Health Organization for Pudendal Education

Hi everyone,
I am new to this forum. I was never diagnosed with pudendal neuralgia but after finding this website I think I have it. I never heard of it before. About 13 years ago I developed and was diagnosed with vulvadynia. It started as severe dryness and irritation and morphed into a chronic pain. I haven't been able to wear fitted pants since then... just really loose sweats or skirts. I tried lots of things from accupuncture to flexeril, etc. and decided to go to a pain doc in NYC who gave me a ganglion of Impar block. Well... I have had horrible problems since then. It never helped with the vulvadynia. It gave me chronic stabbing pain at the site of the injection and half a year later I went on Lyrica because the pain was so bad. During the Lyrica I developed painful sensory nerve pain through my whole body. The doctor said it wasnt the lyrica and to stay on it so it can start working and upped the dose to 350mg a day. After 3 months the pain was so bad I stopped the Lyrica. Now I am left with the same old vulvadynia, a piercing pain in the coccyx area and horrible, makes you understand why people kill themselves kind of nerve pain thru body that doesn't even let me sleep. My arms and legs and feet and hands go thru cycles of burning and pins and needles and vibrations. I just don't know what to do next. I am trying vitamins like B6 B12, alpha lipoic acid, natural vitamin E, vitamin D. I'm eating an all organic diet. I haven't seen anything positive yet. Anyone have any ideas, words of wisdom, help of any kind? I feel like every minute of every day is such a struggle and so depressing. I have small children so suicide is not an option. Instead I have to live in chronic torture and feel like I'm getting PTSD from it all. I have never posted on a site before but tonight I just had a feeling it was the right thing to do... sorry to be long winded.... but after reading some of your posts I feel really close to you all. Thanks for listening!

oh and I forgot to say I did recently try a fentanyl patch and it did not help and a 4 day ketamine infusion and it did not help either. An MRI did show a 5mm cyst or hemangioma about where the injection was. A spinal surgeon said he wouldn't operate on it.

First off, I think you should deperately find a doctor who deals with PN. If you tell us where you are located, I'm sure one of us will have some names and numbers for you. Once you get a definitive diagnosis, you can proceed with diagnostics and treatments.

I,too have small children so i understand how devastating it is to your family life. The children know when something just isn't right with Mommy.

It may take some leg work to find the right physician, but it will be worth it. Try not to waste your time on MD"s who don't have a clue what they are talking about.

my best,
cari

JAG,

Welcome to the group. I am so sorry you are dealing with this pain. As another mom with a young child age 2, I can relate to your difficulties.

I agree with Cari. Try to find a PN specialist, even if you have to fly to get to them. I wasted a lot of time with inadequate physicians and conservative treatments and I have only continued to get worse. Some of the doctors have long wait periods so I would go ahead and call now and get an appointment - you can always cancel later if you change your mind or your condition improves. You also might want to think about getting an MRI with Dr. Potter in NYC (contact info under the doctors section). She can often see scar tissue and if the nerve is entrapped. It's not 100% diagnostic for PNE, but her findings have correlated with some surgeries. I didn't do this, but felt like I needed to before surgery so I delayed my surgery and am having to wait for an MRI until May. So get an order now if you are interested.

So did the nerve pain all over your body go away after you stopped the Lyrica? That is a strange reaction, but medications can do all kinds of crazy things I have learned. Do you have a decent pain doctor that will "tweak" your medicines and help you get your pain under control?
Have you tried any other meds:

-antidepressants (amitriptyline/tricyclic antidepressants are often used for chronic pain)
-lidocaine gel for the superficial vulvar burning
-narcotics
-muscle relaxers
-benzodiazepines (valium, ativan-this helps me some to sleep if I can't due to pain)
-neurontin

Ice and rest and not doing anything to aggrevate my pain is my best pain reliever honestly. My pain has become more widespread however and that really has debilitated me unfortuantely.

Hang in there. Chronic pain is a hard battle, especially pelvic pain that is not well understood. Keep searching for answers and fighting. PN is difficult to treat, but not impossible, some people are even cured after many years of treatments.