Quitting PT after over 3 years

[rainbowbutterfly]

I have a growing suspicion I might never have developed PNE if I'd never gone to physical therapy. I started pelvic floor PT almost a year before developing pudendal neuralgia. In that first year I had IC but recovered 100%. Just as my bladder healed, the PNE started with my left, then went to my right, then back to my left, and now the right. My right nerve, after a year and a half of being FINE, was pinched by my PT two weeks ago and is fully awful again. She explained how it couldn't have been her treatment in a very nuanced way, and I believed her. I trusted her. Now I think she was full of it. I've been seeing her almost two years. She is definitely better than the first one. Anyway, she emailed me suggesting we stop because it's not helping. I think deep down she knows she screwed me over. It's bad enough dealing with leftie. It's one thing to have tight muscles, but someone poking around in there every week for 3 years? I'm so mad. I've been spending my parent's money just to get worse. Side note: I've never had biofeedback and someone working with me on muscle control. The "let me work out your knots" each week approach is garbage and a scam. It does not get rid of trigger points or overall tightness beyond at most a couple days. Anyone else feel the same? Should I quit for good? I'm trying a new PT tomorrow because she has biofeedback.

[Patty]

Welcome to my world. 18 months for me. Everybody kept telling me I was going to get better. PT urogynecologist vulvodynia specialist. Keep going you'll get better. While I think it was somewhat beneficial I finally had to tell them all no more. I spent over 8000 on this treatment....I don't get why none of them will take insurance and why is it so costly.
I just take my meds use my suppositories and grin and bear it.

[Violet M]

That's too bad PT didn't work for you gals. Thanks for posting your experiences. I suspect there will be people who will find your postings very helpful. I think every person is different and it's hard to predict how each person will respond to treatment.

I did not have the patience to try PT for very long, especially the internal PT which caused a major flare-up. My thoughts on PT are to try it for 6-12 sessions and if it seems to be helping, continue with it but if it's not helping or it's making you worse it may be time to move on. I guess one reason I say that amount of time is because I had a friend who spoke with one of the PN providers who told him you should know within 6 sessions whether PT is going to help or not.

Violet

[stephanies]

I have avoided internal PT for a long time due to the flares it has caused in the past along with zero success. My current PT told me a lot of muscle dysfunction that can possibly contribute to PN pain can be worked externally -- adductors, hamstrings, piriformis, gluts, etc. Then, if/when all of that is in better shape, we can try internal PT. We are still working externally. I also think time with a PT is a better measure than number of sessions. When I have gone to a PT that does not take insurance and I have paid for 1 session, I get a full 60 minutes of someone working on me. I am currently seeing a PT who takes insurance and the appointment is 45 minutes long -- 5 minute chat to start, 5 minutes to change and return to the room, 20 minutes of hands on work, 10 minutes of ice, then 5 minutes to change while she types up notes from the session. So 20 minutes of hands on time vs. 60 minutes. Although my 3 months of PT have not noticeably improved my pain, I have learned a lot and I still believe my PT is very knowledgeable and that there is potential. I also think it can take several months (especially with the shorter sessions) for the PT to get to know your body and start to put the pieces together about how to best treat you. I have decided to stick with her for a year and then re-evaluate as long as I am not have flares.

Patty, if I had a dollar for every PT/doctor/other medical professional who guaranteed me they could identify exactly what was causing my pain and could get me better, I would be a very rich woman. I understand how you feel. It is very disheartening and frustrating.

Stephanies