Health Organization for Pudendal Education

Lernica, I am trying to ease my mind about the MRI. Is this the 'only' way doctors can tell if a nerve is entrapped? I am hoping that my neurologist is correct. My pain started as a burn eight weeks ago, now it is only intermittent. You're right about the pain moving around-sometimes it can burn, ache or feel like pinching, tickling or a needle poking in different areas. It's really not predictable. What are your current symptoms? How have you backed off of what you use to do? I can walk about half a mile then I feel spasms in my rectum...I now know when I have to ease up. But, what's really weird is that when my rectum begins to burn it moves up higher to the private area and YIKES! Not good at all. Have your symptoms remained the same since they started or have they become better as the nerves have tried to heal? Thank you. Just wanta know how other people's experiences have been over time.-Alan

Hi Alan,
I don't want to be depressing here but my symptoms have gotten worse over the last 4 years. My sitting time has decreased and I have given up ejaculating due to the pain. I still enjoy sex with my girlfriend but not ejaculating has certainly made it a different experience. As with all the other limitations in my life (sitting mainly for me), you just have to make accomodations and get away with what you can. Your symptoms sound pretty nasty and you have my sympathy. I do recommend trying any medications that will help you get outside of the pain without intolerable side effects. This will improve your coping skills and mental outlook. Also, from what I have read all MRIs are not always diagnostic when it comes to pudendal entrapment. Nerve blocks are often considered diagnostic by the PN specialists but the main determinant is clinical history. Often, the only sure answer to the question of entrapment is when you are on the table in the OR.

All My Best,

Don

Alan wrote:Lernica,
What are your current symptoms? How have you backed off of what you use to do? . . . Have your symptoms remained the same since they started or have they become better as the nerves have tried to heal? Thank you. Just wanta know how other people's experiences have been over time.

Current symptoms: Can't walk recreationally, can't run, can't go to the gym, can't sit more than 20 minutes, but can stand and can swim.
Backing off normal activities: For me, the PN pain came on very very gradually over a number of years, and so very gradually I "backed off" my normal activities, one at a time.
Symptoms improving? No, PN symptoms are getting worse, but my acceptance of them is getting better. You just modify and modify and modify your lifestyle to "make it stop hurting", and then, to have a couple of pain-free hours seems miraculous and makes you very happy! My spirits are quite good despite everything.

I've resigned myself to live with this condition for a long time and try not to sweat about it. Life is still good.

Was contacted by Kaiser Hospital(where my insurance is though) and told that I finally get to see someone about anesthesia and pain blockers. I will have someone go over my MRI and talk about the nerves that they see. I was told that no nerves appeared to be entrapped so, my question is 'how long does it take for damaged nerves to heal?' I sat on my pillow in the classroom while teaching but stood most of the day. Still had oncoming pain set in during the afternoon. It's amazing how bad it can hurt. Fortunately it does eventually subside. How is everyone else doing? Any changes in how you are feeling or healing? When the MRI is shown to me again, I may try and get a second opinion to be sure that there is in fact no entrapment. Hope everyone has a safe Memorial Day with your friends and loved ones.

Alan,
I do not understand how Kaiser can exclude PNE with their MRI. Nerves are just not visible. They probably can see secondary changes like asymmetrical pelvic muscles but pudendal nerve entrapment is not something that can be diagnosed with a standard MRI. Didn't they tell you that the MRN did not show small nerves?
Kaiser's policy is to prescribe medication for PNE and if that does not work, they can offer neuro-stimulation. They are against PNE surgery so don't expect support on that front.

Alan,
If you have a choice of health plans through your job, I would highly advise switching to a more costly PPO or anyone but Kaiser when open enrollment comes around in Dec. if that option is available. As Ezer said, Kaiser is pretty inflexible about any problem they can't handle in house. I know this all seems pretty overwhelming at first but you'll survive.It's amazing what people can cope with. Thank heaven that you have a job where you stand up most of the time (as do I). This is a huge advantage in dealing with this condition. You could get a lectern if you don't have one already. As I said, get some meds that work for you and a good cushion for sitting. I have an IC cushion (IC network on web) on a chair in the break room and one in my car and an Airgo Active Seat Cushion (Amazon) that folds up and tucks under my when I have to go sit somewhere else. If people ask, I just tell them I have back problems. As for my friends (at home and here on the forum), they get all the gory details. We've all been where you are now. Hang in there.

Best Wishes,

Don

Alan, did you get a copy of your MRI? You can request a disk, it's your medical record so be sure to get copy if you don't have one to include in your records. If its anything like the one my Neuro did it won't show anything. He didn't even request they scan the pelvic region.

Alan,
I also had a surgery with dr. Filler which did not help me but made me have some walking issues. I have a friend who got significantly worse (bedridden) post surgery with Filler. I advice you to proceed with caution in my humble opinion, as there is a definite marketing push going on... but I haven't heard a single story match with the marketing.

Sorry about your injury.

In regards to Dr. Filler I can attest that his approach to surgery does appear to be the small incisions where he thinks the entrapment is located. He does use nerve block injections to isolate the area first then does the surgery. My wife has had three surgeries with him and we thought he got it on the last one but now not sure. six months later all the pain came back. She also suffered peroneal nerve damage during the surgery due to the use of the compression stockings. One surgery to release an entrapped nerve on the left leg helped but was not the fix. So now she has PN and leg pain. Three years to the day today this nightmare started and we see no end in sight. For the spouses supporting their loved ones you have to have patience and except what life throws at you both. This is not an easy road for either but the one with the pain has it the worst.

Had a caudal nerve block in my spinal cord last week as neurologist thought it may help with any pain. He saw a small bulge in my lower back S1-S2. Yikes-the pain shot up two to three times what it was prior to the injection. After several days the pain went back down, but is still worse than before the steroid injection. I'm back to the neurologist in July. A lot of hoops to jump through as 'matter of illiminations' take place. I 'told' the neurologist that I thought that I had injured the pudendal nerve. He told me that he has only seen three cases like this in the past fifteen years. I'm going to ask for a pudendal nerve block next. If the doctor can't provide this then I am going to ask the insurance company to pay for me to be seen by Dr. Sheldon Jordan in Santa Monica. Does any one know if insurance companys reimburse or have to pay for continued treatment for this condition if they cannot provide the necessary expertise in solving this problem?