Hello,
I have been following the forum for many months. I have made a few posts and received some helpful and encouraging personal emails. I would now like to briefly tell my story. Seven months ago I started to display some of the horrible and painful symptoms that we all share. Four months ago I started intensive PT, acupuncture, massage, and talk therapy. Like the rest of you my life had come to a standstill with nothing but pain every day. I'm 56 years old, an avid weight lifter, and a private pilot that was pushing around 2000 LB airplanes bent over a tow bar. I'm not a big guy so This was really over doing it. In hind sight I can see that I was going to break something and it happened. If stress and difficult emotional circumstance also contribute I had plenty of that too.
The most important thing I want to impart is that the treatments are starting to work. My pain levels are falling and I'm beginning to be able to function again. I have along way to go, but considering how far down I have been, I have come a great distance. Most importantly hope has replaced despair. I think it likely that people that do recover don't bother to let the rest of us know there success stories. There are so many grim stories of people absolutely dire distress, and I've been one, That IMHO more successes should make it to this forum. That is why I am here today. As bad as is or can be, hope is essential. Keep fighting, stay positive and know that there are victories to be had.
Hope
Re: Hope
May I express how happy we are to hear of your progress in therapy. I for one would like to know what your symptoms were and how you dealt with them. It may be helpful to everyone in the group to hear your entire story.
Thanks for sharing.
kone
Thanks for sharing.
kone
Re: Hope
Breezie, thanks for posting your positive story. You're right, we really can use all of the good stories we can get around here! Hope you continue to see improvements. 
Violet M
Violet M
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.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Hope
So pleased that you have found improvements with your treatment, such good news and good of you to share it.
The very nature of forums like hope does mean that there is a tendency towards mainly problems being posted. I'm sure that your post will have given a better balance to the PN conundrum .
Hope you continue on wards and upwards.
take care,
Helen
The very nature of forums like hope does mean that there is a tendency towards mainly problems being posted. I'm sure that your post will have given a better balance to the PN conundrum .
Hope you continue on wards and upwards.
take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Hope
Thanks to those who have taken the time to read my post, and to reply. Hopefully this additional information will be helpful.
My symptoms which seemed to come out of nowhere were all in the genital area. The pain comes in two forms. First there is a constant pain or ache. It is in on spot on one side of my penis. It varies in intensity and seems to do so randomly.The other, and this is the big one, is an extreme sensitivity to ANY friction or abrasion in the same area. I literally could not move without putting myself in the worst imaginable pain. I started wrapping the area with a soft tape. It's the same stuff they use when you get blood drawn. I also started wearing light loose fitting cloths as well. This enabled the nerve to calm down a lot. I can now walk a half hour with little difficulty.
After three months of no joy with all of the western medical establishment I contacted a friend that is a PT and knows about PN and PNE. She directed me to a local PT practice that specializes in this. I've been there now four months. I also connected with a massage therapist that had been a major sufferer herself. She has a unique skill set for helping sufferers like all of us. I have to say I was skeptical but she truly delivers. I have a very fine acupuncturist. I've gone to him on and off for decades. I am definitely feeling results from this as well.
It was suggested that I speak with a grief councilor so I have.I think this was to help me develop realistic goals, and to make sure I didn't become suicidal. No doubt we've all wandered down that dark road, and it can be very dark. The discussions were helpful, but only somewhat. I've been asked which treatment has been most effective. I really don't know. I have to believe that it is the combination.
I mentioned previously that I am a private pilot. Some of the antique planes I flew for a while required my full body strength to operate the rudder pedals properly. This could be for an hour or two at a stretch. I suspect this contributed to the physical problem I'm dealing with. I'm told that stress and negative emotion are also players. Well, the world is a stressful place these days period. I had also suffered several devastating personal losses as well.
The last month or so has been a time of significant improvement. The pain is manageable and sometimes almost gone. I got checked out in an airplane and have been declared fit to fly. I'll fly solo tomorrow for the first time in six months. For me this is huge. I really thought I would never get here but here I am. I hope my story helps you to find hope for the future.
My symptoms which seemed to come out of nowhere were all in the genital area. The pain comes in two forms. First there is a constant pain or ache. It is in on spot on one side of my penis. It varies in intensity and seems to do so randomly.The other, and this is the big one, is an extreme sensitivity to ANY friction or abrasion in the same area. I literally could not move without putting myself in the worst imaginable pain. I started wrapping the area with a soft tape. It's the same stuff they use when you get blood drawn. I also started wearing light loose fitting cloths as well. This enabled the nerve to calm down a lot. I can now walk a half hour with little difficulty.
After three months of no joy with all of the western medical establishment I contacted a friend that is a PT and knows about PN and PNE. She directed me to a local PT practice that specializes in this. I've been there now four months. I also connected with a massage therapist that had been a major sufferer herself. She has a unique skill set for helping sufferers like all of us. I have to say I was skeptical but she truly delivers. I have a very fine acupuncturist. I've gone to him on and off for decades. I am definitely feeling results from this as well.
It was suggested that I speak with a grief councilor so I have.I think this was to help me develop realistic goals, and to make sure I didn't become suicidal. No doubt we've all wandered down that dark road, and it can be very dark. The discussions were helpful, but only somewhat. I've been asked which treatment has been most effective. I really don't know. I have to believe that it is the combination.
I mentioned previously that I am a private pilot. Some of the antique planes I flew for a while required my full body strength to operate the rudder pedals properly. This could be for an hour or two at a stretch. I suspect this contributed to the physical problem I'm dealing with. I'm told that stress and negative emotion are also players. Well, the world is a stressful place these days period. I had also suffered several devastating personal losses as well.
The last month or so has been a time of significant improvement. The pain is manageable and sometimes almost gone. I got checked out in an airplane and have been declared fit to fly. I'll fly solo tomorrow for the first time in six months. For me this is huge. I really thought I would never get here but here I am. I hope my story helps you to find hope for the future.
Re: Hope
Good luck on your flight tomorrow. I am interested to hear how it goes for you.
Violet
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.
Re: Hope
Hi Beezie,
Good to hear people getting better. Yeah, as you, and others, say it really is important for us still in a hole to hear of success stories like yours. And also the full details of your history which you have so kindly done. It's so important (to me at least) to know where people's pain is precisely located and what it the pains feels like and too to hear of the treatment.
Cheers and good luck to you and everyone on this site.
Jackson.
PS. Just for clarification Jackson and Jacko are two different contributors. Had I known about you Jacko at the time of registration I think I would have chosen another name to avoid confusion.Good luck.
Good to hear people getting better. Yeah, as you, and others, say it really is important for us still in a hole to hear of success stories like yours. And also the full details of your history which you have so kindly done. It's so important (to me at least) to know where people's pain is precisely located and what it the pains feels like and too to hear of the treatment.
Cheers and good luck to you and everyone on this site.
Jackson.
PS. Just for clarification Jackson and Jacko are two different contributors. Had I known about you Jacko at the time of registration I think I would have chosen another name to avoid confusion.Good luck.