PT for PFD recommended

PT for PFD was recommended to me recently after some testing by a gastro and neurologist. I had gone to ths clinic a few years ago when I had an anal manometry and a defecography test where they literally watch your rectum while you evacuate a paste that they put in. I was told back then that I had a small, insignificant rectocele. I had no such testing this time- for some reason the doctor is saying that the rectocele is resolved but to my knowledge it must still be there. After I went there 5 years ago they recommended a two-week pelvic floor retraining program at their clinic but I was unable to go through with it because it is pretty expensive and my insurance wouldn't cover it because it was coded as biofeedback. If only they would have coded it as muscle retraining or something else then it probably would have been covered.

So I ended up going to a couple of local PTs who dealt with women's issues. But they seemed to think that my pain and issues were more likely due to adhesions.The therapy consisted of deep breathing and postural exercises but they did not help. I have been going to a medically-oriented massage therapist once every 6 weeks or so and she also says I have a lot of restrictions due to adhesions. The massage helps some although she cannot do any internal work. My left vaginal area feels twisted and tethered down and I can feel the effects into the buttock and back leg. That started after my LAVH in 1998 along with fistula-like symptoms for which I was unable to get a diagnosis. I also get spells of a burning, vulodynia-like feeling in that left vaginal area which travels down the back of the leg since the hysterectomy. I also have difficult, incomplete evacuation, IBS and urinary urgency which I have had since 1984.

I spoke with a PT at the clinic. She gave me the codes so I could check with my insurance about coverage which I have not yet done. She said that insurance was getting better at covering it. She said their success rate was 70% with this therapy. If my insurance will cover it I will likely try it but I do have some doubts about it. I told the PT what the other PTs said about adhesions and she just kind of winced and if I remember she said that adhesions could only be diagnosed via laparoscopy and that was the end of that subject. She said that the therapy was intense and exhausting- and that some patients who had planned to go shopping afterwards were so worn out that all they wanted to do after the therapy was go back to their motel and sleep.

So it sounds like the therapy is pretty intense. My main concern is that if it doesn't work then they will blame me for not doing my part- non-compliance- rather than considering that it either wasn't the right treatment, or just not enough in my case, especially if adhesions might be a factor. I know that one of the local PTs I saw blamed me when the deep breathing and postural exercises didn't work. And it will require taking 2 weeks off from work which is OK if the treatment does end up helping.

From what I've been reading online, a lot of patients seem to have multiple issues- IBS, Interstitial Cystitis or other bladder problems, leg pain, vulvodynia and they all most likely have a shared cause. It sounds like PFD could be the main factor but I still wonder about the possible role of adhesions- and if they could interfere with how effective Pelvic Floor Retraining is. But unfortunately, nobody at this clinic- be it a Dr. or a PT- wants to discuss that possibility. And I would be very peeved if I worked hard to make the therapy work and ended up being blamed for it if it failed to provide relief.

I will be interested to hear how your PFD therapy goes!

I have some symptoms on my left side- I suspect I have some vaginal adhesions that tie my buttock, vaginal and thigh area together. I did have some neurologic testing recently where there was some question about my S1 nerve root but they decided that it didn't mean anything. I get bouts of left-side vaginal burning that travels down the back of the leg into my toes.

I also was told I likely had Pelvic Floor dysfunction and was recommended to go through a 2-week course of pelvic floor retraining. It was recommended to me several years ago but my insurance wouldn't cover it since it was coded as biofeedback and the out-of-pocket cost was very high and not worth the money for something that might not even help. I assume that you will be doing the same type of training where they supposedly retrain and eventually loosen up what could be tight, spasming pelvic floor muscles.

I have not yet made a decision as to whether I will do the therapy and haven't checked with my iinsurance. The physical therapist I spoke with said that insurance was getting better at covering it. It sounds like the therapy is quite an undertaking and can be very intense and exhausting and you have to continue it afterwards at home to get the full benefit. My concern is that if I have adhesions contributing that it could affect the outcome of the therapy and if it doesn't work then I will be blamed for supposed non-compliance. I've had this happen with physical therapists and doctors before. It's like they prefer to blame the patient rather than admit that the prescribed treatment wasn't what the patient needed. I did mention adhesions to the PT (I've been to 3 of them in the past few years and they all said my problem was likely due to adhesions) but neither she nor any of the doctors I saw would consider them.

Well, after checking with my insurance, it turns out that they will not cover this therapy- saying that it was 'investigational'. This same thing happened 5 years ago at the same, well-known clinic. I don't think that they should make any final recommendations until you know if your insurance will cover it. And the costs for the therapy is anywhere from around $7,000.00 to over $9,000.00 (plus lodging costs)so most of us can't afford it. I guess I should have asked if there was a back-up plan- like maybe trying some kind of an injection- if the therapy wasn't covered. I certainly doubt that I am the only patient at this clinic whose insurance wouldn't cover it and think they'd have some alternative recommendation in cases like this.

I know that I've read stories on PFD by a Dr. whose speciality is IC where he said that this therapy could be coded as muscle pain therapy to get better coverage. I did mention this at the clinic I went to but apparently they won't do that.

Good to know all of this as some of us head down this path. Thanks for sharing.