Health Organization for Pudendal Education

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.

Hello Redz,

Welcome to the forum.

Redz wrote:
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,

Yes.....or the other way around -- pudendal nerve pain can cause the piriformis muscle to go into spasm.

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

Yes

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

Possibly...can't say for sure. If you have nerve entrapment it 's best not to sit if you can avoid it. Easier said than done off course.

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

Check the list of docs at this link: http://pudendalhope.org/node/58

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

Some people have gotten relief trying physical therapy or with lifestyle changes. Cured might be the wrong word though because there's no guarantee that it won't come back if you go back to the same lifestyle, etc.

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

Won't necessarily rule it out but might point more toward a muscle tension issue than a nerve entrapment.

Hello violet and thank you for your response .

Please allow me to amplify one of my previous questions.

Can Piriformis syndrome agitate the pudendal nerve. I guess what I'm asking is that since the Piriformis is so close to the pudendal nerve. Could it be that swelling or spasms of the Piriformis triggering pain in the pudendal nerve. Could there be nothing wrong with the pudendel nerve other then the Piriformis agitating it. Have you hear of any cases where the problem lyes in Piriformis not the pudendal?

Also why is pregisone not a treatment for pn neuropathy? Or is it.


Thank you
Redz

Hi Redz,
You may want to check out this thread by another community member:
http://www.pudendalhope.info/forum/view ... 441#p24441
She recently had surgery on her piriformis, which was entrapping the PN and sciatic nerve. Many other nerve entrapments were addressed during this same surgery.
Best regards,
Karyn

In NYC there is Dr. Jain and Dr. Leff. They are not pudendal nerve specialist per se but do treat patients with pelvic pain. It's been 5 years since I first saw Dr. Jain and at that time he did not take insurance so I had to pay upfront and then get reimbursed. I did like him but at that time when I asked him if I had pudendal neuropathy he told me we would have to wait and see and try blocks maybe at a later date. I did like him but it was a 5 hour drive for me together with the expense and I knew I had classic PN I went looking for someone a physician who specialized in PN.

I also saw Dr. Leff in Manhattan one time when neurology thought I should see him. He does CT guided botox injections and trained under Dr. Jain. Dr. Leff does take insurance and his office staff was quite nice. Dr. Leff does not believe in surgery and his office at the time I saw him, maybe 4 years ago, had alot of alternative treatment options such as Feldenkrais, counseling, etc.

Dr. Potter is a radiologist who has developed a MRI technique to image the pudendal nerve and the artery and vein that run with it. If you ever can get your insurance company to pay for another MRI she would be the one to do it. She is at the Hospital for Special surgery. If you put her name in the search you will find her contact information and what needs to be on the MRI request.

If you want to see someone who specializes in pudendal neuropathy you have to travel. There is no one in NYC who does. The closest is Dr. Conway in New Hampshire. Dr. Howard is in Rochester, NY but he does not treat male patients.

Good luck and keep us updated on your progress.

Thank you nyt, Karyn and violet for your response.
Wow I guess I was lucky enough to find this forum. I posted a question regarding the pudeldal pain and the piriformis and i got an answer. This is a great forum with caring people. All of you should be proud that you are helping others. I wiil do the same..... I'm shocked at the lack of doctors who are available to dignose and treat this disabling affiction. I have had this for only 4 month and I'm horrified in the pain people suffer. I live in NJ a Mecca with doctors to my north in NY, west,in Philly. I can throw a stone an hit 10 specialist from my front door but none that even really know about PN. crazy...

I went to see a new doctor today asked if the Piriformis muscle can be pressing up against the pudendel nerve. His answer NO..Well we know now he's wrong. This is my frustration as far as doctors no one is on the same page. And this doctor seemed to know what he was talking about.



Im am grateful for this forum but im a little confused as to the pergrestion of the affiction.Please if any one can answer a few more questions I would be greatfull .

I have pain only when I sit. The pain is in the prenium... Level 3 pain.
Also both sides of the pirformis but that has Sum what diminished . I'm 4 month in to this condition.

Question..

1.Does the history of this affliction dictate that it will get worse?

2. Should I do a full court press and get the nerve blocks to see if they help,and if they do not should i pursue surgery?immediately.

3. I will be going back to work next week. Since i drive for a living should I not return to work and move forward in treatment?

I will be driving 20 to 30 min and then stopping for 30 min will this make it worse?


4.I'm only on lyrica 100mg twice per day. Seem to be holding my own. Is this a low dose?

I know some of theses questions are hard but please be honest. There really is know other please to get answers.

Thank you
Redz

Redz wrote: 1.Does the history of this affliction dictate that it will get worse?

I think, unfortunately, that for most of us the answer to this is yes. But it does depend on individual cases, and on what you do by way of lifestyle changes.

2. Should I do a full court press and get the nerve blocks to see if they help,and if they do not should i pursue surgery?immediately.

I don't know what a full court press is, sorry. I do think it would be a good idea for you to see a doctor who specialises in PN problems and see what he thinks.

3. I will be going back to work next week. Since i drive for a living should I not return to work and move forward in treatment?

I will be driving 20 to 30 min and then stopping for 30 min will this make it worse?

I don't think any of us can advise you regarding whether you should return to work. Driving for 20 to 30 min and then stopping for 30 min - possibly this will make things worse, possibly it will be ok. I think there is only one way to find this out, try it and see.

4.I'm only on lyrica 100mg twice per day. Seem to be holding my own. Is this a low dose?

This is a moderate dose. Personally, I was noticing some improvement at this dose, however when the dose was stepped up to 250mg that I noticed a big improvement. If I had not had the surgery, I'd have asked to take it up to the full dose of 300mg.

Hope this helps.... sorry that you are in such a difficult situation.

Hi Redz,
Calluna did a fine job of answering your questions. There's just a couple of things I'd like to add:
1. Whether you have PN entrapment or sciatic entrapment, sitting will only aggravate your symptoms because of the pressure you're putting on an already injured nerve.
I agree that none of us can advise you what to do about your job. It really does depend on your individual tolerance.
2. I suggest getting an injection to the piriformis before PN blocks.

Redz wrote: I live in NJ a Mecca with doctors to my north in NY, west,in Philly. I can throw a stone an hit 10 specialist from my front door but none that even really know about PN. crazy...

Yup - frustrating, isn't it? I can well relate; being 30 minutes from BOSTON with no help from any of the major (or minor!) hospitals!

Redz wrote:I went to see a new doctor today asked if the Piriformis muscle can be pressing up against the pudendel nerve. His answer NO..Well we know now he's wrong. This is my frustration as far as doctors no one is on the same page. And this doctor seemed to know what he was talking about.

Right. Not only does no one treat PNE in my area, no one addresses PS, either.

Redz wrote:He believes it Piriformis syndrome and has given me PT

Does this mean you're doing self PT at home, or have you actually been evaluated by someone in this field?

Redz wrote: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.

Your doctor at Rothem is correct. Normally, the PN won't show up on an MRI. However, Dr. Hollis Potter at the Hospital for Special Surgery in NY is able to capture PN entrapment images. Not sure if she can pick up abnormalities of the piriformis, though. Would your insurance cover a scan at HSS?
Best regards,
Karyn

Hi Redz,
I have PS and PN as a consequence of scar tissue and spasm of my piriformis muscles although, as you are finding it is a fight to get this diagnosed properly in line with such obvious symtoms. I also have similar 'saddle area' and buttock numbness you describe.
Hopefully because your problems have no preceding 'trauma event' conservative treatments will help enormously. I would say that if your p muscle is very tight try some easy stretches, but very easy ones as sometimes they can flare pn symptoms so if you do try them, take it gently.
Think all of your questions were answered and I agree with Karyn, try piriformis injections first.
Take care and please let us know how you get on.
Helen

Thank you Calluna,Karyn,Violet and Hellenlegs..

I don't know where to start I will try. I have a lot to say.

PT does help Karen but sometimes it seems to aggravate it. I now no what people mean by flare ups. I initially upon going out of work 4 week ago went to yoga classes on a recommendation of a doctor and I had a lot of burning in the buttock. Monday I really started to feel no buttocks burning. Well just before I got in bed tonight to write you guys i did some buttock roles with a new tube soft roller I had purchased. The PT had me do them last Friday and I felt good the next day. What I did not realize is that I only did the roles on my ham strings, NOT my butt. Well my BUTT is now on FIRE only 10 minutes later. I now know where my trigger point are. I'm now in full blown out pain,butt,urethra, you name it. I can't believe what I just did. Newbi mistake! I just went from a level 3 pain to a level 10. All within the time i started writing.
I'm wondering does anyone have a specific area that is tender that triggers there pain because I just found mine. When getting tigger point release myself and the therapist both feel the area within the glut and Piriformis that is in a knot. Does anyone else have these a specific areas? I will be going back to the new doc on friday. I will recommend starting with the Piriformis.
Heallenlegs.
What is variant Piriformis syndrome. And can it be cured by detaching the Piriformis.

Thank you karyn,I have made an appointment with Dr Potter today. Won't she her until July 6th. I have been giving my Heath plan a heavy workout.. 3 MRIs, 14 doctors visits.1 ultra sound.1 cyctoctopy. I need no preauthorization or referrals.haven't heard a pep my insurance company. I'm very blessed I have great health insurance. I don't think my insurance company will give me a problem. Usually when an employee has a serious medical condition an is denied treatment my company steps in and the insurance company backs off. I guess thats what happens when the company you work for pay to insure 300,000 employees. Karyn do you think Dr Potter will be able to help me?

Thank you
Redz