View Full Version : its been a long time.
02-19-2005, 03:54 PM
im back. i doubt any of you remember me, but oh well. im just here to i guess update. i think i havent been on here in a couple of months! I had a bladder testing done and potassium sensitivity test done about 2 months ago. I do not have IC nor do I have pelvic floor dysfunction. he says i have the opposite of it. my doctor never gave me a specific thing I have so I still after 2 years left with no answers to what I have. I am off all medications which at first was quite scary but now all the side effects went away and knwoing that i dont need medicine is ok. my frequency is still high at 15 times a day and 2 at night and urgency still is there. I am doing biofeedback at physical therapy. its i think my six session the other day. im not sure if its helping, but i guess ill have to see. she has given me lots of excersises and tips to use, so ihave been doing that. I also am seeing a pyschotherapist which is in a way helping me. my doctor says this feeling of urgency will never go away. I still cant get over that, seeing that i am only 16 and have a trillion years to live. I am just couting down the days I can get out of high school, so i dont have to worry and stress 24/7. I just hope one day I can finally put a name to what I have.
02-19-2005, 04:24 PM
It's been a long time since I've been on here too. I go on every now and then, though. It must be difficult dealing with this on top of high school and everything else. I know it was scary for me to hear that it is something that will never go away when I'm only 24, and hardly anyone knows much about whatever it is that I have. I too wasn't given a full diagnosis of IC, but instead Painful Bladder Syndome. Which to me was like saying, here is something just to keep you occupied if you want a name for it and if you are lucky it will not progress.
It sounds like the psychotherapist is helpful, if only he/she could take away the symptoms that would be great, huh!
Let me tell you something about my story, hoping that it will be of some use or help to you.
In May I went to the uro and they told me I have Painful Bladder Syndrome and not "yet" IC. I refused to go on meds because I did not believe that one day I am fine and the next day I'm having the most unbelievable UTi symptoms I've ever had and they will not go away for the life of me. So I did what I could meanwhile, staying on "the diet", detoxing (doing all kinds of things my boyfriend thought was weird...I thought it was a little crazy too, but I figured what choice do I have if the doctors don't even know what to do). I found out alot of information that was helpful and now I am about 98% better, with the help a few people, but the nurse practioner I saw who specializes in this (and is now sypmtoms free herself for several years) really helped and I'm sure will continue to do so (but I've only gone to one appointment because I'm waiting for some results to come in). I guess what I'm saying is this is definitely a scary thing to go through, wondering when can you just get a break and feel normal again and I hope it does for you! There are those who get better and do not progress! If you want information on the NP or just information in general to point you in the right direction of things, let me know and I'd be more than happy point you there! :)
02-20-2005, 04:56 AM
It's great that you don't have IC but it really SUCKS that you don't have a diagnosis!!! You may want to try getting a second opinion. In my case the first and third opinions I got were right and the second opinion was wrong. Some doctors are reluctant to diagnose pediatric patients with IC because they don't believe that IC is possible in pediatric patients. I clearly have IC, two doctors have confirmed it. However, one pediatric urologist told me, "I wouldn't give a person of your age such a life sentence." Maybe the doctors that you have seen up till now just don't want to give you that "life sentence." I'm still really ticked off at that doctor....it isn't the doctor giving you the disease....the doctor gives you a diagnosis. Anyways, you may want to try seeing an adult urologist, if you've only been seeing pediatric doctors. For some reason unkown to me, the pediatric doctors have issues with diagnosing children with adult diseases. I think they are stuck in a box and the thought that a teenage girl can possibly get this horrid disease truly scares them. Mainly, because everything they learned about age limitations on certain diseases in med school crashes down. Suddenly everyone is vulnerable. I think it is sooo weird cause like 20yrs ago IC was not common at all. The other day I was talking to my best friend on the phone, she lives far away, and she told me that one of her new friends has IC. What a coincidence?! Anyways, I think this whole IC diagnosis is creepy and misunderstood. Well, I'm gonna go now....I have to go and babysit soon...
I've learned through several different medical conditions, that when a doctor says you'll just have to live with it, that you should go see another doctor (in a practice unrelated to him/her), don't give the new doctor the name of the first one, til after the new diagnosis (unless it's required to get referral in) so they have no agenda to try to "protect" the first doctor from a possible error. (That's a long & unpleasant story, so I'll spare you the gory details on that one).
I am glad you're much better & hope your improvement continues & continues!
02-22-2005, 09:03 AM
Hey, I remember you. You're my age :)
If it makes you feel any better, I'm in about the same situation you're in... but my health insurance just ran out. My frequency is about 15 times per day, and although I don't go at night, I'm still in constant pain 24/7. http://pages.prodigy.net/rogerlori1/emoticons/disappointed.gif
A nurse told me that she "thinks" I "may" have PFD, but that was two months ago. Now I have no way to go see a doc. I also worry that my feeling of urinary urgency and pain will never go away.
I guess all we can do is hang in there and wait :grouphug:
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