Health Organization for Pudendal Education

Hello, every couple of months I search the web for help. I will say reading the histories of other people help me deal with my pain. Like others I first noticed this condition 12 years ago. It started with a terrible pain in my penis. My penis felt as though someone had hit it with a hammer, the pain was off the charts. I immediately went to the doctor and they ran tests and they couldn't find anything and then the pain went away for a long time. Then out of the blue it would hit me with a ton of bricks. Finally about three years ago it started again and has not left. It hurt so bad, I would drop my pants and ask my wife to check out my butt area, surely something that hurt this bad there had to be something visible, but nothing. Not knowing made the pain worse, I remember lying awake one night I believe it was christmass eve and the pain consummed by entire body, I was a wreck. I started to write down my level of pain every day. I wrote a journal and went to a urologist who couldn't find anything, he told me that I had to gut it out. I then showed him my journal and he told me that in his entire career he had not seen a journal, he told me I was crazy. I've since seen this doctor and my conversations with him have not been pleasant. Finally the pain got so bad that I begged my doctor to help me. He found Stanley Antolak. I called and he told me that he was booked for 6 months, I showed up at his office and found that he hahd a cancellation. Antolaks office did not instill confidence in me, plus he looks to be 100 years old. I visited him he gave me the four shots over a four month period guided by a CT. They helped for maybe five minutes. I never went back to him!

What I did get from the doctor was an explanation. I also got some tips that have helped. I had to retire due to the pain. This morning I'm sitting on a toliet seat that a place in my chair. I use garden pads that can accomodate chairs, I cut them up and I carry them every where with me. I went on a cruise this year because frankly I don't know what the future pain is going to be, better do it now!

My attitude is I'll go anywhere and I'll gut out the pain and when the pain gets too bad I'll lay down or I'll get distracted and forget about the pain for a while. I've thought about surgery but the side effects could be worse than the pain.

Does anybody have any idea how many people suffer from this illness?
I'v heard horror stories sitting in Antolaks office.
People give me looks whehn I bring my pads in, but I don't care.
I'll pray for everyone!

Hi Glen and welcome to HOPE!
Wow - that's quite a story!

glen wrote:What I did get from the doctor was an explanation. I also got some tips that have helped.

Is the Doctor you're referring to Dr. Antolak? I understand you've gotten the blocks but did he actually diagnose you with PN?

glen wrote:I'v heard horror stories sitting in Antolaks office.

Were these horror stories about patient pain or Dr. Antolak his self?

glen wrote: I've thought about surgery but the side effects could be worse than the pain.

Could you please be more specific about what side effects you're concerned about?
I'm sorry you're having such a hard time but please keep the faith that people with this condition CAN and DO get better.
Best regards,
Karyn

Hi, Glen. You are not crazy and you're not alone. I think everyone on this forum has been through the ringer with seeing doctors and having them not know what's wrong. Once you know about the pudendal nerve, all the symptoms seem to fall into place and make sense. If you weren't happy with the doc you saw, please look at the list of docs referenced at this website and try another. After all the docs you've seen, I know it's nearly impossible to think of seeing another. But please don't give up. Click on "Go to home page" at the top of the page. Then click on "List of Doctors" on the left side of that page.

Also, you talked about different stuff you've been sitting on to help relive the pain. Here is a cushion that I've found super helpful. The price is very reasonable. I couldn't live without it. I modify the cushion by taking off the cover because the tension of the cloth across the space causes pressure when I sit. You can either put the cushion into a pillowcase or make a cover yourself. I don't sew, so I used some stuff called Sewing Machine in a Bottle. It's like fabric glue. Here's the website: http://www.icnsales.com/chair-cushions/

Hope that helps,

Emily B.

glen wrote:I've thought about surgery but the side effects could be worse than the pain.

Lots of people are helped by surgery, or else no doctor would do it. Food for thought.

Welcome.
I'm curious like Kayrn about the things you shared in your letter.
I have no idea how many people suffer from PN and PNE because it seems to be misdiagnosed most of the time. I've found different numbers everytime I read about it.
I bet the Mods may have a better idea about that. They are full of helpful information.

Good luck looking for answers. There is help out there. It's just a long, twisted road for many of us.

Good luck

Kathy

Glen, I'm not sure how many people have this disease. It seems many docs have never heard of it before so apparently it's not real common but it's often mis-diagnosed or under-diagnosed. Pelvic pain is one of the most common reasons women visit their gyn and chronic prostatitis is certainly well-known to most urologists. I think often they just haven't put 2 and 2 together and come up with the PN diagnosis. The Houston team reported that about 2/3 of their PN patients are women.

Here is an interesting article abstract:

http://www.springerlink.com/content/dwlcv3fh32cyertn/

The prevalence of chronic prostatitis-like symptoms in young men: a community-based survey

J.-H. Ku, M.-E. Kim, N.-K. Lee and Y.-H. Park

Abstract
We surveyed the prevalence of chronic prostatitis-like symptoms in young men using the National Institutes of Health (NIH) Chronic Prostatitis Symptom Index (CPSI) and determined the clinical validity of the NIH-CPSI among men in the community. Of 29,017 men aged 20 years dwelling in the community, 8,705 men were randomly selected at a 30.0% sampling fraction and a total of 6,940 men (a response rate 79.7%) completed a self-administered questionnaire. Six percent reported having pain or discomfort in more than one area . About 5% did not feel that the bladder emptied fully after urinating more than 1 time in 5 and 10.5% had to urinate again within 2 h more than 1 time in 5. As the scores for pain or discomfort increased, those for urinary symptoms and impact on quality of life increased (P < 0.001; Armitage test). As the scores for urinary symptoms increased, those for pain or discomfort and impact on quality of life also increased (P < 0.001; Armitage test). The community-based prevalence of chronic prostatitis-like symptoms were found to be high in young men as well as in older men. Our findings indicate that men with pain or urinary symptoms experience a negative impact on their quality of life and the NIH-CPSI provides a valid measure for the general population.

Thank you to all the people who responded, I'll try to answer your questions.
Yea I visited Dr. Stanley Antolak, he said he would forward information to my regular doctor, but he never did. He pricke me with a pin and used a hot instrument around my inner thighs and genital area and I couldn't feel anything, so I have PN.

What did I get from Antolak nothing more than a diagnosis and a prexscription for amytripilyne. I asked about surgery, Antolak told me that it was not without risks. I'm not medically orientated person so when I review surgery information it doesn't make any sense to me. I'd like to find someone who could talk plain english to me so I can understand, I'll even pay the person.

Every time that I go to the doctor I ask if they have ever seen a person with my conditions and they all say no. I'm scheduled for a colonoscopy and I'm already treading it. The last time I got prostate exam I couldn't sit doen for 6 weeks

While at his office upon by first visit and when I was getting the CT quided injections I talked to a number of people mostly women and their stories were remarkable surgeries after surgeries. I heard of a man that took his own life. I was lucky because I live in Minneapolis and Antolak is in Woodbury.

This site is depressing so I might not answer for a while I'll just sit back and read. Thank You'all

glen,
people usually consider the surgery when they are out of conservative options and / or have definite imaging evidence that there is an entrapment that can only be corrected by surgery, such as a nerve entrapped in scar tissue. The most conservative option to try prior, is pelvic floor PT. have you looked into this? There is a "find a PT" section on this site.

Glen,

We fully understand the frustration and depression regarding this horrible pain. I'm glad you found this website, and I hope you'll continue to log in. I think I can vouch for all of us here that these forums have been an absolute Godsend to us. Without the support of everyone here I don't know where my life would have taken me. It scares me to think about that. If it wasn't for our pudendal friends we would still be very much in the dark about this trapped or compressed Pudendal nerve.
Our organization and website is crucial to raising awareness and education of Pudendal neuralgia. Have you printed off this letter? Take it to your doctors.

I had no-one in Australia to help me but since finding this website my specialist traveled to France with me for treatment. it was a very long and painful journey to the other side of the world. Most doctors are still learning about PN and most doctors have never heard of it. with our help we will do our utmost to educate them.

Catherine

Hi Glenn;
Welcome. Just a thought. Find another Dr. for an opinion. I'm seeing Dr. Hibner in April. I will have waited 7 months for the appt. but I just feel I need to get as much info as I can before taking on surgery. I go to Dr. Conway in NH. I live in Northern Vt. and he's 4 hours away. Arizona is not going to be a cheap second opinion, but with PN I feel I need to do it. I always heard Dr. Antolak was suppose to be a good PN Dr. From your post, I now have my doubts. If you decide to go to Dr. Hibner in AZ get an appt. today. You will wait forever, but you can always cancel.
My best to you. Staying positive is a major job in itself. but it can be done. I try to keep myself positive by gabbing on the phone with old friends, or having people visit me. Now that's not easy when you're fighting the pain, but I find it does help a little.
My best to you;
Doreen