Health Organization for Pudendal Education

Hi....my story still is still so unbelievable to me...started back in 2003 when I was diagnosed with plantar fasciitis. By June of 2004, I had surgery (bilateral) which resulted in nerve damage atmthe bottom of my feet which was so painful and woke me up in the middle of the night. I was supposed to be back to work after that surgery in 6 weeks and did not go back until 5 months later as well. Anyway, to compound matters, I worked in NYC which made it impossible to handle the commute from NJ, so I had to resign in march of 2005, which was very difficult for me.

I was also referred to a pain center at our local hospital where I was on very high doses of Elavil and Neurontin to manage the nerve damage in my feet. Horrible side effects ..ie, weight gain...focusing issues..etc.
I was referred to a neurosurgeon who specializes in peripherial neurostimlators. In September 2007, I had an ANS neurostimulator implanted in the S1 nerve root which stimulated the bottom of my feet. I responded quite well to the stimulation, yet, the incision where the leads where implanted, right above my 'fanny' got infected and for 6 months in was given antibiotics to to try to treat it. Bottom line, by March 2008, cultures showed a staph infection and all hardware had to be removed. That february I started to wake up in middle of night with severe hip and buttock pain and my dr had no clue and would not consider anything to do with stimulator. I have gone thru so many tests since then with many other Drs...CT scns...MRI's, myleograms, disco grams, emg's. ...2 and 1/2 years of many Drs..lumbar injections, SI
injections, facet joint inj. Pars defect at L5-S-1 and as time was going on thru the 2 years I could NOT SIT. Pain from the bottom. I would tell Drs this and they would not get it. I had no clue about any of this PN stuff...all I knew is that I wanted to hang myself. Luckily, I was approved on disability. I have DDD. Yet, this was a nightmare. Dr would not listen.

Very frustrating. My husband would ask him if this could come from stimulator and he said no. Then, I went to a
orthopedic surgeon who specializes in coccyx..and he looked at surgery chronology and immediately said...i think you have a trapped nerve from infection in midline...and I was like... "omg..that makes sense". He also said..disc pain goes down
legs and u are complaining about midline pain...so....I go back to neurosurgeon and he looks at me and says..."I don't get that". Well, I want to have a stroke...anyway..he suggests another stimulator in that area..and I say...are you kidding? I Ihad one infection...why would I have another stimulator put in there...he didn't even think would need prophalatic antibiotics. We did work with an infectious disease dr and I knew i would ask her myself that question...anyway....I did have more lumbar injections which now looking back...I am not sure whyni listened to my pain center dr...but by august
of 2010 I was so bad....neurosurgeon wanted to schedule a stimulator trial. I was laying in bed one night in such horrific vaginal, anal agony, I googles....anal nerve pain and up came pudendal nerve neuropathy and neve entrapment. I never
heard of this condition before .....I called neurosurgeon office next day and asked his assistant if he ever does stimulators for this condition and she said "yes"...I fell into such a deep hole .....I am not sure how I have come this far I was so angry...needless to say, I cancelled that procedure. There are a lot more details to fill in...yet this is enough tomlet you know how I found out about this.

Since then. I have gone to a local neurologist...I had an pudendal emg, which was positive, and a SERt,I go to pelvic floor physical therapy and I have had 3 pudendal nerve blocks...no success yet. No success yet. New pain mgmt dr..meds: lyric,topamax,cymbalta,piroxcam, valium suppository, Opana ER and IR...I am a 58 year old who was so happy go lucky and I try to stay up and positive....I have a husband with sever fibromyalgia.....very difficult..the 2 of us living I chronic pain...I HATE who I have become.

Hello,
Might I say this pudendal care can get expensive and your care sounds like it can be funded with a medical negligence lawsuit!
You are in a good geographic location for some basic diagnostic screening:
If you check out the MRI/MRN section of this board you will see that in New York there is a radiologist Dr. Hollis Potter who has been having very good success using 3T MRI to pinpoint the location of scar tissue entrapments of the pudendal nerve. These can be surgically decompressed.
The presumptive cause of your pudendal issues would be scarring from infection. A secondary issue might be pelvic joint dysfunction caused by gait issues from all the foot pain; My pelvic pain problems were all secondary to pelvic joint dysfunction ("SIJD"), which was caused by gait problems. PM me if you do the 3T and come up negative for scar tissue (unlikely), because I know a PT on Long Island who is not listed on this site because he is a sports PT not a "pelvic floor PT" and does not "do pudendal", but I can get you in touch with him solely to screen pelvic joints, for which he is second to none in your area.
My very best to you...we have all been miserable too but lots of us have made headway and many more don't even hang around here because they are cured.

Hi.
which are the symptoms of pelvic joint dysfunction ("SIJD")?
could it cause pelvic floor prolapse or perineal descent?

mikette wrote:Hi.
which are the symptoms of pelvic joint dysfunction ("SIJD")?
could it cause pelvic floor prolapse or perineal descent?

Hi Francesca; I haven't ever heard of it causing that though I don't know enough to give you a definite "no".
Usually SIJD causes muscle spasm and hypertonicity as is found in pelvic floor dysfunction (PFD), PFD-related disorders such as interstitial cystitis, irritable bowel syndrome, or neuropathies, musculoskeletal pain, referred pain to areas such as the lower abdomen, low back pain, possible pain far away from the pelvic area due to kinetic compensation such as upper back pain, neck pain, TMJ, or headaches; and possibly notable misalignment such as a leg length discrepancy or a notable gait asymmetry when you walk up and down a hallway with somebody watching (1 hip or shoulder higher than the other, big left-right difference in arm swing or how far away from the body one arm hangs than the other).
However I do know SIJD causes muscular weakness in some of the pelvic-area muscles such as the glutes, because the joint dysfunctions turn off mechanoreceoptors: Hence correcting joint dysfunction can result in instant improvement on strength tests. So, I guess it is possible it could cause a weak pelvic floor and I just never heard of it....kind of doubt it. I don't want to tell you wrong though. I would say it's pretty safe to assume it's a no unless you have a bunch of other issues I listed: if so PM me and I can find out for sure, because now I work with the PT who corrected my SIJD and I can ask him.

HerMajesty wrote: I work with the PT who corrected my SIJD and I can ask him.

sorry one more question, how the Pt corrected? doing what?
I'm still misdiagnosed but the story would be too long to say and my english is not good enough.

you can check out the video library on how he works here: www.heschinstitute.org mainly he does not film treatment, only assessment, for legal reasons; but a couple of treatments are filmed. You can see from the assessments that he is able to pinpoint the exact pattern of dysfunction which is half the battle. Once dysfunction is located treatments are logical, to move the joint back into a functional position. this is done manually (using hands for manipulation) or by using a "passive force" such as having someone lie in a certain position over a rolled towel. The key to permanent change is gentle adjustment sustained over 2 to 5 minutes instead of brief, rough adjustment.

Hi Her Majesty,
Thank you for your reply. I will go to the MRI section of the site. One thing I did not mention, was that in 2009, this neurosurgeon implanted the stimulators in my thighs. Again, he does a lot of new procedures and developed a way to do stimulators for bottom of feet without putting leads in the spinal canal. We worked with a dr of infectious diseases and started me on vancomycin antibiotics to prevent another infection. The leads are attached to sciatic nerves behind my knees and battery packs are in my thighs. The stimulators do not work as well as this nerve damage between my legs from the S1 nerve route down, goes straight to my feet as well as anal area and rectum. When I sit and lay down, terrible pain....horrible constipation....tonite I had a terrible battle. I was on the toilet pulling my hair out.
Anyway, I don't think I can have MRI with the stimulators in my legs now. I will still look at that section. Thank you for getting back to me...I feel like such a train wreck .... And everyone who looks and me says...."you look so good". What do you do with that?