Dr Conway

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Patty
Posts: 158
Joined: Sun Feb 16, 2014 2:14 pm

Dr Conway

Post by Patty »

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.
nyt
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Joined: Sun Oct 31, 2010 3:24 am

Re: Dr Conway

Post by nyt »

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.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Dr Conway

Post by Karyn »

Hi Patty,
I'm glad you got an appointment with Dr. Conway. Did you happen to schedule the EMG, too?
Kind regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Patty
Posts: 158
Joined: Sun Feb 16, 2014 2:14 pm

Re: Dr Conway

Post by Patty »

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.
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Dr Conway

Post by Karyn »

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
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Violet M
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Location: United States
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Re: Dr Conway

Post by Violet M »

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
Last edited by Violet M on Sun Feb 23, 2014 10:52 pm, edited 1 time in total.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Patty
Posts: 158
Joined: Sun Feb 16, 2014 2:14 pm

Re: Dr Conway

Post by Patty »

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.
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Dr Conway

Post by Karyn »

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
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
User avatar
Violet M
Posts: 6713
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Dr Conway

Post by Violet M »

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
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Patty
Posts: 158
Joined: Sun Feb 16, 2014 2:14 pm

Re: Dr Conway

Post by Patty »

How do I make an ice balloon bag violet? Although my imagination is running wild right now :mrgreen: 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.
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