Susan P.
06-01-2008, 05:15 AM
Hi, I am new to the group, having posted a hysterectomy question on the Menopause section.
My success story is with Lowell Parsons' (MD) holding protocol. I have had IC for 23 years, diagnosed back when no one had a clue about it. I remember freaking out in the early days...peeing every few minutes...I was in a job that required driving around, and knew where every bathroom was. I remember well the fear and anxiety when I realized I might not be able to work. A few years went by and I finally saw Dr. Parsons, who is an international expert on IC. He wanted to do all these treatments (mainly bladder instillations and also enter me in a study) but for me, I found that the more I went to the Dr.s office, the worse I felt. It just brought the problem to the forefront of my mind every time I waited in the waiting room. I remember asking him if I did not get treatment, would the IC get worse, and he said no, that the treatments were mainly for symptom management. So he taught me the holding protocol which he and another guy (I think it was a social worker) were working on. It involves the idea that the more often we answer the bladder's call to pee, the more it will tell us to pee. So I had to put off the urge as long as possible...wait a minute, then 2 minutes, then 5 minutes, then 10 minutes, etc., until I could get to a reasonable voiding interval. Regarding night time peeing, try to tell if it is really a full bladder (then get up) or if it is just the bladder fooling me, try to ignore it and go back to sleep. You guys, this REALLY has helped me. First, for some reason, I thought that when I felt I had to pee, I had to go right away to get that urine out of there. Not true. Now, years later, I do not have any urgency, and when I pee, I usually (not always, I still get fooled sometimes) have a normal amount of urine. And although I think I pee a bit more often than others, I do not have the ridiculous frequency that I had years ago. I do have mild pelvic pain (sometimes worse than others...I know what can flare it), but I think the holding protocol actually made my bladder better too.
Because I am doing so well, I am freaked out about an impending hysterectomy (see my other post). But I wanted to share this with you in hopes that it would help someone. I do remember the horrible pain and frequency of IC and do not want to go back there!
S.
My success story is with Lowell Parsons' (MD) holding protocol. I have had IC for 23 years, diagnosed back when no one had a clue about it. I remember freaking out in the early days...peeing every few minutes...I was in a job that required driving around, and knew where every bathroom was. I remember well the fear and anxiety when I realized I might not be able to work. A few years went by and I finally saw Dr. Parsons, who is an international expert on IC. He wanted to do all these treatments (mainly bladder instillations and also enter me in a study) but for me, I found that the more I went to the Dr.s office, the worse I felt. It just brought the problem to the forefront of my mind every time I waited in the waiting room. I remember asking him if I did not get treatment, would the IC get worse, and he said no, that the treatments were mainly for symptom management. So he taught me the holding protocol which he and another guy (I think it was a social worker) were working on. It involves the idea that the more often we answer the bladder's call to pee, the more it will tell us to pee. So I had to put off the urge as long as possible...wait a minute, then 2 minutes, then 5 minutes, then 10 minutes, etc., until I could get to a reasonable voiding interval. Regarding night time peeing, try to tell if it is really a full bladder (then get up) or if it is just the bladder fooling me, try to ignore it and go back to sleep. You guys, this REALLY has helped me. First, for some reason, I thought that when I felt I had to pee, I had to go right away to get that urine out of there. Not true. Now, years later, I do not have any urgency, and when I pee, I usually (not always, I still get fooled sometimes) have a normal amount of urine. And although I think I pee a bit more often than others, I do not have the ridiculous frequency that I had years ago. I do have mild pelvic pain (sometimes worse than others...I know what can flare it), but I think the holding protocol actually made my bladder better too.
Because I am doing so well, I am freaked out about an impending hysterectomy (see my other post). But I wanted to share this with you in hopes that it would help someone. I do remember the horrible pain and frequency of IC and do not want to go back there!
S.