New to all of this.

[MiraRamsay2012]

Hi everyone. My name is Molly, I live in Oregon.

I have a LOT of pelvic pain conditions, and possible MS (tests being done this month) and now it looks like I have PN as well. No entrapment yet, though. Just the neuralgia. When I was diagnosed, my main symptom was a knife-like sensation right around my vagina and rectum. But now during flares, it feels like buzzing/tingling all in a "U" shape from my tailbone, to rectum, to vagina and labia. It's terribly uncomfortable and I don't know how to help make it stop.

My main question, I guess, is how do I keep this from getting worse? I can walk now, can sit for about 10 minutes at a time, but I'm terrified that one day I won't be able to walk or sit at all. I'm not on any medicines and can't find a doctor who treats this (I just moved from Arizona where I was seeing Dr. Hibbner's associate).

What medicines should I be considering to treat the tingling/buzzing?

[Yvonne F]

Hi, I am a newbie too. Just joined today. I live in Colorado. I found one Dr. listed from this website that is in Denver and plan to see her, when I can.
If you have to wait any length of time you may want to see another Dr. that can give you some to help you until you get into your scheduled appointment.
I was so filled with anxiety that I knew I needed something NOW, so I have a combination of meds, one of them is the same one used for restless leg syndrome and helps with anxiety too. I hope you get some relief. I just started going over to our community gym and ride on the recumbent bike and listen to uplifting music.
I pray you feel better.

[Violet M]

Hi Molly,

I'm sorry to hear about your new diagnosis. Do you and your doctors feel that your pudendal neuralgia is independent of MS or caused by posssible MS? If you do have PN, there is a good chance your pelvic floor muscles are in spasm. Some people have found Botox helpful for that.

Some of the different drugs that help with pudendal neuralgia symptoms are lyrica, gabapentin, tegretol, clonazepam (or other benzos), antidepressants, muscle relaxants such as baclofen, and narcotics. There are probably others but those are the main ones we hear about around here.

If the tingling is near the surface topical ointments might help. There are different combos of meds such as gabapentin, baclofen, ketamine, and lidocaine that come in these creams. Ice gel packs are very good at numbing the area and some people even make frozen condoms or balloons filled with ultrasound gel or a mixture of rubbing alcohol and water to insert vaginally.

Violet

[MiraRamsay2012]

I no longer have a doctor for PN. I moved to Oregon and there aren't any specialists up here. I don't take anything at the moment because as long as I don't sit for a long time or do something crazy like ride a bike or run, my symptoms are usually very mild. I have a test for my optic nerve on Tuesday and that will be a good clue whether I have MS or not.

[Violet M]

Hope it's not MS. Good luck.

Violet

[neopeius]

Hi Molly. I'm in the same boat you are--I can keep the symptoms minimal, but I worry that I won't get better or that it will be easy to make them worse.

I guess we'll see! Hopefully, someone on this board was in our place several years ago and is now better... except those folks never seem to come back once they improve.

[mary jane]

do you also have vulvodynia besides PN ?? I have the stabbing and buzzing as well !!!!!!!!!

[hrm34@nau.edu]

At first (Aug 27 2013) the hospital said it was Cuadia Equina but I had none of the problems that would indicate such (stinosis, ruptured disk, tumor) I had two MRI's both of which came back normal with one doctor calling my spine textbook like. Being frustrated I found out that the problem was caused by cycle riding (I rode a lot) There are all kinds of doctors out there who call this problem with different names but are referring to the same thing. There is however a doctor who was struck with the same problem and wrote a book (now on its sixth edition) now with another doctor, both doctors are at Stanford Univ. now in the 12 years worth of research. I am not taking any meds. I have had no surgery and all of a sudden I am getting better. The book. "A Headache In The Pelvis" by Doctors Wise and Anderson. Get the book! I had to order it online because I could not get it at a book store. They don't carry it. I am beginning to wonder if the Med Industry does not want this out there. I am now seeing a therapist who specializes in pelvic floor therapy and teaching me how to stretch which is also something I did not do before. I hope to be back on the bike with a different saddle soon. I have also found four competitive cyclists that had this same problem of numbness in the saddle area, urinary and sexual dysfunction. Riding a bike, per many of the articles I have read, puts me 61% more likely to have pudendal nerve entrapment of even irritation. The problem is relatively new in the medical world and can have all the symptoms or only some, or even more frustrating some of the symptoms come and go which is frustrating to doctors because they can not pin point this to just one mechanical factor. I understood first that women usually only get this due to child birth, of some type of surgery down there. Med would only encounter this problem because of the prostate. Which by the way is another name many urologists are calling this, mine included (nonbacterial prostititus, bacterial prostititus, abacterial prostititus) and in turn give all kinds of meds that will only help the bacterial kind of prostititus but still leave the problems with all the other symptoms such as numbness, burning, lack of sensitivity during sex, and a lot more. I have found nearly 20 different names related to this very same problem that doctors use. No wonder why there is so much confusion. Bottom line, what I have learned is that there is the pudendal nerve that runs through the Alcock or pudendal nerve tunnel and then it branches out into the inferior annus (you guessed it, you feel that at the sphincter), the perenial (between the annus and the scrotum or vagina for women) and the dorsal which goes to the penis or the clitoris. The pudendal also runs around the obterator inturnis muscle and when it is inflamed you get the nerve pain and the other symptoms. I will be staying off the bike for a while and take up salsa lessons with my wife. When I ride again my new saddle will have a large opening in the middle so not to constrict the nerves and blood flow.
I hope this helps
I'm doing better! My understanding has created a great relief which also in turn has helped me to relax my pelvic muscles even more.

[neopeius]

What are/were your symptoms, and what has been the timeline of your recovery?

Thanks!

[Violet M]

Dr. Wise's protocol and the Headache in the Pelvis book have been discussed many times on the PN forums. The protocols of stretching, paradoxical relaxation, and myofascial release work for some people but not everyone. There are people who have posted that they spent a lot of money and time on Dr. Wise's protocol with no improvement so just like everything else, it's not a guarantee but it's certainly worth a try.

hrm -- I wonder if you might want your username changed so that your private e-mail isn't out there in the public domain. Send me a PM if you want your username changed.

Best,

Violet