Health Organization for Pudendal Education

I just tried the quarter size circle on the balls of my feet (I did not have mole skin, but used a pre-cut felt pad that usually you put on the bottom of a chair leg to keep it from scratching your wood floor! I was just messing around)... Wow, it really changes how I walk and this is Day 2 and I feel some relief. How can this be? I am stunned! What is the relation of our gait to this whole mess? I have had pain in one specific spot of my left groin for 20 years.. Over time my hip and pelvic (just on left side) have flared up off and on, and the last year has been more chronic. I can only sit half hour or so on bad days. It's been suggested the pain in the groin is a laberal tear, and wearing flip flops is my shoe of choice! Now I am walking around with a circle of felt on my slide on flip flops with wool socks trying to not sink in the snow! Whatever works at this point! Thank you so much for the interesting suggestion. Have others tried?

I am new to this whole PN/PNE thing. My problem was caused by having my bladder hydrodistended three times in a botched procedure in July of this year. (One other person had the same procedure done [only once] and also awoke to a level 9 pain.] Afterwards, I was in total agony with an 8 pain level. Even now with 800 mg of Lyrica, I can barely make it to the grocery store and can't even conceive of flying back and forth to AZ from where I live (DC), let alone vacationing. I am having trouble figuring out how to make a 1.5 hour car trip to the nearest pelvic pain specialist. I spend 90% of my time flat on my back. I read about people who are not cured and are gardening and doing other things I can't even conceive of. Am I in the minority here with my high level of pain?

Another thing. People seem to be flying around the country getting opinions from Conway (NH), Hibner (AZ), Potter (NYC), etc. Do insurance companies pay for all this or is it out of pocket? I know Potter charges $3K for her MRI's.

Bathsheba, a PN newbie

Bathsheba - Potter's MRIs were covered by my insurance. You would need to call her office and ask them if they accept your insurance. Mine is BC/BS. When I called they told me the MRIs were covered and I haven't received any invoices (so far, fingers crossed).

Bamboo

Bathsheba,

PN causes "flares", which you'll hear us talking about often. It's usually from overdoing it: Too much lifting, bending, reaching, etc. The flares can last for days or weeks. Have you tried opiates for your pain? Some nerve pain (mine including) did not respond to neuronin or opiates, so I spend my life "hyperavoiding" any of the above activities. This has made it more bearable. Many others have luck with opiates, it's just a trial and error thing.

have you been diagnosed with IC? Just wondering what your instillations were for. These 2 conditions seem to be connected, or improperly diagnosed.

You will make your way through this conundrum of tests, doctors, etc. and find a place that is tolerable. Please let us know what we can do to help.

cm

Dear Bathsheba,

I'm sorry, it sounds like you are really struggling right now. There are different levels of pain for people with PN - some live with severe pain constantly, other's have low levels of pain that are exacerbated primarily by sitting. I understand how difficult it is for you because I used to spend most of my time lying down in pain and there were no comfortable positions. I was not able to vacation either.

Flying around the country and over to France for treatment was extremely difficult but most times I was able to lie down on the airplane. Drugging up with opioids helped. I thought I would never be able to take a walk or garden again but even though I'm not cured, now I walk two miles a day with no PN pain, sit for hours at work, and work in the garden.

Anyway, the reason I'm telling you all of this is to give you hope. What you are going through right now is extremely difficult but with the right treatments you may recover to where you can live a decent life.

Is there someone who can drive you to your appointment so that you can lie down in the back of the car? I still lie down in the back for long trips.

Insurance companies will not pay for your travel expenses but they often cover the medical treatments. There is an application for assistance that can be accessed on the home page at http://www.pudendalhope.org (see the left menu) if you cannot afford your travel expenses. Funds are awarded based on eligibility, availability of funds, and order in which applications are received.

Violet M

Thanks for answering my question.

I just saw Dr. Richard Marvel, a pelvic pain specialist in MD. He has diagnosed me with pudendal neuralgia and set me up for up to 6 CT guided nerve blocks by Dr. Howard Richard at the U of Md. The first one is on 1/13. He added amitryptiline to the medicine mix and wants me to do PT to loosen up some tightness in the right side of my pelvis (same side PN damage is). The addition of the amitryptiline has helped.

Dr. Marvel is very optimistic that the injections plus modification in life style (special seat) will work. I was a little put off by his charge: $600 for an initial consult. He did a physical exam and that was it. I saw him for 20 minutes at the most. I have no insurance. I also had a lengthy email conversation with the other MD doctor, Dellon, who impressed me as very much into money. I realize both these guys are probably extremely competent at what they do but Dellon came off as a hustler to me and Marvel's $600 charge put me off.

However, I feel like I am finally talking to someone who knows what he's doing and that I am on the right track. I never would have gotten to Dr. Marvel if not for a friend who emailed me a link to the HOPE site. This lay person correctly diagnosed a problem that three board certified specialists (including a neurologist) missed. Thank God for the internet.

I've heard such great things about Dr. Marvel. Good luck on your journey. I wish you much success with your injections!

cm