PFD Diagnosis now.

[rhea]

OK-went to see uro yesterday to discuss up coming cysto/hydro/dmso..etc. and explained to him some other problems I was having. Well..he did an exam and told me that not only does it look like I am not getting enough estrogen in my body but that I have a severe case of PFD....UGHHH :headbang: I mean come on. Anyways, he doesn't even want to discuss treatment options until I have the cysto so my question is this, for those of you who have PFD what has worked well for you and what hasn't? I woud like to be informed when next he and I meet for this problem so I am looking for as much information I can get. THANKS IN ADVANCE!!!! :grouphug:

[JenG]

Hi Rhea,
Sorry to hear about your trouble. :grouphug:
I have PFD as well, it also started off very severe. My pelvic muscles were completely tightened and in spasm. What has helped me is the pelvic floor therapy I have been doing once a week at my docs office. He has a biofeedback set up, conected to vaginal probes. You insert the probe and tense and relax your muscles (ten seconds each) for around 7-10 minutes. Then he connects it to an electronic stimulation device and it stimulates your pelvic floor muscles (vaginally again) for another 10 minutes. Then back to the tensing and relaxing for another 10 minutes. This has really started to soften my muscles and have lessened the spasms. The good news is it is not difficult or painful to do. :) The bad news is you have to keep up with it. I started going less and less, every two to three weeks, and my muscles tightened up and started spazing again!! :mad:
So back to once a week it is for me!
Good luck and let me know how it goes!

[Sarojini]

I went to physical therapy for PFD for about six months -- now I do all the exercises at home (aside from the biofeedback thing JenG talks about) and can pretty much keep the PFD from acting up too much, unless my IC flares... then the PFD flares with it, and I do the PT stretches I'm supposed to. I also take a muscle relaxant as needed to help out.

[kelly McC]

for me pt caused long flares so I decided to go with the tens unit so far so good. We are all different in what helps us. I still see my pt but not as much..
Kelly

[Katrina]

:grouphug: Drect Lidocaine and focussing on relaxing and slowly strengthening those muscles. For us with IC...the relaxing is vital!

[lindy lou]

I was dx with PFD about 3 weeks ago. I go once a week for myofascial release, internal vaginal massage, and started instillations of a Sanctura cocktail last week. The RN wants me to do the biofeedback like Jenny described but my insurance won't pay the $600 for a home unit. We may start it in the office to see if it really helps, then I will buy the unit for home. I ordered a set of vaginal dilators to stretch my PF muscles but they haven't come yet. I also use Estrace cream at night and am supposed to take a low dose of valium before sex. I haven't tried the sex part yet, too afraid of pain. I did notice some improvement with pain and urgency/frequency for a couple of days after my treatment last week. I wished that I had asked about PFD earlier in my treatment regimen. Six months of waiting for the elmiron to work was not the way to go. Guess we have to be our own advocates.

Linda

[rhea]

:kissing: :grouphug: Thank you to everyone for your replies!!! Now when I go back in to see the doc won't feel like a moron and like Linda stated be able to be my own advocate!!!