctor looks at the bladder wall through a cystoscope. If you have IC, there will be visible tears (and sometimes ulcers) in the bladder lining that bleed. This test also determines your bladder's capacity. With IC, the bladder can become scarred and unable to stretch very far.
    pingpong1953 5 Replies
    • January 4, 2011
    • 11:25 PM
    • 0
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  • I NEVER had a UTI until I lost my virginity...and ever since then I've had what has felt like a perpetual UTI. Every time I go to the doctor my urine shows signs of bacteria, so the give me an antibiotic, but the usually say "oh it's only a SLIGHT infection." Three times they DID do a culture twice it was negative once it was enterococcus. I am at a loss and I think I must have IC. The only thing that's weird is that it only started after I started having sex and it only flares up when my husband and I have sex. Side note...I have Lyme disease and have seen from various sources that it is tied to IC. If you have IC, you should see a Lyme Literate Doctor (LLMD) to get checked for Lyme; a reg doc will have no idea what you are talking about! Not that knowing I have Lyme has helped me at all will what I think is IC. I am at a loss on what to do for a cure, but I have a feeling it must be related to my Lyme. 1. Anyone else out there have Lyme? (You might have it without knowing it! Google the symptoms.)2. Anyone else have flare ups with sex? Or only have this start AFTER the first time they had sex? (Like me and another person on this thread.)3. Anyone with IC have smelly urine (like me) even though docs say IC isn't an infection?
    Anonymous 42789 Replies Flag this Response
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