Did PT work for you?

[rosesitty]

I found that PT didn't help my PFD, it actually made it worse. Right now she's treating with soaking, stretching, and Valium during the day and Soma at night. I'd love to hear from anyone who felt the PT just didn't help them or made it worse. I know treatments aren't for everyone...it's just finding the right combination...which is probably the most frustrating part. Thanks everyone!
Stephanie:smile tee

[tacy99]

I have had great results from PT for the chronic pain and burning of PFD. I drive 90 min. each way twice a week and I also have traveled to Chicago twice for treatment with Rhonda Kotarinos (she is worth it)

[judyblue]

I have been to three therapy sessions and am looking forward to more. I am learning so much. My evaluation revealed severe weakness in the pelvic muscles, with some guarding and spasms. I have learned a great deal about what to do for strengthening the pelvic muscles, relaxation techniques, proper voiding strategies and we are now working on bladder retention. After that, I move on to biofeedback. My therapist uses a variety of modalities and she is very sensitive that I am comfortable throughout.

I think a lot of the benefit depends on the therapist. This is such a new area and I am sure there is wide variation in the therapists' knowledge base.

[sami4]

PFD helped my urethral spasms and pain immensley. I had no idea PFD could effect the urethra through referred pain.
Sammi

[mary124]

I have severe IC and PFD, worse case my therapist has seen in a long time, and after the first visit/exam she told me that she hopes she could help me but she really didn't think she can. After about 3 months, we had some success, but both of us decided that it really wasn't worth it to go on.

[kimaurk]

I have been doing physio now for 6 months on a weekly basis, sometimes 2X per week. Unfortunately I have found that when my phsio works in one area, then another area flares up...very frustrating!!! I am now just working on my SI (sacral iliac joint) on my right side as my doc won't do anymore tx till my right hip is stable. Then she will work on my pelvic floor.
I too have had a treatment from Rhonda K. She was here teaching physios about PFD and how to tx it. I didn't like it one bit. They did the marcaine injections after the physio!!! (No doc around). I toughed it out for the hour and a half and went home and cried!! It flared up everything for me I was sore for a long time after!! I bet though if I had tx in her center she wouldn't be near as intense as she was with me. She only had so much time to teach the physios. I'll think twice before being a "patient" for teaching purposes!! I do think though that physio is beneficial, but like its been said, its getting the right combination that works well for you.
Kim

[Carol Junco]

I have been on PFD therapy for about 2 months, and I am in more pain after each visit so I am quitting and trying to move on to something else. I guess it works for some and not others.

[Berkshire Road]

I tried the PFD therapy and it was agonizing. So I stopped. She found my trigger points all right, inside and out, but she made them worse. So I talked to my doctor about it and even though he's a big believer in PT for IC and related conditions, we agreed this was not a good course of treatment for me. Now I do relaxation exercises and guided meditation, and they are helpful.

[Bea]

I have done it for a month.. had to stop now cause have to wait for more visits given by insurance.. so far I am still agonizing in pain.. it also cost $20 every time I go and I feel like i am running out of money.. don't get me wrong.. I would give anything to rid this pain, but I just don't see it helping .. I wish my dh could do the myofacial release for me

[CarolinTexas]

My pain doc did all my trigger point injections (for previous back problems) under anesthesia. He said it was easier to get the muscle to release when the patient was asleep.

I wonder if they do the same thing for PFD trigger points.

[vivig14]

i had a nine year long struggle with IC and ultimately PFD. initially, i did not understand the two were linked for me. i think the tense muscles were aggravating the bladder, and i was doing guarding, etc. i saw many uros, one urogyn, a rehab medicine doc, and three PTs. i flew to NY and saw Dr. Moldwin for a consult. he "undiagnosed" me with IC (though i was diagnosed in '97 via hydro/cystoco) I was in chronic pain that i actually was unaware of for a long time until it dawned on me that there was no other explanation for my ongoing fatigue. it's like my painful body/pelvis became the norm.

I recommitted myself to finding the most knowledgeable professionals at this point in time (because lots has been discovered in the past several years). Actually, i always felt PT was the key to getting better for me. I felt relief with the first PT session with the first of my three PTs, though it did not cure me (and i went for seven months). I learned to identify the muscles, which was enormously helpful in describing my pain to other providers. The ultimate resolution for me came from PT with Rhonda Kotarinos. I am fortunate that I didn't have to move to see her, just travel out of my way to the Chicagoland suburbs and take off time from work. It was well worth it. She educated me about the condition, and helped me think about the sensations in my body in a different, and ultimately less alarming way. She taught me how to react differently, all while manipulating the h--- out of my trigger points. It hurt a lot, but so does my bladder/pelvic floor, and this was curative in the long run in all areas--urinary, sexual, etc. For the most part, after i committed to it, I told myself I would do everything she said, and I did even though sometimes I did not understand the assignments (she explained it, it just didn't really click until it did and it helped). I generally did not have bad aftereffects after a session though I was sore initially. I am pleased to say I'm almost completely off the IC diet for the first time in 9 years, and its great. I'm also running 4 days per week, granted at a slow pace, for 2-3 miles. that's something i cannot remember being able to do in my adult life...often b/c of how it felt for my bladder, pelvis, and b/c i was weak due to overall physical limitations.

While it may not be practical/doable/or affordable to get txed by one particular practitioner, i highly recommended looking into those PTs who have been trained by her. I also hear the program for Headache in the Pelvis is really good. I looked into that as well.

I wish you all the same success. :woohoo:

[littlemyrn]

I too suffered from PT for PFD. I would be crying for days after a session. My then uro said that was not possible would not write any kind of spasm meds and so I moved to a different URO. I told her what a disaster I had with PT and she asked who I was going to? I told her, she had never heard of this person and said it is so important to go to someone that is truly qualified in PFD. So now I want a tens unit and so she is sending me to who she believes is the best and they called this week to set up an appt. and they told me that they are an out of network dr. My ded. for that is $2000.00 I just can't do that and because they are out of network then the script for the tens would be out of pocket too. So I am calling my URO again and asking for help in finding someone else in network.

[Angeles]

I went to PT for 2 months. I've found that my Pelvic floor muscles are very tight. Therpist asked me to do Kegles. Then I had to stop b/c I couldn't do them right and they sent me into huge flares.
Then we tried to do biofeedback, but I couldn't do that either due to my recurrent vaginal infections or cream treatments for it. I went once a week for 2 months. The therapist ended up doing more massages since ther was not much to do with me. I Felt like I was stuck.
I try to do the meditation w/ guided imagery for pelvic floor on my own.
What else is there to do in Physical Therapy for PFD? Besides kegles and biofeedback????:confused:

[rosesitty]

They can work out trigger points, both externally and internally, my physical manipulation, but it can make things worse for some and better for others. They can straighten out the pelvis area and keep things in alignment, which again can make things worse or better. Just as medication doesn't work for all, I think PT is the same. I was committed for three months so see if it would help. I'm still convinced it's PFD, but don't know what to do about it, except take the muscle relaxers and soak every night. I agree it can be the PT, but I had an excellent one that came highly recommended. She worked closely with the uro/gyno in my care. When one thing made things worse or didn't work, she'd try something else. Even simple ultrasound wouldn't calm things down once she flared them up. Unfortunately, I'm left with the same symptoms I started with, but have a sore hip and back to go along with it. Hope you can find what works for you.
Stephanie

[Bea]

They can work out trigger points, both externally and internally, my physical manipulation, but it can make things worse for some and better for others. They can straighten out the pelvis area and keep things in alignment, which again can make things worse or better. Just as medication doesn't work for all, I think PT is the same. I was committed for three months so see if it would help. I'm still convinced it's PFD, but don't know what to do about it, except take the muscle relaxers and soak every night. I agree it can be the PT, but I had an excellent one that came highly recommended. She worked closely with the uro/gyno in my care. When one thing made things worse or didn't work, she'd try something else. Even simple ultrasound wouldn't calm things down once she flared them up. Unfortunately, I'm left with the same symptoms I started with, but have a sore hip and back to go along with it. Hope you can find what works for you.
Stephanie


I think I can almost copy what you said.. I know I have extreme pfd, I just don't know how not to be tense there.. and I have an amazing pfd therapist.. she stretches the muscles does relaxation.. exercise etc.. I hate this:cussing:

[judyblue]

Besides the work on pelvic floor muscles, bladder retraining has helped me alot and my therapist has given me great advice. She has required that I keep a voiding diary every week - which helped me to cut down on my "just in case" trips to the bathroom which were actually slowing my progress. She gave me detailed advice on how to relax to calm the bladder spasms on first impulse, to distract myself and wait out for a longer void. It helps if the PT knows as much about IC as PFD.

[froelica]

I just went to my second PT session today and - GREAT NEWS!

Last week, my resting muscle tone was at an average of 6.4 (0-2 is "normal"). This week it was at 4.4!!! After only one week! She said it was very impressive for that kind of response so early in the treatment. My PT said it looks like my body really wants to react to this treatment. :woohoo:

I hope its even better next week!

[Annie2]

Congrats, Froelica, on your rapid improvement! I'm another one having success with PT. My therapist started with gentle stretching exercises and after the first 2 wks. of doing them, I had significant improvement in my range of motion and decrease in spasms. Since I have colitis on top of IC, there is so much going on within my pelvis and my PFD had become pretty severe. A T.E.N.S. unit was also Rxed for me and helps some, too. The majority of my PFD pain is on my left side and includes my left lower pelvic region, left labia moving out into the upper thigh, lower buttocks and back of my left thigh. Today my therapist began working on trigger point release (no injections). She confirmed the muscles in those areas were spasming hard and there were lots of trigger points. This afternoon and tonight, for the first time in over a year and a half since I developed colitis, I have absolutely no pain in those previously tender areas and no need to use my TENS today, either!!!!! :woohoo: I am so thankful I found a physical therapist fairly close to my area (less than an hour's drive away) who is an expert and specializes in treating pelvic floor dysfunction!!! She certainly knows what she is doing and is helping me tremendously.

[froelica]

Annie- That's awesome! Isn't it a great feeling when something finally starts to work!! Hope at last :woohoo:

I hope your progress continues!