New PNer, five months in

[ntrenchard]

Hi everyone,

I am new at posting to the forum, but have been browsing for a couple weeks now. I’m a 24 year old male and my PNE came on gradually while sitting at a desk job and from a previous surgery on my tailbone. My pain (burning, stabbing, hot/cold sensations...the usual) started about five months ago and is located in the perineum/sit bones, nothing in the penile region. It ranges from 1-4 during the day w/o sitting and can go up to an 8-9 w/ sitting. I also get nerve pain in my feet. I can probably only stand for 5 minutes at a time until the burning pain comes on.

I’ve done all the preliminary work-ups and I didn’t get an answer. Now, I have been seeing Dr. Weiss and his PT’s in San Francisco for about two moths now and have just gotten my second nerve block. He directed the block at both Alcock’s canals, in between the ligaments and my inferior rectal branch (most pain in the right Alcock’s canal). He palpates the nerve through the rectum and then does a finger guided injection. The first nerve block did very little, but I was sitting a lot. Now I am not sitting at all/very little so we’ll see if that makes a difference of how long the block will last. As of now it just feels like a ball of numbness.

Yesterday I got my EMG results and it read 6.1 on the right side (Wow!) and 2.9 on the left. I think normal is 2.5. As for the PT, it doesn’t seem to be helping much. Anyway, I have been doing some research and looking ahead in my treatment and it seems likely that I’ll be getting surgery with Dr. Hibner or Dr. Castello (his associate, I think) in the coming months. Although Dr. Weiss says there should be more he can do if this block doesn’t work. He says he only had to send two patients to surgery (who knows if that's true).

Medications: I’m taking Lyrica, Cymbalta, Ambien and I just got prescribed a muscle relaxer. It’s hard to tell if Lyrica and Cymbalta are doing much for the nerve pain.

Pain flares: Come about when doing most physical activities. Wearing close fitting pants. Walking long distances.

Things that help the pain: Laying out in the sun (on side or stomach). I think it relaxes the muscles. Ice. Warm shower. Heater next to my bum.

I had to go on disability for my job and now spend most days laying on my side, avoiding extreme pain and learning about this condition. I’m hoping that if conservative treatment doesn’t work, that I’ll be a good candidate for surgery (fairly young and PNE for less than a year).

I hope we all get relief from this horrible condition someday and keep spreading the word. From what I’ve heard, there’s been great advances in this area in the last five years and I’m sure it will continue.

ntrench

[shawnmellis]

Hi NTrench
Do you have any urinary or bowel movement problems also? Those are also common symptoms of PNE. You might have one but not the other. My biggest problem of course like everybody here is bad pain in the perineum when sitting down. I don't really have much problems with bowel movements but I do have some problems with frequent and urgency to urinate sometimes. It was especially worse right after initial injury or PNE occurred. Keep me informed and feel free to ask any questions. It takes a long time for nerve problems to get better or heal
My problems have gotten a little better 10 months after my injury. Don't Give Up.I am also considering surgery if things dont improve in next 6 months to year. Keep Looking Up. God Bless.
Shawn

[Lernica]

Welcome to HOPE, ntrench. I'm sorry you've been suffering for the last five months and have had to go on disability. Your youth will work in your favour as you work at getting better. It sounds like you have been getting some good care and advice and have been doing your research. You have no doubt discovered that you must be your own best advocate and researcher into this condition.

We are here to support you and to offer you assistance to the best of our ability and experience. Best of luck with everything, and please do keep in touch.

[pianogal]

welcome. sounds like you've a good plan of action. although one thought... since this all came from a tailbone surgery, wouldn't the scarring be in that area, and are you confident dr. hibner's surgery will address that area?

just something to ask him to be sure.

[ntrenchard]

Thanks for the posts everybody. I definitely feel welcome here. Now I'll get to your questions.

Do you have any urinary or bowel movement problems also?
Shawn

No, I don't have much problems with urinary or bowel movements. I just have that common burning and electric shock-type sensation in both cheeks.

since this all came from a tailbone surgery, wouldn't the scarring be in that area, and are you confident dr. hibner's surgery will address that area?

I think scarring in that area could be an issue. However, I think the scarring is mostly on the opposite side of the pudendal nerve. I and Dr. Weiss seems to agree that the scar tissue was too tough on one side of the tailbone that it put too much pressure on the pudendal nerve (opposite side of the tailbone). My tailbone scar is on the right cheek and that is where I'm having most of my pudendal problems.

Just to update though, I have been feeling more relief from the nerve blocks than last time. I think it's more because I'm not sitting (putting any pressure on the pudendal nerve) so the steroid can do its thing. Hopefully there's some science there somewhere to back that theory up.

[Cora]

Hi Ntrenchard, So sorry to hear of your pain issues and I'm glad you are getting some help in San Francisco. Before you decide on surgery though, just to try less invasive, I hope you'll at least get a 2nd opinion consult from Stephanie or Liz over at pelvic pain rehab in San Francisco. You never know if maybe some other hands might help out,... ya know? Well, in the meantime, we are all here for you and I do hope you are feeling a little better.

Cora