Health Organization for Pudendal Education

Hi everyone,
I'm glad to have found this forum. I have had PNE for several years, believed to have been caused by previous pelvic surgeries and a fall that caused injury to my pelvis and SI joints. After seeing numerous doctors, as many here have done, a PT told me about Dr Weiss in San Francisco about a year and a half ago. After several visits he diagnosed me with PNE and although he tried he could not release the nerve and sent me to Dr Hibner. In January I had PN decompression surgery with Dr Hibner. It was a very rough recovery to say the least and I would never want to repeat it. Now, nine months later, I'm getting better but am still having difficulties sitting, even with a cushion. I've started walking and was okay at first but after a coupple weeks am noticing a big increase in nerve pain. I was wondering if anyone who has been through this has been able to return to an active life style. I get tired of laying around the house. Thankfully I can work at home but even that has been greatly limited.
I'm seeing a PT who is helping me very much and hopes to get me sitting in the near future. I'm on several pain meds still, including neurontin at 3600mg a day. I have good days with only a 4 to 5 level pain and then some with 8 level pain. I'm still learning my limitations but long to get going again. It has been four years since the PN pain began. I would love to hear suggestions that have helped others. I love hiking and horse back riding but fear both may be off limits for good.
Thank you,
Trudy

Trudy,

Welcome to the group. I live in Steamboat...I see you are in CO as well? Have you found a good PT there? I have seen Terri Nishimoto downtown and she was great. It isn't convenient for me to get there but I see her once in a while.

Hope someone out there postop has some advice for you.

cari

Hi Trudy,
You have been through such a lot. I'm sorry that I am not able to offer good advice as I haven't had surgery (yet) You seem to be doing everything right with PT etc? ? ? What does Dr Hibner say? all I could suggest is a Hollis Potter scan or similar to see how things have settled down? ?
Good luck
Helen

Hi Trudy,

Yes, many people get better and return to a fairly active lifestyle. I can hike now, do a lot of yard work, and I sit at work for many hours a day but it took several years to get to this point. With your previous injury and possible ligament damage you are most likely going to have to be careful the rest of your life but given a bit more time hopefully you will be able to resume a somewhat active lifestyle. I used to love horseback riding too but I'm not brave enough to try it again.

Five months after surgery I started walking 5 minutes a day and each week increased it by 5 more minutes until I was able to walk 45 minutes a day on a level surface. Now I can hike up and down hills. It's very important to take things slowly and remind yourself frequently that it takes TIME and patience to heal from PNE surgery. I didn't start PT until 11 months post-op and even that was difficult. I couldn't really sit much until 18 months post-op and even then it was touch and go for several years. So hang in there and keep lots of ice packs handy.

Violet

Thank you for welcoming me to the forum. I'm happy to be here.

Violet, I'm glad to hear that you can sit and hike again, that was encouraging. A couple days ago I drove to town for the first time since the surgery and I was excited about that. I still have trouble sitting and hope I will be able to do more as time goes on. It doesn't take much to cause a flare up so I'm cautious about everything.

Cari, I live is Colorado Springs and see Mary Hollenbeck in the Springs and recently started seeing Hollie Neujahr in Denver. They are working together so I don't have to drive to Denver as often. Even when laying in the back seat, it's a long time to be in a car. They are both very good. Hollie specializes in PN and has really helped me a lot.

I wish everyone hope and healing!
Trudy