Welcome Megan,
I know it is scary but one good thing is you are in an early stage and are already finding your way to diagnosis. There is hope and PT is a great place to start (hopefully a PT aware PT like on the home page?). Also check out the FAQs for good info and medicines that could help calm the pain so you can stop panics and focus on a plan to treat this. Take care
Janet
75 % better, maybe more
Re: 75 % better, maybe more
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: 75 % better, maybe more
Hello Megan,
It is scary when you first discover that you might have PN but you have a lot of options and many people get better so try to focus on your treatment options and getting the right treatment. It's impossible to predict what the final outcome will be but it sounds like you may be on the right track now. Is your PT knowledgeable about pudendal neuralgia?
Best,
Violet
It is scary when you first discover that you might have PN but you have a lot of options and many people get better so try to focus on your treatment options and getting the right treatment. It's impossible to predict what the final outcome will be but it sounds like you may be on the right track now. Is your PT knowledgeable about pudendal neuralgia?
Best,
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: 75 % better, maybe more
Hi Megan
I'm so sorry you have had to join the rest of us, BUT there is hope. First, try to relax. Yeah, I know that's hard but I find if I'm going nuts over something, the burning comes back or gets worse.
If you're in the US, I would find a PN doc that you can discuss this PN with. Personally, I like Dr. Conway in NH. He is well versed and returns calls as soon as he has a chance. He can guide you the rest of the way. It took me months to finally diagnose myself and then have Dr. Conway agree. Once that was done, all kinds of choices opened up. I've noticed since my surgery, 11/11 there are many more choices.
I can't say about PT because it didn't work for me but that may have been just because she was focusing on the wrong area. I don't go to one now. I'm doing pretty well on my own. It's been almost 20 months and the last 6 have had some real changes. Hey, I got on the motorcycle for a 15 min ride two days ago!!. I did not have to go to bed afterwards. My right leg ached a bit.
Please see about a doc so you can continue forward.
Regards;
Doreen
I'm so sorry you have had to join the rest of us, BUT there is hope. First, try to relax. Yeah, I know that's hard but I find if I'm going nuts over something, the burning comes back or gets worse.
If you're in the US, I would find a PN doc that you can discuss this PN with. Personally, I like Dr. Conway in NH. He is well versed and returns calls as soon as he has a chance. He can guide you the rest of the way. It took me months to finally diagnose myself and then have Dr. Conway agree. Once that was done, all kinds of choices opened up. I've noticed since my surgery, 11/11 there are many more choices.
I can't say about PT because it didn't work for me but that may have been just because she was focusing on the wrong area. I don't go to one now. I'm doing pretty well on my own. It's been almost 20 months and the last 6 have had some real changes. Hey, I got on the motorcycle for a 15 min ride two days ago!!. I did not have to go to bed afterwards. My right leg ached a bit.
Please see about a doc so you can continue forward.
Regards;
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
Re: 75 % better, maybe more
Doreen, I had to laugh about the motorcycle. Never pictured you that way 
but I'm glad to hear it. 
Violet
but I'm glad to hear it. 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: 75 % better, maybe more
Violet;
It's been my goal from day one to get back on the bike. 64 with a 20 year old body trying to break through all of the wrinkles
Doreen
It's been my goal from day one to get back on the bike. 64 with a 20 year old body trying to break through all of the wrinkles
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
Re: 75 % better, maybe more
Doreen ,
So happy for u that u r doin well!!! It gives us hope that maybe things can get better. Thx for sharing.
Michelle
Shana,
I live in Phx so I've only gone to dr Hibner. With more n more people getting this he is extremely busy. It takes forever to get in to see him. I've had pne and pn for lol over six yrs now n when I first saw Hibner he was busy but could get in right away now it's a different story. I really like Hibner n think he's a good dr. He has a lot of sympathyand empathy and a lot of knowledge. He has done 2 pudendal decompression surgeries on me and I think he's the only dr that does redo pudendal surgeries. He knows me n I know him and I trust him. Plus he's not in it for the money like a lot of drs are. He works for the hospital. He's not his own seperate practice where they can charge u an arm n a leg. N if u decide to come to Phx I would be more than willing to help u anyway I can. The thing with surgery is u have to be down n no activity for awhile. N like Doreen, I'm some what active n have a 6 yr old son so I couldn't just lay around all the time. But tried to lay down as much as possible. My advice is do what's best for u n don't let anyone pressure or decide for u. It's ur body n u only know how u feel.
Michelle
So happy for u that u r doin well!!! It gives us hope that maybe things can get better. Thx for sharing.
Michelle
Shana,
I live in Phx so I've only gone to dr Hibner. With more n more people getting this he is extremely busy. It takes forever to get in to see him. I've had pne and pn for lol over six yrs now n when I first saw Hibner he was busy but could get in right away now it's a different story. I really like Hibner n think he's a good dr. He has a lot of sympathyand empathy and a lot of knowledge. He has done 2 pudendal decompression surgeries on me and I think he's the only dr that does redo pudendal surgeries. He knows me n I know him and I trust him. Plus he's not in it for the money like a lot of drs are. He works for the hospital. He's not his own seperate practice where they can charge u an arm n a leg. N if u decide to come to Phx I would be more than willing to help u anyway I can. The thing with surgery is u have to be down n no activity for awhile. N like Doreen, I'm some what active n have a 6 yr old son so I couldn't just lay around all the time. But tried to lay down as much as possible. My advice is do what's best for u n don't let anyone pressure or decide for u. It's ur body n u only know how u feel.
Michelle