Health Organization for Pudendal Education

Posted: **Wed Apr 18, 2012 12:23 pm**

That's such good news about your health insurance, at least that is one round won in the battle

. 'Unusual' conditions can often be difficult to treat just because of 'coverage' restrictions, often encountered by many.
Well now you know what doesn't help at least. You sound like you need work on your P muscle, but not something so extreme (not that this exercise would be thought of as extreme to most) Does your piriformis always hurt with contact/pressure too?
Have you tried any easy stretches? http://www.sportsinjuryclinic.net/rehab ... is-stretch . Click the arrow and take a look at the video on this site.
Only do the first one here especially in the beginning, and monitor any effect. It's obviously better to do any piriformis stretches lying down, many advise a sitting position but that's not so good for us. You will know when to stop and how far to go. Try the stretch for 5 seconds, not going too far over at first, release it then try again for another 5 seconds. After a few reps the muscle can usually stand a little more stretch over. Do no more than say 6 and DON'T PUSH IT!. If you find this helps or at least doesn't flare anything at all, try it a few times a day. Always little by little.
I had an MRN (neurography imaging) which is supposed to show the nerves, mine wasn't very good (1T and nothing like reported by Dr Potter) However, the only thing I would say firstly, she hasn't been noted for a piriformis evaluation in the past. I don't particularly think that this will make a difference. I'm sure she has mentioned piriformis muscles on at least one report that has been listed on this site. Maybe phone and ask the question before you have the scan?Also have PS and PN mentioned in reasons why you need the scan .
The thing with identifying piriformis syndrome on a scan is that the muscles are usually noted to be quite different sizes, thus conferring a piriformis problem. . but what happens, as seems to be the case with you, if BOTH of the muscles are spasmed. No great difference in size may be visible and a PS problem isn't reported.
A scan is great when it indicates a problem but it can never be used as an ultimate answer.
Hope fully the signal intensity of any trapped nerves can be seen though and Dr Potter does seem to be one of the best at this.
It is sometimes the case that the sciatic nerve runs through the muscle in some people (me

) although I don't think you have complained of sciatica or leg pain?? This pathology does leave some more susceptible to PS and sciatic involvement, however.
I haven't ever heard of the pudendal nerve running through the muscle but, it does run underneath, so whoever said PN could not be as a result of PS needs to go back to anatomy classes perhaps. This often happens the other way around and any preceding PN can cause PS.Once the PN is dealt with (lifestyle changes, medication,physio, blocks, op, whatever works ) the PS calms too. You may be the other way around but it is the chicken and egg scenario for most.
You did have another post which seems to be lost?? but, just a point I made on there, which may help you if/when you do go back to work. . . . . Try adjusting your leg and seating position when driving from time to time. Fractionally is all it takes, say move your knee forwards slightly and drive like that for a while, then slightly to the side. This does help me but then, I don't have to drive so far of course.
take care,
Helen

Posted: **Wed Apr 18, 2012 2:00 pm**

Sorry about your flare, Redz. Unfortunately, they're very unpredictable and some times even the most insignificant actions can set them off.
I've tried all sorts of piriformis exercises and stretches throughout the years, with no improvement. I'm sure they're out there - but I've no personal knowledge of any one stretching PS away.

Redz wrote:Karyn do you think Dr Potter will be able to help me?

Well, Dr. Potter is a radiologist. I think she'll be able to provide you with better images than most others. Who is writing your script? What are they asking her to look for?

Posted: **Wed Apr 18, 2012 7:25 pm**

Redz wrote:Hello to All,
I'm happy to have found This forum since it has allowed me to understand and convey to my doctors what has been happening to me in the last 4 months.

1 History.
I'm a 43 yr old male active 6'-193 lb and went to the gym every other day.I have been working for UPS for 24 yrs.10 of which as a tractor trailor driver. In October of 2011 a took a new position with UPS driving 5100 miles a week. Myself and a coworker would leave each week for four days.Driving consisted of 10 hour shifts then 10 hour off in the sleeper bunk. Total drive time in the seat was 44 hours. Total time on the road 89.7 hours either is sleeping or lying down in the sleeper bunk. We would stop every 3 to 4 hour to stretch and use the bathroom.

2. In January 2012 I started to get pain while urinating and iratation at the tip of penis. Went to my family Doc and was Put on antibiotics for urinary track infection. Test found no bacteria and no Prostatitis no STD.

3. Febuary 2012 Was refered to urologist and under went a Cystoscopy. Test where negative for any urological problems.
Although in a small statement made by the DR just as I came out of the anistisia to my wife was I may have some pudendal pain.or pelvic floor spasms. Since I was just coming out othe anistisia I did not pick his comment up. Thank god my wife did. the urologist said there was nothing more he could do for me and referred me back to my family Doc.

4. March I went back to my family doc and She put me on pregisone for 30 days at 40 mgs to see if it would alleviate thepain.It did to an extent.

I continued to work and The pain started to manifest as a sharp stabbing pain in my urethra and presure like feeling in my Perineum that made my uretha pain worse. I can only describe the pain as a worm being pushed thru my penis. I was driving ten hours and going insane. I started to buy seat cushions. I have about ten now and none really seem to work. I also started to change my position while i was driving . I was sitting more on the back of my butt then in a more upright position. By the time the pregisone started to wear off the pain spiked. I now had pain in which I now know as the piriformis muscles. Both side and in my penis.
As of 4/15 /12 I have lost almost 18 pound due to pain and not sitting down. No gym anymore. I do housework and yardwork with little pain. I do however have the burning in both butt checks while standing But I can deal with that pain. It is when I sit that penis pain and Piriformis pain really kick in.

I am now out of work on disability and have been for the last 4 weeks.

I have had the following tests done.
MRI of the pelvis+ bilateral pudendal nerve. From ischial spine to sacrospial ligament beneath sacrospial ligament and the Alcocks canal. Came back negative
MRI of the lower lumbar .came back negative.)

I have been refered to a doctor at rothem institute in NJ,he reviewed the MRI and said you would not be able see if ithe pudendal nerve was intraped. He believes it Piriformis syndrome and has given me PT. it seem to help but as soon as I sit down the pain creeps back within minutes
I was also referd to pain management and was scheduled for a ganglion impairment injection on april 14.
In the meantime I had a appointment with another urologist to get a second opion.The doctor came highly regarded and is at Jefferson hospital in Philadelphia. I was really surprised he has had some paitiant that have the same symptoms. He thinks it is the Piriformis and pelicic floor muscles as well but told me NOT to get the ganglion inj that it would not help. I canceled the ganglion injection. He told me to continue PT and pelvic floor exercises.

I have been getting trigger point massage with some success. Both myself and the therapist can feel the Piriformis in spasm.
But at times it only seems to aggravate it.

I have noticed the lack of some sensation in my genital BUt not numbness.
I have no issues with bowel moments or urinating.
No issues with sexual function or ejaculation .

I have another appointment tommarow with pain management to see if he can give me Botox in the Piriformis muscles both sides.

If anyone can please answer these question for me I would be much appreciative

1. Can Piriformis syndrome cause pudendal neurophathy or mimick pn pain i.e, loss of sensation in the genitals And pain in the urithra. Can the Piriformis muscle spasm or inflame and impinge the pudendal nerve,

2.can u have pudendal neuropathy and not have a pudendal nerve intrapment.

3 If I return to work with limited driving, half hour driving and stoping for at least 20 mins. Will my symptoms get worse.

4. Is there any doctors in NJ, Pa, Ny who specialize in Piriformis and pudendal neuropathy.

5.has anyone been cured of either Piriformis syndrome or pudendel neuropathy without surgery

6.if I get the Botox in the Piriformis muscle And have no more penis pain will that rule out PNE.

Thank you.
Last edited by Redz on Mon Apr 16, 2012 1:38 am, edited 1 time in total.

Posted: **Wed Apr 18, 2012 7:43 pm**

Hi Karyn and halenlegs,
Again that you so much for getting back to me. Here is the MRI I had done.
MRI of the pelvis+ bilateral pudendal nerve. From ischial spine to sacrospial ligament beneath sacrospial ligament and the Alcocks canal. Came back negative

I got this off the TIPNA web site I showed it to my doc and she said OK and gave me the script. I believe it is what dr marvel wanted done before u see him. It look as though it is the same as what was posted. Please refer underneath.

Ladies and Gentleman,
It is now possible to have Imaging of the Pudendal Nerve by means of 3 Tesla imaging by Dr. Hollis Potter at Hospital of Special Surgery in New York City.A number of PNE paitiant have flocked to her in the last two months or so and have had really positive feedback.

The address is as follows.
Hospital for Special Surgery
Magnetic Resonance Imaging
535 East 70th street,New York NY 10021
Basement level

Apointment Desk
Tel 212-774-7296
Fax 212-774-7295

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.

To be reviewed by Dr. Hollis Potter.

Please have it faxed to 212-774-7295 by your doctor.
and then call MRI department at 212-774-7296 to schedule an appointment.

Take care,
Ali

I'm a little bewildered,If almost no doctors know PN how do they know what script to write? And I know you need a script for an MRI. But shouldnt Dr potter know what to look for. Could either of you add to the script in what to look for in the Piriformis as well.
I'm lucky I found that script,on TIPNA. I will have my doc write another one.

On another note that you for the steching exercises. I was feeling so great yesterday until I came upstairs to take a shower I look at the new Dom roller I got and jump on it and ...POW pain. I have not gotten out of bed since last night it is now 2:54 pm est. Totally not like me. I'm a type A person.. Workaholic. I'm use to 120 work weeks never in bed. Its kind of funny in a bad way. My wife and I own a business as well as me working. I had the opertunity to make and another $40,000 a year. We all could use the money but I really didn't need it. My normal position at work only requires me to drive short distances.
I took this job an with in 5 month of driving 10 strait hour a day .I get hit with this. I'm sorry I'm really not the kind of person to get down, but boy I'm down. I think it's starting to hit my wife that this my be it for me. This thing is a life changer. I'm bewilderment at the fact that this may be the end of my career and leading a normal life.i have to get out of bed now don't feel like it but have a meeting to go to.
As always I look forward to your response.
Thank
Redz

Posted: **Thu Apr 19, 2012 2:19 pm**

Redz wrote:I'm a little bewildered,If almost no doctors know PN how do they know what script to write? And I know you need a script for an MRI. But shouldnt Dr potter know what to look for.

The script wording was originated by Ali, (PNE patient) because most doctors don't know what to write. Dr. Potter does many different scans, for many different ailments. I could be wrong, but prior to her gaining expertise with imaging the pelvic nerves, her specialty was with orthopeadic imaging. It's standard practice when ordering an MRI for a physician to detail the patients symptoms, looking for a cause. I would like to emphasize that Dr. Potter is a radiologist. It's not for her to medically diagnose or recommend a treatment plan.
What has your PT had to say about your symptoms? Is this someone who specializes in pelvic floor issues?
Feeling down is normal, Red. ANYONE would feel this way, put in this situation. It's a looooooong journey with no direct paths to cures or even answers. However, I don't think
"this is it for you". You've only just begun your journey. Unless of course, the way you're currently feeling is acceptable to you. I don't get that impression from the little I know about you, though. Unfortunately, chronic pelvic pain - regardless of the cause is definitely a life changer. Not only for you but for your wife and everyone you're close to.
First things first, though - you need a diagnosis for your pelvic pain. Has your PT said anything specific about the PN or PS?
Kind regards,
Karyn

Posted: **Thu Apr 19, 2012 3:39 pm**

Thank you for your up lifting words Karyn It really helps.

The PT . He's very honest in the fact that he is not a pelvic floor guy. I will not be going to the PT for now. I get no relieve. However after causing a flare up on Tuesday night i went to the trigger point massage therapist. I had a veeeery tender area in the right butt cheek. The Piriformis muscle was in serious spasm. I almost jumped of the table while she was woking it,it was in a knot. The trigger piont therapist thinks the PN pain is caused by the Piriformis inflamation and I as well hope this pn pain is caused by the Piriformis muscle.I'm will be going back to pain management tommarow. He wants to do the pudendal nerve block. That will at least give me a diagnosis. I will however talk him into botoxing the Piriformis First as you and Colluma suggested. If the Piriformis injection knocks out the pain we will know it is the Piriformis causing the pn,
Your impression is correct karyn I'm fell better about the situation today. I will want to get up today and work a 12 hour day.im a total type A personality. I do understand that DR potter is a radiologist. But i would think that she can dignoses Pn by looking at the MRI to see the pn intrapment or impingement. I understand she cannot give treatment.

Do you think the script I posted is the right script for dr potter?

I will be showing it to the pain managment doc tommarow I wiil see if he agrees.

If you could answer a couple of question.

If he botoxis the Piriformis and it relieve all the pn pain.. Its the Piriformis muscle giving me all the problem would you agree?

If not. Would I then go ahead and get the pudendal nerve block or wait for DR potters MRI. I'm confused which comes first.

I be looking forward to your answers .
Thank you as always
Redz

Posted: **Thu Apr 19, 2012 6:06 pm**

Hi again Redz,
I think you should have some mention of the piriformis muscle on the script. It seems to be more unusual for PS to cause PN than the other way around, at least as far as people reporting on here. That may be because this is a pudendal site rather than a piriformis. Not sure.
Glad you are feeling a bit more relaxed now.

I know how much we feel the need to search for appropriate answers but the condition doesn't lend it'self to quick and easy answers, unfortunately. Especially when there are a number of symptoms involved.
Good luck with any botox. I would say the obvious best scenario would be that a piriformis botox shot taking away all PS and PN symptoms would be fantastic, job done!

But things may take time to calm down so I wouldn't take negative initial symptoms as an ultimate answer.
I have scar tissue in/around my p muscle which the botox has no effect on as it has no 'give'in it like ordinary muscle tissue. So although the intense tight muscle pain was gone for a good while, I didn't have any other results from it as my pudendal nerve is very probably trapped in this scar tissue. It may be that there is another entrapment further down the nerve but all indications in my case point to the p muscle being responsible.
My reaction to the injection was a clear indication that I have PS, as you undoubtedly do too. As you mentioned, talk about jumping off the table

Woah!! but then any massage or acupuncture into the muscle showed the same thing, I just didn't levitate quite as high.
Let us know how it goes. It would all be 'very interesting' in a pelvic detective kind of way, if it didn't hurt so much!!
Take care,
Helen

Posted: **Thu Apr 19, 2012 6:36 pm**

Hi Redz,
I agree with Helen about having the piriformis added to the script for potential pathology. Is your PM Doc experienced with administering PN blocks?
Yes, I do agree that if the injection to the piriformis relieves your PN pain that it would be indicative as a potential site of entrapment or compression. Since you've got such a long wait to have the MRI, it probably wouldn't hurt to proceed with the blocks, as those trump the MRI findings. It's the blocks that a PN specialist will consider as a true diagnositic.

Redz wrote: I do understand that DR potter is a radiologist. But i would think that she can dignoses Pn by looking at the MRI to see the pn intrapment or impingement. I understand she cannot give treatment.

It's Dr. Potters job to report the findings of your images. She doesn't and shouldn't diagnose.
I'm sorry but not surprised the PT hasn't been helpful. I am proud of you for realizing it though, and not continuing to subject yourself to more pain. You may find that the trigger point therapy increase your pain as well, due to having someone apply direct pressure to an already irritated nerve (s).
Do you have any hip pain at all, Redz? Also, could you please clarify your urinary symptoms for me? I know you originally saw a urologist in January for painful urination, but I thought I read in one of your posts that you didn't have issues with bowel movements or urinating?

Posted: **Thu Apr 19, 2012 7:41 pm**

The other thing Redz, is that if you have botox and then the imaging, your P muscle should look relaxed and therefore not indicate a problem. As Karyn says the blocks will always trump the scan. Well said, as per

Posted: **Thu Apr 19, 2012 7:54 pm**

Hello, Fabulous Helen! I have a question for you: Do they always use BOTOX for the piriformis injections? Inject with anything else?
Question for Redz - any sciatic pain?

Health Organization for Pudendal Education

Can piriformis syndrome cause pudendal pain HELP...

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Re: Can piriformis syndrome cause pudendal pain HELP...

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