Health Organization for Pudendal Education

This is a CASE STUDY, and one area for anybody willing to voluntarily give information for everybody who wants to be able to enter their information regarding symptoms, tests, meds, diagnosis and cause of PN, etc. This is completely voluntary and will allow those who want to share this info with other members one place to share it at instead of repeating everything multiple times. I really wish that everybody who is okay with sharing this info, would please post as much info on their symptoms and diagnosis in order for us to all draw correlations to our symptoms since there are few specialists out there for this, and it may help us all at least be able to see which symptoms are the same as some of us, which area of entrapment we may have, what diagnosis' are similar to ours, or which specialists to see that have helped us and which ones we should all see. Please post your info here, and share all your symptoms, diagnosis, tests,etc. done. If everybody does this it will help us all to maybe draw some correlations with some of the same symptoms we all have because this is a complex problem with few specialists out there and a low success rate from surgery because I feel that a lot of people are not correctly diagnosed prior to surgery as far as what their exact problem area, exact entrapment area is, and exact cause is, which I personally know of some this to be the case for. Therefore, some people are operated on either the wrong area of the body, or for the wrong cause. The Truth is Out There. There are many muscles, and branches of nerves and other causes involved such as SIJD, Piriformis Syndrome, adductor muscles, ST and SS ligament abnormalities, and also conditons which mimick PNE or PN such as genitofemoral nerve branch in the Psoas Muscle, lower back (Lumbar) disc problems. For the sake of humanity, your own benefit and others, and bringing about better diagnosis and treatment and help for this, Please, everyone add your info, just enter the same info in the format like I have done for mine below: I have also included an empty template at the bottom below my info for others to copy and use to post their info. This is an informal study and aid to hopefully bringing change, treatment success, and better help for us all. There are also certain parts of the pudendal nerve, which only one PNE surgeon currently in the U.S. and one in Austria can reach if this is your cause, called the dorsal branch and distal part of the Alcock's canal. Dr Dellon is the one in the U.S. who does this surgery.

MY SYMPTOMS, TESTS, ETC:

Date Started: 1/2010

How Started and initial symptoms: Initially burning in urethra, 2 weeks later pain in perineum, and urinary frequency (peeing up to 5 times per hour), and urinary hesitancy, some pain in lower abdomen, and urinary urgency then started antibiotics for 2 months even though urinalysis was normal with no help, Pain in perineum when sitting and better standing or laying down2 months later put on Diazepam. After put on Diazepam Urinary symptoms and perineum pain got 95 percent better by 5/2010

Tests, Results, Dates:
All blood and urine tests normal except for low vitamin D and low Testosterone
4/2010 Cystoscopy Normal

4/2010 Prostate Ultrasound Normal

4/2010 Abdominal Catscan Normal

8/2010 Physically Reinjured my upper perineum and adductor muscle areas by standing up against current of ocean at beach from a squatting position Pain came immediately back and urinary frequency, urgency. The urinary problems got 85 percent better and pain 50 percent better after several months, but still have pain in perineum when sitting and some urinary urgency when pain is worse. Saw orthopedic sports medicine doctor who diagnosed me with PNE. I also had pain in my left adductor (upper thigh) muscle which connects to my lower pelvis and upper pelvis bones, (pubic ramus, pubic symphisis, etc) when I stood up against the current and felt the pain.

8/1/2011 Reinjured my left and right adductor muscle (thigh muscles) and also injured lower perineum doing light gardening. These thigh muscles which connects to my lower pelvis and upper pelvis bones, (pubic ramus, pubic symphisis, etc) when I stood up against the current and felt the pain. My urinary problems, perineum pain, came back and I got a new problem of burning in the back of both of my thighs both inner thigh areas from my perineum to my back of knee area made worse when sitting, and I also temporarily got some occasional shooting pains to my penis after this, which has stopped, but the thigh burning has not when sitting yet.

8/2010 Lumbar Spine Back, Thoracic Spine, Cervical Spine, and Brain MRI-Normal

9/2010 Scrotal ultrasound because of pain in scrotum and testicle area-Normal

8/2010 Cat scan guided pudendal nerve block on both sides with anesthetic and steroid gave total pain relief in perineum for 3 to 6 hours and some pain relief from steroids after 3 days for 1 to 3 weeks.

12/1/2010 Cat scan guided pudendal nerve block on both sides with anesthetic and steroid gave total pain relief in perineum for 3 to 6 hours and some pain relief from steroids after 3 days for 1 to 3 weeks.

12/15/2010 Cat scan guided pudendal nerve block on both sides with anesthetic and steroid gave total pain relief in perineum for 3 to 6 hours and some pain relief from steroids after 3 days for 1 to 3 weeks.

7/13/2011 Dr. Hollis potter Pelvis MRI showed varices bilaterally for dorsal nerve branch of pudendal nerve

8/23/2011 Diagnosed with Dorsal branch of pudendal nerve entrapment by Dr. Lee Dellon in Baltimore


Current Symptoms: Pain straight down middle (vertically)s of perineum from right above rectum to just below genitals (superficial part of perineum bulbospongious muscle area), and upper back part (posterior) of both thighs and also both inner thighs that goes to the knee only and not past the knee, when sitting, after sex, driving, lifting, digging, climbing a lot of stairs and occasional urinary urgency

Doctors Seen: Sports Medicine Doctor, Dr Dellon, Multiple Urologists, Gastroenterologists, Primary Care Doctor, Physical Therapist

What makes it better?: Standing, warm baths, putting ice cubes in zip lock bag with litte bit of of water and applying to painful areas for 5 minutes twice a day (Not directly to skin) walking short distance sometimes

What makes it worse?: squatting, sitting, sex, lifting heavy things


Current Medications: 10mg Tramadol twice daily

5mg Diazepam Twice Daily

Future Tests or Surgeries Planned

Scheduled Left Side Pudendal nerve block test to see if entrapment is on both sides or one side

Scheduled Dr. Hibner 11/2011 Physical exam by Hibner to confirm I have only dorsal nerve entrapment and not any other branch of pudednal nerve entrapped

Scheduled Decompression of Dorsal Nerve Surgery on both sides of dorsal branch of pudendal nerve and perineal nerves just outside of alcock's canal with Dr. Dellon



BLANK TEMPLATE BELOW FOR YOU TO COPY AND USE TO POST YOUR SYMPTOMS, CAUSE, TESTS, ETC:

Date Started:

How Started and symptoms:

Tests, Dates, and Results:

Doctors Seen:

What makes it better?:

What makes it worse?:

Current Symptoms:

Current Medications:

Date Started:

Surgeries:

Current Symptoms:

Current Medications:

Future Tests or Surgeries Planned:

Current Medications:

Shawn,

Haven't I seen this post already? Or is this something new?

I'm just curious why nobody else so far seems willing to participate in the Important Case Study regarding everybody's symptoms, tests, diagnosis, causes, and doctors seen? I think it will greatly benefit us all as a group and also help many new people and people who have been on here longer to figure out the puzzle of what may be the cause of their problems or at least get into seeing the right doctors, or tests?

Shawn,
I think what Lernica is referring to is: you generate the same posts in different areas. Perhaps you haven't noticed, but most members do post their symptoms, diagnostic testing and doctors they've seen upon introduction. Many of us also summarize this info in our signatures.
Best regards,
Karyn

Shawn, I see what you are trying to generate. I think it is a good idea to do this- to see if there are similar patterns. Perhaps a graph of some sort would be interesting. My symptoms are 'SO' similar to yours except that I 'can' sit throughout the day unless I lift something heavy, sex or drive for more than four hours.
These mentioned things will cause a flare up. When you saw Dr. Dellon, did your insurance pay for this? Did you see Potter in New York prior? Thanks Shawn.

Hi Shawn - in answer to your question as to why nobody is posting - you do post the same thing in lots of different places and this can be very offputting, what tends to happen when people do this is that the posts simply get ignored. I'm sure you have noticed this happening when other people have done the same thing. Best thing to do is decide where your post fits best, and put it there.

Also, people share what they are comfortable with - for lots of us, this is not much as the whole thing is so embarrassing. Also, for some people, talking about it can have the effect of making the pain more real, and harder to deal with.

I do take your point though that it would be interesting to have a summary of all these things.

Hi everyone, I understand everyone's points and they are all good points. I would just like to have some kind of good case study as it would be very interesting and maybe helpful. The bottom signature allows us to post some information, but not a complete list of information. This is a totally voluntary thing for anybody to do, but I guess I understand why some may not want to. Anyways, thanks for all of your input and hope you are all doing okay.

Shawn

Hi everyone, I understand everyone's points and they are all good points. I would just like to have some kind of good case study as it would be very interesting and maybe helpful. The bottom signature allows us to post some information, but not a complete list of information. This is a totally voluntary thing for anybody to do, but I guess I understand why some may not want to. Anyways, thanks for all of your input and hope you are all doing okay.

Shawn

Shawn, the people who wrote the symptoms, diagnosis, and treatment pages on this website have been studying the physician's literature and following the forums for years and we have already tried to summarize the information obtained from numerous patients on the pudendalhope website. I hope you will find the information helpful.

You have sent me some good suggestions with info you feel should be added and I will work on adding it soon. Members who think of other information that needs to be added are welcome to send me a PM.

Violet