Considering Physical Therapy--What to ask?

[CareBear]

Hey everyone! I read an article on the ICN site about the benefits of PT for IC and pelvic floor dysfunction. I am going to ask my doc about it. What do I look for in a therapist? Does anyone have treatment protocols I can bring with me? I tried PT three years ago and the therapist told me she really didn't know what to do. She started a treatment protocol for incontinence, which really consisted of me doing a lot of kegels--didn't really do much for me. Can anyone help??????? Thanks!!! Cari

[mallenajolie]

I went through this treatment. They have you perform kegels in an attempt it will help with pelvic relaxation. It helped somewhat. I lapsed a little, and am now getting back to performing the exercises recommended. They also focus on excerises which help relax your pelvis. Kegels do help me when my retention is really bad, so I guess it does help with the relaxation, as long as you do it right.

[XoChelsey03Xo]

My uro has a PA that works with IC patients. She does a lot of this type of stuff. My uro was telling me she'd give me different exercises to do to help strengthen up my muscles in my pelvic area. Hopefully it will help me with some of the pain. Chelsey

[Just Mary]

my pt also consits of "myofacial?" massage. That is where the therapist massages your internal pelvic muscles. I know-sounds strange, but I just ignored it. She also massaged my muscles over my hip bones. Ouch-they are tight!
We also did biofeedback to show me how to relax and do a prober keigle - which I had know idea where the propper muscles were.

This therapist has a specialty in "women's health" .

[Iris5]

CareBear -
You're from Chicago, like me! I have just the person for you - Rhonda Kotarinos in Oak Brook. She specializes in people with pelvic floor dysfunction, and especially IC patients, like us. She has also been one of the guest lecturers on the ICN website. I have only done about 8-10 sessions (2 months), and am already seeing improvements. She does the sort of therapy that Mary Johnson described - internal and external massage, AKA trigger point release AKA myofascial massage. You will need a prescription from your doctor. If you can't get one, you may want to switch doctors. A good one is Dr. Brubaker and Dr. Fitzgerald from Loyola Univ. Medical Center in Chicago (actually it might be Maywood). They specialize in IC too and are urogynecologists. Very few PT's know how to properly treat IC, and if they don't what they're doing, can actually aggravate your symptoms.

I tried doing biofeedback therapy via my old urologist, and it didn't help my symptoms. In fact, it made things worse because my whole genital area was irritated. But with my new therapy, I am actually improving and am seeing hope for the first time in 18 months.

I also recently started yoga, and that may be helping too. I hope thise helps! Good Luck!

[mallenajolie]

My PT did the same type of things with the biofeedback and relaxation, and also with the myofacial massage. She trains PTs throughout the nation. Mine was in MI

[ICLori]

Just had PT done - stopped going after a few sessions. I asked very pointedly, after I learned through biofeedback/examination that I had no tender points, no pelvic floor dysfunction etc if anyone has ever been helped with IC by these exercises, or cured of IC by doing kegels, and I was told "no." I thought - it's not helping me, I don't need it, it's voodoo that the docs give you because they don't know how to REALLY help you. If you want to do it, fine - but there will probably not be any noticeable benefit. I have yet to hear of an IC patient cured by kegels - although if they have pelvic floor dysfunction along with IC they can certainly be helped by a PT. But if your pelvic floor muscles are just fine and it's your bladder that is a mess - kegels won't heal an IC bladder, I don't care what they say about strong pelvic muscles leading to general improved health.

I am sooo tired of docs making us do things that don't help us. Really tired of it. One suggested yoga! I suppose next they will be requiring us to undergo therapy with healing crystals. Voodoo, that's what my urogyn calls all of this, and that is what I think it all is. Nothing that really works. But it's good to go just to prove to the docs that it really IS your bladder and not the pelvic floor muscles that are the problem.

Blessings, Lori

[mallenajolie]

Hi Lori:

I was sent for PFT more to aid my severe retention thearpy. My bladder has gone into such severe retention, hospitalized and they hemmoraged. My uro sent me more for that and the pain I expereience with the retention than for IC. I was told right out at the start by the PT that she may be able to help the retention, but not IC related pain. Many patients with IC have retention.
My goes has high as a liter/ and freezes up.

[ICLori]

Oh, I'm so sorry to hear that! That must be so awful. You have so much more pain when you retain, plus there is a higher chance of infections, etc.

I think that PT will definitely be able to help you with the retention, in fact I am sure of it!

It's just that I am disappointed with my recent PT experience, when I realized that they had nothing really to offer me for IC, except a TENS unit which I will have to go back to a doctor to ask for anyway, which they could not as a PT just give me a prescription for.

I just wish there were easy, workable solutions for IC. I wish that I weren't in the position of either having to live with the symptoms or else accept very risky experimental therapy or else have my bladder removed.

And I'm still mad at the doctors who think, if you just think happy thoughts (yoga, etc.) you won't have IC anymore.

Blessings, Lori

[CareBear]

Thanks for the advice everyone. Iris, I talked to Rhonda--she is way too far away for me to travel, but she referred me to a Women's PT practice that's pretty close. Now I just have to figure all this out with my HMO and my doc. I also have some pretty extensive scar tissue that's causing more pain and problems that my bladder. The last PT I had did some myofacial massage to try to loosen up the tight scar tissue. I also remember her doing some E-stim and that was good too. :) I don't currently have a urologist because all the Uro's in my area are quacks and my lovely HMO doesn't give me much choice---I wish we could afford the PPO, but we can't.

Blessings to all,

Cari

[PikkuMyy]

Mine does external massages to my trigger points as well as internal massages to them. I have about 12 really bad spots. THen, I have a set of various leg and hip muscles stretches to do at home. I also had to buy a acrylic dildo, which was actually designed for prostate massage for men with such problems, that I use to do the internal massages myself. (with fingers, you can't get enough leverage) It's already helping and it's funny because I initially went to get a TENS unit but now I don't need one anymore. She said that I should just need a few more sessions, and then to continue the exercises at home myself. but it's looking like I don't have IC, just PFD.

[ICLori]

Pikkumyy, that's wonderful! PFD is soooo easily treatable compared to IC. Are you already back to being quite comfortable? I hope so! If not, maybe just another week or two of massages/exercises!

I was kind of bummed out when it was shown I didn't have any trigger points/spasming/PFD. It was all just my bladder.

BUT - my uro has another possible theory as to what might be contributing to my pain - endometriosis on the outside of my bladder possibly. I do have endometriosis, been operated on twice to remove a bunch of little implants, but I don't know if I have it on my bladder or not. Seems to me it would be cyclical like my other endo was if I did...not all the time with some months of remission after going on Elmiron....so I'm doubtful...but boy it would be great if it were endo in my case and they could fix it.

That's every IC'ers dream - that they find out they don't really have IC after all, just some other, more treatable condition! I'm so happy for you!

Blessings, Lori

[CareBear]

I went to see my PCP Doc this morning and he is writing the script for PT and to the practice I reqested--which only does Women's issues-types PT. AND they are close to my home!

:) :) :)

Cari

[PikkuMyy]

Thanks for the encouragement, Lori. Yes, I am so greatful to be almost rid of symptoms after 4 years.

Cari - glad to hear it! My therapist does men and women but she's a woman, which I really wanted. Let us know how it goes. I felt like I was in an awful flare during the first internal massage but it went away within about 10 minutes after she stopped. She also let me rest with a really hot heating pad on my pelvis/back for about 10 minutes after we were done which really helped.