Hello everyone. And thank God for this site. I have been suffering for 5 years with what I am almost positive is pudendal neuralgia. I have seen various colorectal surgeons, gastroenterologists, and urologists, had physical therapy and tried several muscle relaxers and antidepressants. The "diagnosis" so far has been "muscle spasms". But no doctor can explain what is causing the muscle spasms. When my PT realized that what she was doing was not going to solve my problems, she suggested my pudendal nerve could be the cause. I have suspected this myself for a while too, as the symptoms seem to match up, and the pain--a constant raw burning sensation--seems characteristic of neuralgia.
Having bounced around from doctor to doctor for 5 years with no relief of symptoms, I'm starting to think that I really need to see a specialist, someone who knows about this disorder. I live in Connecticut, so it seems that the closest specialist is Dr. Quesada. What I'm wondering is, How do I get this ball rolling? Has anyone traveled to see Dr. Quesada from out of state? Does he require a referral? How can I find out if my insurance would cover the visit? If it doesn't, would being treated at Dr. Quesada's clinic even be possible from a financial perspective? It makes me feel hopeful that there are doctors like Quesada out there. But I'm also nervous that I'll be unable to take advantage of their expertise. And like I said, I believe I haven't even been properly diagnosed yet.
Any advice anyone could share would be greatly appreciated. Thanks, and God bless!
Looking for advice...
Re: Looking for advice...
Welcome to HOPE and I am so sorry to here that you have been having problems for 5 years. Like many of us, bounced from dr. to dr. trying to get the right diagnosis.
I would recommend you see Dr. Conway first. He will do the nerve conduction testing and physical evaluation. If he thinks you have PNE then he refer you to Dr. Quesada for the blocks.
Another option is Dr. Howard in Rochester, NY. He will do an exam, no nerve conduction studies. He will refer you to Dr. Westesson for any nerve blocks he thinks you would need.
Contact information for both of these dr.'s is on the main HOPE information pages. Both dr.'s see patients from out of state. When you call the office tell them the type of insurance you have and they will be able to tell you whether they participate with your insurance or not. If they don't participate then you need to contact your insurance company to see how they pay for out of network providers and if they would pay at an in network rate because there are only a few pudendal specialists in the US.
I would recommend you see Dr. Conway first. He will do the nerve conduction testing and physical evaluation. If he thinks you have PNE then he refer you to Dr. Quesada for the blocks.
Another option is Dr. Howard in Rochester, NY. He will do an exam, no nerve conduction studies. He will refer you to Dr. Westesson for any nerve blocks he thinks you would need.
Contact information for both of these dr.'s is on the main HOPE information pages. Both dr.'s see patients from out of state. When you call the office tell them the type of insurance you have and they will be able to tell you whether they participate with your insurance or not. If they don't participate then you need to contact your insurance company to see how they pay for out of network providers and if they would pay at an in network rate because there are only a few pudendal specialists in the US.
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
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
Re: Looking for advice...
Hello Emmet,
Welcome to HOPE. Five years is a long time but hopefully you are on the right track now.
One option would be for you to see Dr. Hollis Potter in NYC for a 3T MRI. The advantage of this option is that it's completely non-invasive with no risk of injury to the pudendal nerve. There are no published statistics on how accurate this test is but the number of anecdotal reports of it being accurate are continuing to increase.
It's also important to have an exam from a PN specialist and at some point you may need a diagnostic pudendal nerve block. I know some people who have gotten worse from nerve blocks so you probably don't want to have any more of these than is absolutely necessary.
Most of the PN specialists have contact info that is listed on the pudendalhope.org website. Not sure which ones require a referral but that should be easy to get from your primary care doc if you have one.
Best wishes,
Violet
Welcome to HOPE. Five years is a long time but hopefully you are on the right track now.
One option would be for you to see Dr. Hollis Potter in NYC for a 3T MRI. The advantage of this option is that it's completely non-invasive with no risk of injury to the pudendal nerve. There are no published statistics on how accurate this test is but the number of anecdotal reports of it being accurate are continuing to increase.
It's also important to have an exam from a PN specialist and at some point you may need a diagnostic pudendal nerve block. I know some people who have gotten worse from nerve blocks so you probably don't want to have any more of these than is absolutely necessary.
Most of the PN specialists have contact info that is listed on the pudendalhope.org website. Not sure which ones require a referral but that should be easy to get from your primary care doc if you have one.
Best wishes,
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.
Re: Looking for advice...
Welcome, Emmet. Dr. Conway is actually the PNE surgeon in New Hampshire; Dr. Quesada is just the person who gives the blocks and does other pain management for their team.
It sounds like you will have to travel for sure, so in my opinion it's worth figuring out which doctor is the best for you rather than just which one is the absolute closest, if that makes sense. They all have different methods and philosophies, and some are newer to PNE or a given treatment while others are more experienced.
It sounds like you will have to travel for sure, so in my opinion it's worth figuring out which doctor is the best for you rather than just which one is the absolute closest, if that makes sense. They all have different methods and philosophies, and some are newer to PNE or a given treatment while others are more experienced.
Last edited by Celeste on Mon Jun 13, 2011 2:46 pm, edited 1 time in total.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
Re: Looking for advice...
Welcome to HOPE, Emmett!
Parts of your story sound very similar to mine. I'm from the Boston area and bounced from specialist to specialist looking for an accurate diagnosis for years. I was also repeatedly informed I had "myofacia of the pelvic muscles ... mysterious origin/reason unknown"; a/k/a MPPS (Myofacial Pelvic Pain Syndrome. I kept insisting that muscles don't clench up and go into spasm for no reason, but they were very comfortable with the "mystery diagnosis". No one wanted to even entertain the notion of nerve involvement. As in your case, it was my PT who accurately diagnosed the PN. She sent weekly reports to the Boston Specialists I was seeing at the time, but they were dismissed and she was thought of as incompetent. It wasn't until I found Dr. Conway that I got my PT's diagnosis confirmed. Further confirmation of nerve entrapment was obtained by going to NYC for a 3T MRI with Dr. Potter.
Your first step should be connecting with a PN specialist. Dr. Conway would be a good choice geographically and he is a very knowledgeable, compassionate doctor. If you decide to contact him, you would call his office (603-883-3365) to request a phone consultation. He usually calls you back within 2 - 3 weeks and he's very pleasant to speak with. After that, you'd schedule an appointment to meet with him for an exam and EMG testing. I highly recommend the trip to NY for the 3T MRI. It's possible to obtain a script from Dr. Conway, but if you don't want to wait that long, do you have a physician who would write the orders for you?
I do know that Dr. Conway and Dr. Quesada accept most insurance plans. What type of insurance do you have?
I'm glad you found us, Emmett and wish you the best with getting a proper diagnosis. You're on the right track and we're here to help!
Warm regards,
Karyn
Parts of your story sound very similar to mine. I'm from the Boston area and bounced from specialist to specialist looking for an accurate diagnosis for years. I was also repeatedly informed I had "myofacia of the pelvic muscles ... mysterious origin/reason unknown"; a/k/a MPPS (Myofacial Pelvic Pain Syndrome. I kept insisting that muscles don't clench up and go into spasm for no reason, but they were very comfortable with the "mystery diagnosis". No one wanted to even entertain the notion of nerve involvement. As in your case, it was my PT who accurately diagnosed the PN. She sent weekly reports to the Boston Specialists I was seeing at the time, but they were dismissed and she was thought of as incompetent. It wasn't until I found Dr. Conway that I got my PT's diagnosis confirmed. Further confirmation of nerve entrapment was obtained by going to NYC for a 3T MRI with Dr. Potter.
Your first step should be connecting with a PN specialist. Dr. Conway would be a good choice geographically and he is a very knowledgeable, compassionate doctor. If you decide to contact him, you would call his office (603-883-3365) to request a phone consultation. He usually calls you back within 2 - 3 weeks and he's very pleasant to speak with. After that, you'd schedule an appointment to meet with him for an exam and EMG testing. I highly recommend the trip to NY for the 3T MRI. It's possible to obtain a script from Dr. Conway, but if you don't want to wait that long, do you have a physician who would write the orders for you?
Celeste wrote:Dr. Conway is actually the PNE surgeon in New Hampshire; Dr. Quesada is just the person who gives the blocks and does other pain management for their team.
This is correct. Dr. Quesada's office won't even speak to you unless you have a referral.nyt wrote:I would recommend you see Dr. Conway first. He will do the nerve conduction testing and physical evaluation. If he thinks you have PNE then he refer you to Dr. Quesada for the blocks.
I do know that Dr. Conway and Dr. Quesada accept most insurance plans. What type of insurance do you have?
I'm glad you found us, Emmett and wish you the best with getting a proper diagnosis. You're on the right track and we're here to help!
Warm 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.
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.
Re: Looking for advice...
Thank you so much everyone for the replies, and for welcoming me. You are all such courageous people, and I feel some comfort in knowing I am not alone in this. The insurance I have is Connecticare. I called them and it sounds like I would be covered at least partially. I gave Dr. Conway's clinic a call and he is supposed to get back to me for a phone consult. Again, thanks so much for the advice on this. I really am overdue to see a pudendal nerve specialist, but I feel I am at least on the right path now. Thanks again!