Doing well - cystoprotek + Dr. Doggweiler + PT

[HB]

I've had IC for 10 years, I've tried a lot of things that worked for a while but that next flare was always around the corner - and I never knew what would cause one. I've always felt I was at the mercy of my IC - I could be "good" and follow the IC diet but if I got stressed out, a flare would occur.

The past year, I've had quite good success with taking cystoprotek - the bladder irritation has been much less since I've been taking it . However, last fall I went on a business trip when I was not feeling well. I should have known better but I pushed myself and regretted it. I had the worst flare I've ever had - I was absolutely miserable and in a hotel wishing I had put my health first instead of my job. I was hitting rock bottom, but I guess sometimes you have to do that to start crawling back up because that was the reason I sought out the help of a new Urologist when I got back home.

I was blessed to find a great urologist - Dr. Doggweiler (she is in Knoxville, TN). She is so nice and very understanding. After a urodynamics test, Dr. Doggweiler put me on the path of dealing with my pelvic floor muscles. If you had asked me before I went to see her if I thought I had pelvic floor muscle problems... I would have said No, I have IC. Little did I know that I had tension or "tone" in my pelvic floor muscles which was really causing me a lot of problems.

I now believe that my IC has 2 parts. One part is bladder irritation, the other part is pelvic floor muscle tension. I have learned to relax my PF over the past several months and my frequency and urgency have improved so much. Until I went to Dr. Doggweiler, I only addressed the bladder irritation part of IC. Now I address both the irritation part and the pelvic floor tension. The pelvic floor tension also has several components, relaxing the muscles, strengthening the muscles and releasing the trigger points that are causing tension in my abdomen. I feel like I have been given a new life. My approach to dealing with my IC still includes avoiding bladder irritation (I use Prelief when I eat/drink), taking cystoprotek and aloe.
The new parts of my IC treatment are:
1) relaxation (not keeping my muscles in perpetual tightend state)
2) doing Kegels correctly
3) treating/releasing my trigger points

It's taken MONTHS to get where I am...but I think I have most of it right. I've still got a long way to go but I have improved so much that I wanted to post this in case anyone else could benefit from my experiences.

I want to encourage others to consider that even if they don't THINK they have pelvic floor muscle tension to get evaluated by a Urologist and/or PT who specializes in that area. I did not think I had Pelvic Floor tension, but I did. I am so glad that I finally got the proper medical attention that I unknowingly but so deperately needed.

[addie]

Thanks for your post. I just had my first appointment with a PT that I really liked. I was always skeptical about pelvic floor dysfunction (I think it was partly the name, it makes me think of sexual dysfunction, and I have a real problem with that term. I do NOT have a sexual problem, I have a Pain problem. It just so happens that the pain usually occurs with sexual intercourse.)
I previously had doctors and another PT suggest using dilators, and I was very resistant to that idea. It didn't make sense to me why they would work, and I thought they were only used for vaginismus, which I don't have. Plus, I did biofeedback therapy for almost five months, which involves inserting a probe twice a day, so if that didn't work, why would using a dilator work? How does just inserting something, which is painful, help make the pain go away? Anyway, it's like this new PT finally explained things in a way that made sense to me. She also uses a different approach. Instead of inserting a probe twice a day, it's twice a week, and using it to hit specific points to release certain parts of the muscle. This is combined with the PT doing internal trigger point release. That makes sense to me! Just like when I go to my massage therapist, he works on trigger points in my back, and has me do daily stretches to maintain the work he does. I'm really glad I found this PT, and very hopeful that it will make a difference.

[jen74]

I just went to my first PT appoimtment last Monday. I have to say, I have been sooooo sick and in pain since going. My bladder went into a HUGE flare and my bowels are not working well, I am very constipated and bloated. I have pre-exsisting digestive issues with my motility and something has made it much worse, not sure what.
ANyhow, I like my therapist, she is really nice. She had me doing some stretching exceises and maybe that is what has made me so much worse I dont know. I am not ready to give up on it yet, just that I may have to back off for a while until my stomach calms down. I think PT is good for alot of people, but also it can make some people worse I guess. I think it all depends on what else you have going on as well, like other health issues. I have very bad muscle pain ( wide spread). Any amount of excerise sends me in extreme pain afterwards for days. I walk everyday and get my excercise that way, but the bending and stuff is just horrible for me. I hope things will calm down so I can continue the PT, just that I will have to go much slower.
Jen
Jen

[elsie3205]

Helen, I am in Knoxville and going to start PT. Who is your physical therapist? I'm not sure who to use.
Thanks.