October 2017 update: Since writing this post back in June 2013 I’ve had the pleasure of cyber meeting Dr Susie Gronski who specialises in male pelvic pain. Please follow the links or go to www.drsusie.com as she has a wealth of information and knowledge to share and she can belp you, even via your computer!
As many readers to the site will know I don’t encourage contact. I simply can’t maintain it, and most certainly most times I have had contact I can’t help but be drawn back into the dreaded sitting and typing position through feelings of compassion, empathy, or to communicate a new perspective or treatment in the hope of helping others with Pudendal Neuralgia (PN). Barry’s story, I felt was important to add to the site.
Most women with PN have felt lost at some point but as time goes on and word spreads, I believe treatment and understanding is more widely found for women. I’m not so sure for males though. I’ve had a few males battling PN contact me, and although they’re not in Barry’s end of the world I felt this email had to be shared.
Barry it’s been a pleasure to cyber meet you. Thank you for allowing me to share your story and thank you for alerting me to How do I know if I have PN or PNE?
Thank you so much for your kind response. If I remember you are not in the US . Either way I do understand the not wanting to talk. It seems most of my friends have disappeared. I know this is because people don’t want to be reminded about or hear about bad news or pain. Kind of a shame when you need love and support, just like in a divorce, it’s not there.
I have a wonderful 2nd wife now 18 years and without her I’d be gone. I use Facebook only to see some family pictures from Florida (my wifes family) I’ve lived here in Delaware since December 2011 and have not had a block since. I already had 6 Pudendal Nerve blocks and this after so many other procedures: 5 Ganglion Blocks, 6 Caudal Blocks, 2 Botox injections, 2 Radio Frequency Ablations, 2 Neurostimulator Trials, an Interstim Impant, and then the 6 Pudendal Nerve blocks.
Endless research and finally putting the right two words together on Google, opened up the world of Pudendal Neuralgia (Neuropathy) to us. That was near the end of December 2010. On the day after New Years and in response to two letters I sent to two Dr’s names I had found, I got calls from both Dr’s the same day.
The first one was supposed to be a well-known Neurosurgeon who claims to have been on Oprah and Dr Oz TV shows. He was once affiliated with Johns Hopkins. Here is where it gets bizarre. He told me that I definitely had PN and I needed to get the Pudendal Nerve Entrapment surgery immediately. With further discussion I learned that he was not on our Blue Cross Health Plan or any Insurance. Then I asked him how many he had done and he replied that he has done extensive research. Further chat revealed that all of his experience was on cadavers. I decided not to be his first live patient. This was so bizarre.
The 2nd, Dr Mark Conway from New Hampshire had been in France working with the Doctor there who pioneered the surgery. He was very compassionate and told me I’d need to have some testing at his office in New Hampshire. I had also contacted Dr. Stanley Antolak in Minnesota. He was much further away and Minnesota in the wintertime is brutal. He also had a whole network set up including a Physical Therapist, which for men there are basically none. This seems to be more prevalent in women.
My wife and I flew to Manchester New Hampshire. Dr Conway was actually an OB-GYN and man was that a weird feeling. When I saw him I asked how many of his patients were men and he replied about 40% from all over the US. He did some testing and diagnosed Pudendal Neuralgia. The same day, he arranged for me to have my 1st Pudendal Nerve block with Dr. Jorge Quesada at Eliot Hospital in Manchester, New Hampshire. We flew back to Maryland the next day. The block lasted about a month, so off I flew to New Hampshire again. In all I hit New Hampshire three times.
On December 2nd, 2011 I was scheduled for a full knee replacement in Delaware, and I was still in agony. There was no way I could do it and I could not get a flight to New Hampshire due to Thanksgiving and no seats available. Feeling helpless and being unable to walk, I had just about given up hope when a small miracle happened. A young lady (actually a Nurse in Virginia) I had been in contact with sent me an email with the name of Dr. Christian Muller, a radiologist that ran a pain clinic in Fairfax Virginia. I called his office and learned that he would do the Pudendal Nerve block. They got me in the day after Thanksgiving and he was a wonderful man. Although he does not believe in the Pudendal Neuralgia diagnosis (he keeps telling me it Non- Bacterial Prostatitis), he did the Pudendal block with a CAT scan for more accurate needle placement. This proved to be the best block yet. It got me thru the knee replacement and Physical Therapy and lasted about 6 months. Since then I’ve had the 5th and 6th Pudendal Nerve blocks with him. Now I have moved to Delaware and there is no one anywhere nearby, even in Philadelphia that will do this block. Dr Muller is a three hour drive, and as I said sitting is the hardest part.
Then I heard about the contaminated Nerve Block medicines that were in Massachusetts and that people were dying even a husband and wife, who had blocks the same day died. I think there had been mold growth in the medicine, and these people died very quickly. This combined with a very cracking lower spine from all these procedures, has me scared and on hold for now. I am somewhat improved, but I need the other knee done. In addition I will need the Interstim battery replaced in about a year, and there again is no one near here that can do it. It was implanted at George Washington Hospital’s Hospitals Pelvic Floor Center in Washington, DC – also a three hour plus ride and with no parking and no place to stay for the follow-up. In addition I have four kidney stones two on each side.
If you have gotten this far in this long email, I thank you for that. The frustration of being male, having few Doctors that believe in the diagnosis, and the inability to find a Physical Therapist that will work on a man, has left me with incomplete treatment and knowing there is no real cure. My family (other than wife) are not helpful as my brother constantly reminds me that at least it’s not cancer. I’m in my late 50’s and he is a 62-year-old Attorney with very few health issues.
I continue to hang in there. I am on Social Security Disability, and don’t get out much. My wife who is older is patient with me, but she has her own issues and recently retired. We sold our house in Maryland for a very low price and moved here to Delaware to what was a vacation type home. We love living here but finding Doctors is a huge problem.
Again, thanks for your time, and if there is ever anything I can do for you, please contact me.