curious about PFD PT

[bunnymoomoo]

i've been doing a lot of research on the internet about PFD, it's relation to IC, as well as just my main symptoms (frequency and urgency, the feeling of not completely emptying bladder) and how they relate to both PFD and IC. i've found many interesting articles! i'm curious though, how many people on this site have had PT work done, what sort of improvement they've had with their symptoms (especially frequency and urgency symptoms, the feeling of not completely emptying bladder). what sort of symptoms did you have in the beginning, such as symptoms leading to the diagnosis of PFD? has anybody had success with PT that they believe it was PFD all along rather than IC? how bout anyone with vulvodynia having success with PT (i've read that this is a possible way to treat vulvodynia)?

~ bunny :bunny:

Some interesting links about PFD:
http://www.northshorelij.com/body.cfm?id=920
http://www.bio-medical.com/news_display.cfm?mode=INC&newsid=47
http://www.pelvicdysfunction.ca/
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11696740&dopt=Abstract
http://www.ic-network.com/guestlectures/weiss.html

i know there's a lot of links, but i find them all to be very encouraging!

[XoChelsey03Xo]

Well I'm going to PT right now for my pelvic floor muscle. I also have the beginning stages of vulvodynia. To be honest with you I haven't noticed a difference at all since I've been going to PT. Actually my PT hasn't given me any exercises to work on at home. I thougt that I was suppose to. I asked my uro and she said that since I have so much going on it might be taking my PT a while to get to the exercises. I don't really know, but I feel so much worse since I've started treatment. Chelsey

[Katrina]

I haven't had any help (that I am sure of) from PT with freuquncy, urgency, or bladder pain from PT but it wasn't my goal at the the time. I did get help with sex pain and burning. My biggest frustration with PT is that I was still having so many problems with IC and if I took breaks with my excerses I moved backwards. So it was never over because I always had the disease. Other than that I was very happy with the improvement. (yet to me that is a big complaint!) :grouphug:

[ibtracy]

Hi there. I just began physical therapy for PFD about 3 weeks ago. I go once a week, although my therapist wanted me to go 3x per week because my PFD is so severe. I can only afford 1x per week as I lost my job to IC in July. Anyways, it's too early for me to see any really big changes. When she re-aligned my tipped pelvis the first visit I did see a big change for about a week in my weak stream so it can and will help you if you're suffering from this diagnosis.

She did some bio-feedback testing and you're supposed to be a zero at resting stage and I was a 14, which basically means I'm walking around with my pelvic floor muscles clenched all the time and don't even know it. She measured my pelvic floor strength on her computer via electrodes and you're asked to flex (kegels) and hold well I can't hold for more than 2 seconds before my hold crashes to a screeching hault. She said for my age (32) I should have a pelvic floor strength of 45-50 and mine is a 13 so I have lots of therapy to do to get to where I should be. She started me on E-stim therapy last week which is electrical stimulation therapy and that really, really helped with the aftermath of sore muscles from all the PT exercises and stretching. I get to pick up my at home E-stim machine tomorrow during my next PT session. I hope I didn't scare or alarm you with the PT info, just thought I'd share some of what goes on in the first couple visits. I have PT stretches and therapy that I have to do on a daily basis and she can tell if I've been sick or haven't done them when I go to my next session - so they know. You can't cheat!

You have to find a physical therapist who's knowledgable obviously with IC/PFD so they know and can focus on that muscle group. My PT specializes in just the female pelvic area, incontinence, PFD, etc. So do some research or ask your urologist if you see one if he/she can recommend someone in your area.

If you have any questions, send me a private message and I'll do my best to answer it. I'm certain you'll get a lot of responses. Try to reach Sarojini on the boards, she's been through therapy longer than I have and is really starting to see some success she might be able to tell you goals/areas that I haven't reached yet. Send her a PM, I'm sure she'd be glad to talk to you about PT for PFD.

I wish you luck... ;)

Tracy K.

[ibtracy]

Keep in mind, you may feel worse with symptoms the first few visits you go because these muscles are used to being in their inproper positioning and it's hard for these muscles to learn to go back. It's a commitment to go to PT because like Katrina said if you get sick or take a break from therapy it sets you back so far and then it takes you that much longer to get back on track.

I highly recommend after PT, lots of warm baths/showers, laying down with a heating blanket and use it as an all over body heating pad, lots of water and lots of rest after each visit. You'll hear this alot too I'm sure...

Sorry I rambled on so, just wanted to give you so much information...

Tracy K.

[bunnymoomoo]

thank you very much for all the responses! i'm still trying to figure out what it is that is ailing me exactly. it is difficult sometimes ... my urologist had prescribed me L-Arginine because he "suspects" IC, and when i mentioned PFD/pelvic muscle tension, he mentioned doing kegels... i don't know that i agree with the kegels thing, having read articles stating that it is not neccessarily the first thing to try.

i've read so many articles about physicl therapy helping alleviate symptoms of frequency and urgency i was so hoping to talk to someone with this experience. though i understand that many ICers who undergo PT do it to help alleviate pain. and i'm sure that PT treatments are different for each individual based on what it is that needs to be addressed.

i feel scared ... just a little bit. everything in the pelvic area is so complicated it seems; i would just hate to be misdiagnosed ... i wouldn't want to take elmiron uneccessarily. and other than PFD and IC i don't know what else i could have.

well, thanks again everyone, for your responses! looking forward to reading more replies if there are any more to contribute!

~ bunny :bunny:

[Iris5]

There are different types of PT that you can try. You could try biofeedback and kegels. I did. I found out that they were horrible, increased my flares, and didn't help me one bit, and actually made my entire vulva feel like it was being pinched. After 6 weeks I stopped.

Now I do trigger point release therapy with Rhonda Kotarinos (see her guest lecture on this website.) Although the PT is painful while I am there, I always feel better when I leave. Sometimes I feel a little bruised or beat up the next day, but generally speaking I can feel that my muscles are more loose and relaxed, I have less pain, and less frequency. Urgency was never really a problem with me. But I used to have pain all across my pelvis. Now my pain is lessened and is restricted to a smaller area. Of course, I have a long way to go, and my PT is not over yet.

However, this may also be because I am generally pretty careful with my diet, take medications (pyridium, elmiron, macrobid, and detrol), and do yoga 3x a week. If you choose to do yoga, it's better to pick a gentle one like Iyengar or Hatha. But I have definitely seen a jumpstart since I started PT and yoga.

Hope this helps! Good luck!