Health Organization for Pudendal Education

Vi,

You are absolutely correct. He did shockwave on himself and completely recovered. Yet, if he can do shockwave on the perineum, why don't others? Is it a problem that providers have not tried this protocol, or is it a problem with the FDA, or the manufacturer of the shockwave device not applying for this application? I will find out. And as I find out, I will report my results here.

Again, shockwave is not for everyone and I do not imply it is. It has worked for me, and for that I am grateful. Everyone is different I believe in how the pudendal nerve is entrapped, injured, etc. Since this is so, therapy must be tailored to the individual appropriate to the condition.

Progress Update: Today I sat for 2 continuous hours on a McDonald's restaurant hard bench seat with no pain. For me, that is real progress. Before Shockwave treatments, I could not do this for even 5 minutes. I am grateful. I know what misery this condition brings and I am grateful for anything that diminished the pain and disability in one's life.

kone

Konedog4,

This is my first post in the forum and i will try to be as brief as i can...
I am a mixed martial arts fighter from Bulgaria and have been training my whole life. My first symptom was extreme pain in the perineum after wrestling session back in April 2011. For the next two months I've had a little tingling sensations around the coccyx while training, but didn't pay too much attention to it as I thought it's nothing serious. After a pause of 2 weeks of training, I've developed extreme pain while I tried to sit on my bike (the seat was incredibly uncomfortable as most sport seats are). Then i realised something was wrong. I developed pain in the lower abdomen and the list goes on... I've had almost all of the classical PN symptoms. Had two surgeries on the lower abdomen (which mode things much worse) and one on the lower back. Then I started rehabilitation. At one point I was in a lot of pain 24/7, but with a little life changes I'm almost "normal" again unless I start training again. I can sit on most sufaces without problem (not on my bike though, still hurts like hell) for unlimited amount of time. All in all everything is pretty much back to normal if I don't start training again. But I want to start training again, riding my bike and just have the active life I once had and the life I'm used to. I have gained a lot of weight through these years and i feel depressed, developed panic disorder(which is pretty much under control now), still have minor PN symptoms plus erectile dysfunction. I'm nowhere near the pain i was in and the most people in these forums are, everything is "almost normal". The problem is that I want my old life back, be proffesional again and fully recover.
So much for my symptoms and story because I can write a lot, but it wont matter and i want to get to business.
Can you give me a way to contact Dr. Andrews, e-mail or some coordinates?
How much sessions you had to have, and what is the price for each session? (as you can imagine if I go to see him for treatment I'll have too fly all my way from Bulgaria, but still)
Does he need some tests conducted before you see him?
All in all I can go to Prof. Tibet Erdogru in Turkey, as Turkey is a neighbor country, but somehow I don't believe much in the surgical treatment of PN.
Thats all for now . Take care.

One more thing. You say it is very important to recall the event that started your symptoms.Well I'm almost 100% sure it is because of riding a bicycle on a very uncomfortable seat, because i was doing 60+ kilometers every day, even though my first symptom was after a wrestling session. I believe the bicycle did it's damage and after my wrestling session the PN just somehow had "unlocked" itself. Maybe both contributed, who knows..

Topkitena,

Welcome to the forum. It sounds like you have figured out that biking caused your PN pain to begin and to worsen. Without the biking and other training you have returned to almost normal, meaning without pain, I assume. I understand how difficult it is to lose these important parts of your life. However, do you want to resume these activities at the risk of finding yourself back in 24/7 pain that does not respond to treatment or rest? I know how it feels to lose the things you love to this condition and I sympathize with you. Good luck if you pursue treatment in Canada with Dr. Andrew.

Sincerely,
Stephanies

Stephanies,

I have a theory that if I slowly improve my fitness level up maybe i will fully recover. That theory is shared with my PT. I still have slight PN symptoms, but I am in no pain. I occasionally may get a flare up, but it subsides after a day or two.
I developed a plan for my recovery, which I will start working on soon, being aware that things may get ugly, but I'm willing to take the risk as the condition has taken the life I loved and turned me into obese sloth . Whatever happens, I want to know that I've gived myself a fighting chance and pursue my dreams not wanting to settle for second place (if you know what I mean) . I may not pursue any treatment at all and try to improve and recover on my own. Only time will tell.

Best of wishes!

Topkitena,
I agree with Stephanies about the risk. This pain can be life-changing and I will probably never risk biking again.

If you are adamant about returning to biking you could check into other bike seats designed to prevent pressure on the nerve. HOPE lists some of them http://www.pudendalhope.info/node/34.
At my first physical therapist they actually had a system to optimize fit of the bike to your body and the appropriate seat was part of that.

solarmom

Hi Topkitena,
Welcome to the forum! You will find many helpful,informative and supportive folks here.
I sympathize with you in that you want to be your old self again, and do all the activities you did before.
It's difficult for folks without chronic pain to understand how hard this is, pain-wise of course, but also in the loss of daily activities, the socialization,and boredom, etc.
Even my spouse does not "get" the severe levels of pain involved, and does not want to talk about i.
I of course just want to be "myself again" for my family's sake and be on my own and active.

Over the past several months I've been encouraged by new medical practitioners I really trust, to be as active as possible , and do things like drive locally, go out to dinner etc
They have seen some improvement in the spastisity and condition of my pelvic floor, which is encouraging.
I really enjoy the independence, and feel MUCH better while out on my own, tho sometimes I overdue it by staying out too long, or whatever, and then pay for it with severe after pain! The morale boost,which is much needed tho!

However, like Stephanie and others said, I would also caution you to be gradual and careful with your activities. It sounds like you have made great progress, and I would not want to risk loosing it.

Unlike many folks on this site, I'm not a bike-rider ,weight-lifter or athlete. I had no major surgery prior to my pain issue , other than a quick fall on my backside, possibly the same year my pain started --- but can't recall exactly when.
I had no pain at the time, or afterwards, just a minor spill.

But many years ago - at age 17, I noticed my bladder didn't feel truly empty after peeing. So I developed a bad habit of staying in the bathroom and trying to get more urine out until I felt adequate relief.
This went on for approx 30 years! I still do so at times.
So this dysfunctional voiding is my guess as to how my syndrome began.
In 2006 my bladder "urge" became constant and a few years later, after loads of online research on pelvic floor issues, and several fairly useless doctor visits, I was scared to death! Anxiety was through the roof!
So over time sit bone pain came on and later anal/rectal pain... due to an unnecessary surgery a caring,well-meaning doctor sent me for.
A few months late, I couldn't sit ...at all!
I also lost my beloved dad a year before my first bladder symptoms began , so for me I think there's a huge emotional and anxiety component in my pain.
I've started to really investigate the mind-body aspect of my pain condition due to the kind advice of our member Ezer and others.
I believe that it's really needed in my case.

Tho I certainly understand your desire to resume activities , I would also caution you to take it slowly, and take a break if you note your symptoms starting up. We are all different-symptom -wise and root cause, (my providers believe my pain is due to severe anal spasms rather than true PN.)
I agree, based on my history and personality.
You are the only one who knows how much your body can handle.
You mentioned, there were changes you made in your lifestyle that helped to heal you? IF you wouldn't mind sharing them that be great!
As you can see I have tried many things, but still need to see much more improvement before I can sit without suffering the consequences.
Welcome again and best of luck in your continued recovery from your pain!
Kathy

kathyd wrote:Hi Topkitena,
Welcome to the forum! You will find many helpful,informative and supportive folks here.
I sympathize with you in that you want to be your old self again, and do all the activities you did before.
It's difficult for folks without chronic pain to understand how hard this is, pain-wise of course, but also in the loss of daily activities, the socialization,and boredom, etc.
Even my spouse does not "get" the severe levels of pain involved, and does not want to talk about i.
I of course just want to be "myself again" for my family's sake and be on my own and active.

Over the past several months I've been encouraged by new medical practitioners I really trust, to be as active as possible , and do things like drive locally, go out to dinner etc
They have seen some improvement in the spastisity and condition of my pelvic floor, which is encouraging.
I really enjoy the independence, and feel MUCH better while out on my own, tho sometimes I overdue it by staying out too long, or whatever, and then pay for it with severe after pain! The morale boost,which is much needed tho!

However, like Stephanie and others said, I would also caution you to be gradual and careful with your activities. It sounds like you have made great progress, and I would not want to risk loosing it.

Unlike many folks on this site, I'm not a bike-rider ,weight-lifter or athlete. I had no major surgery prior to my pain issue , other than a quick fall on my backside, possibly the same year my pain started --- but can't recall exactly when.
I had no pain at the time, or afterwards, just a minor spill.

But many years ago - at age 17, I noticed my bladder didn't feel truly empty after peeing. So I developed a bad habit of staying in the bathroom and trying to get more urine out until I felt adequate relief.
This went on for approx 30 years! I still do so at times.
So this dysfunctional voiding is my guess as to how my syndrome began.
In 2006 my bladder "urge" became constant and a few years later, after loads of online research on pelvic floor issues, and several fairly useless doctor visits, I was scared to death! Anxiety was through the roof!
So over time sit bone pain came on and later anal/rectal pain... due to an unnecessary surgery a caring,well-meaning doctor sent me for.
A few months late, I couldn't sit ...at all!
I also lost my beloved dad a year before my first bladder symptoms began , so for me I think there's a huge emotional and anxiety component in my pain.
I've started to really investigate the mind-body aspect of my pain condition due to the kind advice of our member Ezer and others.
I believe that it's really needed in my case.

Tho I certainly understand your desire to resume activities , I would also caution you to take it slowly, and take a break if you note your symptoms starting up. We are all different-symptom -wise and root cause, (my providers believe my pain is due to severe anal spasms rather than true PN.)
I agree, based on my history and personality.
You are the only one who knows how much your body can handle.
You mentioned, there were changes you made in your lifestyle that helped to heal you? IF you wouldn't mind sharing them that be great!
As you can see I have tried many things, but still need to see much more improvement before I can sit without suffering the consequences.
Welcome again and best of luck in your continued recovery from your pain!
Kathy

Kathy, as far as lifestyle changes, i stopped biking and overall training (which was really intense, especially at the time of my first symptoms), changed my computer chair with a softer one, and basically became more lazy . As I said, I rarely have trouble sitting and can do it for unlimited amount of time.

While my symptoms diminished over the past 2-3 years, I became very depressed because my life changed from that of a very active person to that of a very stagnant one and I've put an extra 20 killograms.
I think that my case is pretty mild in terms of PN and I believe I can fully recover, even on my own without seeking rehab, doing my set of exercises.
I am still very outgoing and meeting quite a lot of people and travel to many places, but in the past 2 years the feeling has been growing on me to want to take my life back, even if I will have to push trough a lot of pain. I'll resume training these days and will slowly try to improve my fitness level firstly by swimming and a very strict diet plus a lot of antiinflammatories, and hopefully fate will be on my side. I will slowly add new exercises to see if they aggravate my condition and so on, I really have strong faith i can overcome this condition and be an MMA fighter again.I guess only time will tell...

Wish you all the best!

Hi Topkitena,

Dr. Andrew's contact info can be found here: http://www.pudendalhope.info/node/90

As someone who developed PN symptoms from exercising I can relate somewhat, although I was not a professional athlete like you so I can only imagine how devastating it would be to have to quit the profession that you love.

Like you, my pain is mostly gone but when I start to do the wrong exercise routine the pain returns and I think the reason is that my ligaments are getting old and I will never be young again. Dr. Bautrant found that my ligaments were hardened and sclerosed. There is nothing that will change that and it is something I have to accept. We all start to age and our bodies wear out and no matter how much we would like to get our old body back we can't. I still exercise and stay in shape but like you I've had to find exercises that don't flare up the pain. To me it is not worth the risk of getting back to the nearly bedridden state I was in 11 years ago.

I don't know how old you are or what is the underlying cause of your pain. I think you are lucky you have been able to get back to a low level of pain. Please be kind to your body and realize that it has limitations. I am sure it's not too late to find a profession that you enjoy and an exercise routine that helps you stay in shape; a profession and an exercise routine that won't cause your pain to flare up.

Violet

Topkitena,

The biggest thing that Dr. Conway has told me is that if it hurts the PN stop immediately. You can not "push through" the PN pain as I did while I was in the military with sore muscles and joints.

Even with decompression surgery you CAN re-compress the PN again, I did again on my left after my first surgery with Dr. Conway in 2010. So I have basically recovered from PN twice, here are the things I found to help with exercise and protecting the PN:

I found that I can tolerate elliptical motion much better than walking, I use something like this:

http://www.schwinnfitness.com/schwinn_f ... ptical.jsp

I can easily run a mile 2-3 times a week on these, it is just enough to keep the additional weight off.

I find that while running hurts my PN, this reduces impact, but still let you keep some level of exercise to get the heart rate up.

At least here in the US you can usually get a 30 day demonstration at your PT office or get a 30 day trial at home.

I also made cushions out of upholstery foam to raise my hips out of the bolsters, the raised part of the sides seat that your hips in place, of the bucket seats in my car. You can also cut out a hole in the center if that helps. You should be able to find some high density upholstery foam at any place that sells fabric.

Sleep, if you cant rest well you cant exercise well, as I am sure you know. I need about 4" of memory foam to sleep comfortably and to distribute the weight off of the pelvis. I tried getting a brand new bed with a pillow top and my pain went up instead of down, so the two layers of 2" foam went back on the bed. I find that he solid foam works better than the type with different shapes.

I also found some specific nutritional information that may help, PM me if you are interested.

Good luck

Carl