Health Organization for Pudendal Education

Hi everybody.

To be short, I believe I have been suffering from some kind of Pudendal Neuralgia/Nerve Entrapment since (at least) Feb 2010. I have seen a number of specialists, tried various treatment modalities, and had many medical tests performed over the last 1.5years. Frankly, I am extremely frustrated with my pain; I am depressed and I'm tired of living like this - I do not feel that I can cope with the pain (physiological and psychological) for much longer. I have been waiting a few months now to be seen by Dr. Gordon and Dr. Peng at Mount Sinai Hospital in Toronto; nobody at the hospital is able to give me an indication of when I'll be brought in for my first appointment. Judging by other people's experiences, I may not get into the hospital for another few months and it will likely take even longer for any medical tests (e.g. nerve blocks) to be done.

Copied from another thread, here are my symptoms:
-Allodynia (extreme burning, stinging, itching) throughout my body, but definitely most bothersome around genitals/thighs/inner legs
-Extreme rectal pain all the pain, but absolutely aggravated by sitting for any extended period of time (use of 5% Lidocaine is the only 'treatment' that provides (temporary) relief) and always painful after bowel movements.
-Sensitivity to heat: I absolutely hate the heat. My Allodynia is made much worse by elevated body temperatures.
-For a couple of years now I've had trouble emptying my bladder completely: essentially, everytime I use the washroom I feel the need to empty out a little more urine 2-3 mins after previously voiding (additional urine does indeed manifest itself)
-No medical explanation attained yet for my pain (medical tests so far have ruled out MS, Fibromyalgia, and other neurological conditions, STIs, Hepatitis, skin disorders/rashes, etc.)
-For the last few years I've worked in a factory where I sit on a forklift for 6 hrs a day, 5 days a week (and when not at work I sit for many hours at my computer)
-I worked out at the gym doing heavy weight-lifting for about 2 yrs before the Allodynia gripped my body (I would often feel 'pressure' on my tailbone when doing Leg Press)

Is it the case that I would be able to receive a faster diagnosis and, eventually, faster treatment if I traveled to the U.S.? Will you guys please give me any advice that you can re: traveling to the States for diagnosis and treatment? I have not yet received a diagnosis of PNE, although my PT does believe I have some kind of pelvic nerve irritation. I've had brain, neck, and middle/upper spine MRIs done; I've been tested for STIs; I've had Lyme Disease and Hepatitis ruled out; and there was no positive response to the 'trigger points' test for Fibromyalgia. My family doctor, a Neurologist, hospital room ER doctors, and various Dermatologists have not been able to find anything wrong with me. I have not had any MRIs or X-rays of my lower spine or pelvic region. It's possible that I could have my Neurologist order MRIs and/or other tests if necessary - and the wait-time to get the tests done would probably be about 2 months from now.

I'm willing to travel to the U.S. if it means that I'll finally get seen by a pelvic specialist. Which team of doctors should I try to see and why? Any help would be extremely appreciated, especially since I feel like I'm 'at the end of my rope'. Thank you.

Kinec,
I would get a 3T MRI from Dr. Hollis Potter at the Hospital for Special Surgery in NYC to help you diagnose your problem. I believe cost is around $3,000 US. She has special software and expertise that allows her to visualize pudendal nerve problems.

Don

Don's suggestion of an MRI with Dr. Potter is a great one if you can afford it. As far as US dr.'s there are several in the states and depending on who you would like to see the wait times can be very long. Dr. Hibner takes about 9 months before getting an appointment with him, Dr. Dellon (doesn't take insurance) usually is about 2 months. I don't know about the other dr.'s so you would have to contact them if you want to try to be seen sooner.

Kinec, were you able to find a physical therapist or do you have to wait a long time to see them too? If you can get in quickly with a PT in Canada, you might want to get a tentative diagnosis from a PT in addition to traveling to the US. My initial diagnosis was made by my PT when the docs didn't have any idea what was wrong.

Your clinical history and symptoms fit the PN picture so you probably already have a pretty good idea of what your diagnosis might be. The 3T MRI from Hollis Potter might tell you where an entrapment is and there are no risks involved with getting worse from an MRI like there are with nerve blocks. But she does not treat for PNE so you may want to go ahead and make an appointment with a surgeon if you think there is any possibility you will have to go that route -- you can always cancel if you do it in a timely manner. I can't say which surgeon/team is the best -- it's good to read patient experiences in the case update section of the forum.

Wishing you the best,

Violet

Hi Kinec,

I am also Canadian and know what fe doctors/dig Isis there is. I met with dr. Gordon about 5 years ago . Very knowledgable. After a physical exam and history taking he stated that I likely have pne and recommended that his anestiologist perform a ct pudendal nerve block to confirm. The anertiologist examined me a d said I had nerve damage but did not thin I had pne and stated no block was needed. Dr. Gordon just suggested pain management. I was upset when I left because I wanted the block for confirmation .

About a year later I found a doctor at Henry Ford Hospitl in Detroit and he conducted a pudendal nerve block using a fluroscope. He concluded that I had pne. He suggested carols pain management options. I asked him about the pne surgery being done in Dallas, He indicated that he has sent a few patients their, and they are worse. He told me to learn to live with ir, it is what it is. I was very upset that there were no treatment/surgical options.

I have been dealing with this for 11years and no farther ahead. I to am frustrated and have found this site helpful. Many are taking about Dr. Potter in NK and her MRN that shows were the entrapment is and less invasive surgery than Dallas. I may consider meeting with Dr Potter.

I think the US has more experience than Canada. Dr Gordon was very professional, but I wanted to slap his anthesiologist.

Hope this helps. If you have any other questions feel free to ask.

Gail

Gail, there are some patients who get worse from PNE surgery but if you believe the publications and the anecdotal evidence from patients on the PNE forums, the majority see at least some improvement. Also, the initial recovery phase can be difficult and that may be the time period during which that pain doctor saw the post-op Houston patients. I went to a pain doctor for a few months after PNE surgery and he didn't think I should have had surgery but now I am back to work, I actually have a life, and I am so glad I had surgery. That said, I think everyone who goes into surgery should go into it with their eyes wide open, knowing they could get permanently worse. I think it is wise to try conservative therapies first and to see surgery as a last resort if you still have no quality of life.

Wishing you luck with your decision.

Violet

Hi Violet,

Thanks for your advice and sharing your own experience with pne sugary. I am very glad it worked out for you in the long run.

Believe me surgery will be my last resort and I will research fully before deciding. In 2002 I was told I had coccydynia. i was told that i needed my coccyx removed. I saw two surgeons and was told the surgery would be a 50-70% success rate. Not only did the surgery not help it made me worse. I spent 2 years in bed and can not sit at all. I had pne all along but was diagnosed incorrectly. Due to this terrible experience I am very cautious about trying another surgery.

I do like the idea of an MRN to see where the entrapment is . What do you think of the MRN. I am still doing research on this test.

Where was your surgery done and by whom?
Gail

Gail, my surgery was done by Bautrant in France almost 7 years ago.

What do I think of the MRN? Some people have gotten valuable info from it but it is not proven to be 100% accurate. If I had a choice, I would probably opt for the 3T MRI from Dr. Potter but that is only due to anecdotal evidence from patients who have posted on this forum.

Hi Violet,

Thanks for the info. It 's great to hear that you got your life back after a pne diagnosis. You give me hope.

Gail

Gail,

I say you definitely need to get MRI's of lumbar and pelvis done first. Make an appt with Dr. Potter for MRI (sounds like people are being scheduled into Dec at this point). These will be more pieces to fit in your "puzzle".

cari