Health Organization for Pudendal Education

Hi All,

First of all, I would like to thank you for creating this wonderful site very informative, humane, and caring.
I am a 38 y/o guy who is highly active ie. playing basketball and doing advance workouts almost everyday.
In four months time, my body transformed from a guy with flabs to six pack abs; unfortunately, there is no such thing as free lunch.
My workouts composed of all compound weight lifting exercises - squatts and leg presses included.
To make things worse regarding my history, most of the day, I spend 8-10 hours sitting in front of the computer.
I usually make it a point to stand up and walk around the office as often as I could since I am not really used to sitting for long periods.
Lately, due to higher workloads, I sat longer hours.
I noticed that last week, there is a bit of needles and pins sensation at the right side of my male organ.
I didn't pay attention to it and carried on with my usual work & gym activities.
Few days later, the tingling sensation was accompanied by a bit of numbness in between my anus and scrotum (perineal region).
In the past, I also used to have these numbness sensation over my perinuem when I sit for so long periods but it would go away once I stand up and walk for several minutes. Now, it looks like it has been there constantly
I have no urinary or bowel symptoms of whatsoever and I tried to search the net for some possible explanations and came across this website.
Although there is still no pain - only a bit of numbness, I am wondering where do i need to start.
I work abroad and on rosters so I don't really have immediate access to doctors whenever I wanted to. I have to wait for my roster to finish first. When I get home next week, I plan to see my urologist and hope that this is just some sort of chronic prostitis.
At any rate, can somebody still please share your thoughts on how will I move forward if ever my doctor doesn't see anything?
I am pretty much starting to get worried as early as now and I think that PN management in our country (somewhere in Asia) is not yet recognized.
Thank you in advance for your suggestions.
Hope I'll have a bit of enlightenment before everything's too late.

Regards,

DoKeds

Since it sounds like access to dr.'s and physical therapists that specialize in pelvic pain might be a challenge for you, you will need to try to do as much on your own as you try and figure this out. If the suggestions by your urologist don't work you might want to get the books "Heal Pelvic Pain" and "Headache In The Pelvis." Both have very good information on how to do self treatment such as exercises, self-massage and stress reduction. You also might want to try sitting on a cushion with a hole in the middle like a toilet seat to see if this reduces the numbness symtoms. Also, stop the exercises for a while to see if that helps. Hopefully, some others on the forum will have suggestions for you, too. Good luck and keep us posted.

@ Nyt,

Thank you very much for your input.
I am already greatful that in advance since I know that there will be people like you who can give me inputs and guide me along the way.
In the meantime, I still have 5 days to go before I'll be able to see my doctor.
For several days I have absented myself from the gym and I am starting to feel very unusual - I'll rather do some light exercises instead first as I need to keep my body in shape.
Will check out the books and try learn as much information as possible & apply 'em whenever I'm at work.
This is the first time I have heard of this syndrome and hope that I'll be able to share my story soon to people who might be in the same condition as I am in our country in the future.
Will keep you posted and keep up the good work.
Your suggestions will always be much appreciated.

God bless.

DokEds

DokEd,

Welcome to the forum. I hope your doctor will be aware of pudendal neuralgia and will be able to help your figure out what is going on. If not, you may want to go to pubmed central and do a search on pudendal neuralgia/neuropathy etc. and see what publications there are by Asian doctors. I remember seeing some in the past but not sure what countries they are from -- maybe Korea, China, and Japan. Then you could try contacting those doctors to see if they treat people with your symptoms.

Definitely cut back on the weightlifting -- especially anything that tenses the pelvic floor or causes repetitive hip flexion like lunges and squats. Some of the ab exercises could be a problem too. Hopefully at this point you just have some muscles in spasm that are impinging on nerves and by being careful and changing your lifestyle a bit you will recover without difficulty.

Best regards,

Violet M

Dear Violet,

I can now feel that minutes are turning into years while I'm waiting for my roster to end
Thank you for the optimistic words and hopefully this will just be some sort of muscle spasm or any entity other than PN.
My work schedule is so tight and I cannot afford to have long breaks as I always fly abroad.
People are now wondering why I am not visible at the gym lately - they see me there as a "machine" or "monster" who never gives up on training. And now, I am suddenly INVISIBLE!
Health is Wealth. I will follow all your advices and hope that I get the answers soon.
I will keep you posted and God bless all you people who support this site.

Regards,

DokEds

Dear All,

Hope this finds you well.
Haven’t been around for a while – in the hopes of finding answers while I’m away.

UPDATE:
When I went for my short break (10days) in the Philippines, I immediately consulted several doctors. Below are their findings:
1. Surgeon – no hemorrhoids, no fissures, no hernia. He told me that it might just be spasms in the pelvic floor muscles that might be causing the symptoms. I was advised to cut down on the workout.
2. Gastroenterologist – did colonoscopy and found that the entire bowel was normal. I was cleared.
3. Urologist – checked on my prostate and said all is OK. I asked him if there is any possibility of entertaining Pudendal Nerve Neuropathy. Looks like he is not that into it and just told me to relax and cut down on the work out.
4. Last but not the least, the Rehabilitation Medical Specialist – Lumbosacral MRI was done and only showed thinned Lumbar intervertebral disc spaces that are not yet bothersome. The Sacral Nerve roots are free. I also told her that I am thinking of Pudendal Nerve issues. She concurred but only advised me to stop working out, decrease sitting time (which is hard because my work requires it) and shift to swimming instead.

In summary, I ended point blank.

I am now back to work (remote site in Indochina region) and gearing towards another break in the next few days. I bought a U-shaped cushion that I use most of the time but I remove it at times because my legs are getting numb. Maybe it is not soft enough.

The numbness in the right side of the perineum is still there and now it is becoming more intolerable to sit since my gluteal muscles are now becoming less bulky – no more butt workout. I can now also feel some discomfort in my proximal inner thigh.

Haven’t been to the gym that much but I still manage to exercise 3-4x a week as opposed to 5-6x before. Most of the exercises involve the upper body – Pull Ups, Push ups, Curls etc. No more squats, lunges, and leg workouts. I can slowly feel the difference because the lower body is starting to shrink and the muscle mass therefore is not equally distributed anymore. It is really a punishment to see your body going downhill that easily after the long hard work.

Anyway, last week, a friend told me that there is ONE hospital in the Philippines that does the 3T MRI. Only one in the country. I am definitely going for it next break.

QUESTION:
Is there any special instructions that the doctor has to request to make sure that the course of the pudendal nerve is properly examined? I might have to inform the doctor if ever I will be first case they are going to have.

I have printed a lot of informative documents from this website and I will show it to whoever will see me next.

After having read all the stories in this forum – I have lots of hope that there will be light at the end of the tunnel. It has been a long journey for most of the members here and I strongly admire your courage and patience. I am now beginning to learn how to live one day at a time and appreciate more life as it uncovers everyday.

Thank you in advance for your answers.

Regards and wishing all wellness and comfort.

DokEds

Hi DoKeds,
This is the script from the home pages here for a 3 T scan
The script should be as follows.
MRI of the Pelvis
Bilateral Pudendal nerve
1) From ischial spine to Sacro Spinal ligament beneath Sacrotuberous ligament and to the Alcock's canal.
2) Dorsal Nerve of the clitoris or penis especially passing through the pubic bone.

I wondered, do you have the symptoms on both sides? and exactly the same?
There are such things as standing and adjustable desks and workstations, many employers have supplied these for PN sufferers. I often used to kneel, unconventional I know but. . . . . . .it's your butt!! There are also kneeling chairs and stools. These don't suit sometimes if there are any sacroiliac joint or hip problems, as they put an extra strain on that area. It's a trial and error thing.
I do hope that you are able to get some help for this asap. I really think that a good PT evaluation would be helpful, ans some PT treatment even more so, but undo-able at the moment?
Here is an article about pelvic physiotherapy reaching China http://www.pelvicpainrehab.com/blog/201 ... c-pain-pt/
There is also an India Forum with some information supplied by Sunil about doctors there, which may be helpful? http://www.pudendalhope.info/forum/view ... =99&t=3405
Did you ever find any physiotherapists Sunil?
Send Sunil a pm perhaps, he is a wealth of information and so helpful DoKeds
Take care,
Helen

DokEds, your radiologist in the Philippines would need to contact Dr. Potter to get the information on how to do the MRI.

We don't have the protocol that Dr. Potter uses on the website -- it would be far too technical and something that a physician/radiologist would need to contact Dr. Potter for. Shawn has given the information about it in this thread: http://www.pudendalhope.info/forum/view ... =69&t=2490

helenlegs 11 wrote:Hi DoKeds,
This is the script from the home pages here for a 3 T scan
The script should be as follows.
MRI of the Pelvis
Bilateral Pudendal nerve
1) From ischial spine to Sacro Spinal ligament beneath Sacrotuberous ligament and to the Alcock's canal.
2) Dorsal Nerve of the clitoris or penis especially passing through the pubic bone.

I wondered, do you have the symptoms on both sides? and exactly the same?
There are such things as standing and adjustable desks and workstations, many employers have supplied these for PN sufferers. I often used to kneel, unconventional I know but. . . . . . .it's your butt!! There are also kneeling chairs and stools. These don't suit sometimes if there are any sacroiliac joint or hip problems, as they put an extra strain on that area. It's a trial and error thing.
I do hope that you are able to get some help for this asap. I really think that a good PT evaluation would be helpful, ans some PT treatment even more so, but undo-able at the moment?
Here is an article about pelvic physiotherapy reaching China http://www.pelvicpainrehab.com/blog/201 ... c-pain-pt/
There is also an India Forum with some information supplied by Sunil about doctors there, which may be helpful? http://www.pudendalhope.info/forum/view ... =99&t=3405
Did you ever find any physiotherapists Sunil?
Send Sunil a pm perhaps, he is a wealth of information and so helpful DoKeds
Take care,
Helen

Hi Helen,

Shalom!
For now, the perineal numbness is only on the right side. Sometimes I can also feel that the inner part of the thigh is discomfortable. On the positive side, I still have the other half of my butt normal and I can shift the weight (but up to when).
As I work in an office and sitting is unavoidable, I make it to a point that if I do not have to deal with computers, I stand and walk.
People are starting to think that I am no worker but a lurker.

I have taken note of your MRI information. I'll also try to reach out to Sunil as well.
I have read some of his posts and I can feel his stong aura. I admire his bravery after all he'd been through.
At this stage, I hope that another MRI will fit me well in terms of the diagnosis and hopefully an effective PT is all that I will be needing.

Thank you very much for your response.
I hope you are well & painless while reading this letter.

God bless you always and take care.

Regards,

DokEds

Violet M wrote:DokEds, your radiologist in the Philippines would need to contact Dr. Potter to get the information on how to do the MRI.

We don't have the protocol that Dr. Potter uses on the website -- it would be far too technical and something that a physician/radiologist would need to contact Dr. Potter for. Shawn has given the information about it in this thread: http://www.pudendalhope.info/forum/view ... =69&t=2490

G'Day Violet,

Thank you for the information.
I'll definitely have to coordinate first with the next doctor that I'll check with and with the radiologist as well.

Your help is much appreciated.

God bless & hope you are well today.

Regards,

DokEds