Health Organization for Pudendal Education

I just made an appointment with Dr a Conway for April. He is my last hope to find relief of this pain. The local pain clinic doctor nor urogynecologist think I have PN just a tight pelvic floor. No meds have helped and I'm fighting with the pharmacy about having my insurance pay for vaginal suppositories. I used to spend my winter planning ski weekends but for now I spend every waking hour dealing with pain and making appointments. It's doubtful I would let him operate but I figure it does not hurt to see what he has to say.

Are the vaginal valium suppositories being specially compounded? I tried that and the two different bases they tried just gave me yeast infections. Then Dr. Carillo (he has replaced Dr. Howard) had me just try inserting the pill itself. Works like a charm. You might find if the insurance company won't pay for the specially compounded vaginal suppositories they will pay for just the tablets. The tablets themselves are not that expensive if the insurance company still refuses to pay due to route of administration ie not by mouth but vagina.

Hi Patty,
I'm glad you got an appointment with Dr. Conway. Did you happen to schedule the EMG, too?
Kind regards,
Karyn

I assumed the EMG would be done the same day. Do I need to clarify that? I am taking a day off from work so I hope to get everything done in one trip. When I went back to the urogynecologist I ask her about just using the oral Valium internally and she sort off dismissed the question. I can ask her again as I have an appointment next week. My sense is she does not appreciate how much pain I am in.

Hi Patty,
Yes, you should call the office to confirm you've been scheduled for an EMG, first. Otherwise, you'll have to back another time.
Best wishes,
Karyn

Patty, are there any local pelvic floor physical therapists who can help confirm what your gynecologist is saying -- that you have a tight pelvic floor but not PN? It might be worth it to try myofascial release of the pelvic floor while you are waiting for your appointment with Dr. Conway. If it is just a tight pelvic floor the valium pills inserted vaginally could be very helpful since valium is a muscle relaxer. The pills are much cheaper than the suppositories. If you can find a PT locally who is experienced with PN and tight pelvic floors, they might be able to advocate with your doctor to get the valium prescription for you.

Violet

I've been in pelvic floor PT since 11/2013 My pain is just getting worse. My PT also made the statement that dr Conway diagnosis everybody with PN. I have made an appt with a new PT that urogynecologist recommended but I cannot in to see her until 4/2014. I need relief of this pain. I am starting to loose my mind....nobody gets it.

Hi Patty,
I understand how difficult it is trying to manage the pain. I'm really sorry you haven't found anything helpful, yet.
I wish you the best with your second round of PT, but please keep in mind that if you're looking for pain relief - that's something a Pain Management MD would handle. If your current prescriptions aren't effective, please discuss this with your PM doc ASAP!
I don't understand what the rationale is about your tight pelvic floor. Do you have musculoskeletal disorders contributing to this? Has endometriosis been ruled out?
IF it is your PF being in spasm, instead of an entrapment; it's possible that getting on the right medications for you may help with the PT being more effective.

Patty wrote: My PT also made the statement that dr Conway diagnosis everybody with PN.

Not sure what she means by this. Is she implying that she's had clients who were diagnosed by him, but the diagnosis was inaccurate?
I am aware of several chronic pain patients that never made it past the phone consultation with him.
Hugs,
Karyn

Patty, have you tried a heating pad yet to help relax the muscles? What about ice balloons inserted vaginally? Kept me from going insane many times. Just trying to brainstorm everything that I remember helping.

Violet

How do I make an ice balloon bag violet? Although my imagination is running wild right now I went to my PCP. He is adding in Topamax to the regimen. He also tried to call my urogynecologist but she was not in.