New Member Wondering What Treatment to Try Next

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.

New Member Wondering What Treatment to Try Next

Postby Carbon3 » Fri Jun 09, 2017 9:08 pm

Hi,
I'm new here. I've had PN for a little over a year. I had a hysterectomy that was closely followed by three pelvic reconstructive surgeries. When I woke from the third and final surgery I was in excruciating pain like I had never felt before. My surgeon instantly recognized my symptoms as PN but she didn't know how to treat it. Since then I have found a great urogynocologist who is helping me. I'm also seeing a pain management doctor and a pain psychologist. Originally I couldn't walk or sit down. I've made a great deal of progress in that I can now walk and I can sit for about 15 minutes a day but of course I would like to be cured. I'm taking 3100 mg Gabapentn daily, 30 mg Cymbalta daily and 10 mg of Norco every 4 hours. I also use valium suppositories at night. This combination of drugs does not totally eradicate my pain but it does keep in bearable. I had a pelvic MRI that showed no tumors, scar tissue or any other obvious issues in my Alcocks canal but of course the radiologist couldn't see the nerve. The treatments I have had so far consist of vaginal PN blocks combined with Botox and CT guided PN nerve blocks. Each PN block cured my pain 100% but the results were very short lived. The vaginal block relief lasted less than a day and the CT guided block relief lasted about 2 days. Both the Botox and the CT guided blocks softened my pain but that is all. I've considered physical therapy but my doctor has advised me that I am in too much pain at present to handle that right now though she does think it's a good idea in the future. I live in Southern California. Here is my question: I don't know what treatment to try next. Any opinions would be welcome. Thank you and I apologize for this lengthy post.
Carbon3
 
Posts: 3
Joined: Fri Jun 09, 2017 8:00 pm

Re: New Member Wondering What Treatment to Try Next

Postby April » Fri Jun 09, 2017 11:47 pm

Hi Carbon3,

Welcome to the forum. That all sounds really difficult. Have you reviewed the treatment list on the main page of this site? It's here: http://www.pudendalhope.info/node/11. Cryoablation is getting attention on the forum these days, because several patients have improved with that. I'm going to give that a try in a few weeks. Physical therapists who know a lot about pn can be an informational resource (both diagnostically and regarding treatments and doctors), so if you can find a physical therapist familiar with pn, you might give it a try. You could just ask her to not touch the nerve. (My pt doesn't touch my nerve).

April
April
 
Posts: 150
Joined: Fri Jun 19, 2015 9:59 am

Re: New Member Wondering What Treatment to Try Next

Postby Carbon3 » Sat Jun 10, 2017 5:20 am

Thank you. I do know of a great PN physical therapist. I will contact her and I will check the site you mentioned. Your reply is much appreciated.
Carbon3
 
Posts: 3
Joined: Fri Jun 09, 2017 8:00 pm

Re: New Member Wondering What Treatment to Try Next

Postby Violet M » Sat Jun 10, 2017 5:51 am

Hi Carbon,

Just wondering if any of your reconstructive surgeries included mesh which can cause a lot of problems. Another consideration is a possible stitch into the nerve -- which has happened to other women before. Either of these would be consistent with severe pain immediately following surgery. Dr. Hibner would be the expert to contact in case of either of these problems. You might also want to have a look at my phone conversation with Dr. Jarnagin posted on the homepage at pudendalhope.org. There are some excellent PT's in So Cal if you just want to be evaluated. Some of them are very experienced and might be able to shed some light on your situation.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
User avatar
Violet M
 
Posts: 5467
Joined: Mon Sep 06, 2010 6:04 am
Location: United States

Re: New Member Wondering What Treatment to Try Next

Postby Carbon3 » Fri Jun 16, 2017 2:26 pm

No mesh however there is one stitch in the nerve. My surgeon was aware of it but unable to remove it and told me so. Thank you for your reply.
Carbon3
 
Posts: 3
Joined: Fri Jun 09, 2017 8:00 pm


Return to WELCOME CENTER

Who is online

Users browsing this forum: No registered users and 2 guests