Health Organization for Pudendal Education

I'm new to this forum, but am so glad to see so much information and stories. The stories help me to not feel so depressed. About 7 weeks ago I put a trampoline together for my daughter. While doing so I pulled too hard on the springs while connecting them to the frame...Immediately after I had a searing burning pain through my rectum. Later in the week, the burning pain continued, but a new pain of prickly burns(felt like thorns) radiated around my rectum. Since then, the pain moved to my testicles and up...making urinating painful. I have seen two urologists(one thought I had epididymitis, while the other thought I had prostitis). However, I never once had a fever or bacterial infection. The last urologist told me that he didn't know what was wrong with me, and suggested a nerve blocker. Last week I thought I was going to go crazy as I had to urinate every 45 min. to an hour and had terrible itching...but of course, no urinary infection either. So, now I have seen a urologist, then I saw a proctologist last Wednesday(who found nothing wrong), have had an MRI, Catscan and an ultrasound. This week I am being sent to a neurologist. I am convinced that I did something to the pudendal nerve. Last year, I had the same burning pain while lifting weights but it went away after three weeks. I thought I had a fissure or hemmoroids at that time-but the proctologist back then said everything was normal. I am hoping that this condition subsides...It makes me very depressed as it wears me down. Any helpful suggestions would be appreciated...I don't know how people survive in this condition. Thanks for listening.-Alan

Welcome Alan. I'm glad you found us so quickly after your injury and hope you will find valuable information on this forum.

To answer your question about whether people get better without surgery......the answer is sometimes, but it takes time and you will have to live a very careful lifestyle. You may have to be careful the rest of your life which can be very difficult to accept at first. You can go to the homepage and click on treatments options and then lifestyle changes for ideas. If sitting is painful, try to avoid it as much as possible and if you have to sit use a good cushion. If you read my signature you will see I got PNE from weightlifting and unfortunately, if PNE is your problem you will need to find a different form of exercise.

There are drugs such as tricyclic antidepressants -- elavil (amitriptyline) -- that might help the feeling of needing to urinate all the time. You can read through the medication section of the forum or go to the homepage under treatment options to get more ideas. There is a fact sheet you might want to print out to take with you to your appointments. You can find it in this thread: http://www.pudendalhope.info/forum/view ... ?f=3&t=953

The good news is you may have figured out your problem quickly and now you can prevent any further damage from happening by being careful while you search for treatments that will promote healing. Wishing you all the best,

Violet

Alan- where in California are you located? There are a lot of good resources in the Los Angeles and San fran areas.

merrie

I am about two hours from L.A. I have set up an appointment with Dr. Aaron G. Filler MD at the Institute for Nerve Medicine. You can google his information. He seems to have an impresive resume. As mentioned, I am a teacher. Today I allowed myself to sit for only five minutes each hour, did a lot of walking around the classroom, and used an upright tray for my desk. I am hopeful that Dr. Filler can help. He was the one that invented the new MRN to look at nerves and has developed a new technique that is suppose to be 90% successful. I hope that one day I can at least lift light weights, swim, go for walks and travel. How long have you had this condition? I take motrin PM each night to sleep. Vicaden doesn't really help. But, I wake each morning feeling fairly good, but by noon, I am hurting. I feel as if I am failing as a husband, as not sure if it would be painful to be intimate just yet. Fortunately my wife is supportive-it's just how I feel.

Alan,
Lyrica has helped me get through the day. Also, you might want to consider areas of sexual intimacy that do not involve intercourse. You have to adapt in many ways with this problem.
From what I have read on the forums, Dr. Filler's 90% success rate is a highly suspect statistic. His website makes it look like he has the answer but the reality is quite different. No one that I can recall has reported a successfull outcome from surgery with Dr. Filler. Pianogal and Ezer on our forum both had surgery with Dr. Filler. Also, he is quite expensive. Check your insurance coverage. If I was 2 hours from LA, I would go see Dr. Sheldon Jordan in Santa Monica for diagnosis and non-surgical alternatives and get on the waiting list for Dr. Michael Hibner in Phoenix in case surgery is ultimately necessary. Just my opinion.

Best Wishes,

Don

Alan wrote: I hope that one day I can at least lift light weights, swim, go for walks and travel.

alan, mykeyboard is not working so this is short -- you can swim now, it will not aggravate pain -- search my earlier posts on 'swimming '

Alan-

I echo donstore's feedback. I live in Los Angeles and am a pateint of Dr Sheldon Jordan's and I would absolutely steer you in his direction. Please read feedback from others on this site about both Dr Jordan and Dr Filler.

Merrie

Alan,
I did have surgery with Dr.Filler and it did not help me. While the MRN is a genuine and interesting invention, it is a fact however that it cannot visualize the smaller nerves.
Also you should be aware that with Dr.Filler's small incision and technique, it is impossible to go decompress the entire nerve. Based on his findings, he will pick the most likely location to decompress but if is is not the right location, you will need a 2nd or a 3rd surgery.

Thank you for your information about Dr. Filler. I ended up cancelling my appointment with him as I was finally able to get into a neurologist through my insurance company. He confirmed that no machine can see all of the small nerves as suggested by Dr. Filler. However, he said that after looking at my MRI from last week I do not have an entrapped pudendal nerve however, I obviously did do damage to them. (That was from pulling so hard on the springs of my daughter's trampoline) and from years of weight lifting. I was given meds for the nerves(can't recall the name) but, slept good last night for the first time in about eight weeks. Today I had a fairly good day but the pain feels like a 'ghost pain'. I know it's there but it's dealable. So, after reading so much good advice, I will not do ANYTHING to make my condition worse. I feel grateful that I can work, walk, play with my kids and go shopping with my wife. The doctor said that the nerve can possibly heal but can take up to two years. So, I am doing alot of praying and am thankful. Does anyone know the stages of sensations nerves go through as they heal. When I first hurt myself, I felt a burning pain. Then it would hurt for up to three hours after using the restroom. It doesn't hurt anymore when I need to go. The pain is not consistent but feels as if moving from one part to another, then subsides...no reason or rhyme.

Alan,it sounds like you have a good plan. Rest the nerve, enjoy what activities you can do with your family, and most of all, be very patient as nerves take a long time to heal. For many of us, the pain seems to move around from one part of the body to another, and in varying intensities. This seems to be the nature of the beast, so please don't be alarmed when it happens to you.

Please keep in touch and keep us posted on your progress. From what I've read about Dr. F., it sounds like you made the right decision to cancel your appointment with him.

BTW, here is my previous post about swimming (on p. 2): http://www.pudendalhope.org/forum/viewt ... 372#p11013