New Person with Pudendal Nerve Disorder

[Violet M]

Well, Kone, I guess that makes it a little tough deciding what to do next. I wonder if a nerve compression would show up on an MRI. I can't remember reading any reports that mentioned nerve compression -- or how she would even check for those.

Violet

[helenlegs 11]

The thing with imaging is that for typical nerve problems it is still in it's infancy. One on the phrases used in medical diagnostic terms seems to be, ' The absence of abnormal findings does not mean that there are no abnormal physical components, but simply that the tests (in your case and I think especially imaging) used did not detect any''
Not helpful for you unfortunately but worth bearing in mind.
Onwards??
Take care,
Helen

[konedog4]

Is there a category on this board for those who have had successes in dealing with a PN diagnosis - actually recovering and leading a normal life again? If so, could someone direct me to it?

I continue to have a return of all my symptoms. I don't know for sure what set me back. Perhaps it was the mild barbell training I started in June. Whatever the case, I am back to the very beginning again, with pain upon sitting, rectal tingling, and pain standing in one place. It is certainly discouraging having seemed to get much better, and now back at square one.

kone

[Violet M]

Kone,

I'm sorry about your setback. There is a section for success stories -- http://www.pudendalhope.info/forum/viewforum.php?f=74 although a few of the people who claim success still seem to be having some problems. Most of the success stories I know of have moved on with their lives and don't come here anymore. If your strategy is to get well by changing your lifestyle it may require a permanent change in lifestyle, especially if your PN is related to some sort of structural problem.

Violet

[konedog4]

I appreciate your post Violet. I like to read how others got better in the hope I can learn something from what they did.

I have made quite a few lifestyle changes after my setback. No more running, now I only walk. I also don't lift anything where I feel internal pressure. I always sit on cushions and I limit sitting to only at work and not at home. My life has really changed. I cannot do too many of the things I used to enjoy doing. So I am finding other things to do, but when one cannot sit, it does crimp one's lifestyle.

I am being seen by several specialists - a hernia specialist and a pelvic floor specialist, just to get a different set of eyes on my condition. If they do not help, I will do the shockwave therapy in Canada this year yet. Only as a last resort am I considering surgery, mostly because it has such a bad track record. I want to try every other therapy first before even considering surgery.

I appreciate your helpful posts Violet.

God bless you.

Jim

[Violet M]

Jim, I completely understand your reluctance to have surgery. I see it as a last resort too because it is irreversible but I also see it as an option to keep on the table if you have severe pain and nothing else works. Hope the other treatments work for you. Sending some prayers your way.

Best,

Violet

[blightcp]

Welcome,

The only thing i can say is that Dr. Antolak was the person my suregon ,Dr. Conway, encouraged me to see if i wanted a second informed opinion. It was the first time anyone medical was confident enough in what they saw to personally get me sent to another specialsit who had the knowlege to help.

I've read a bit of his research and hee seems to be realy focused on PN issues.

Apparently there are one or two confrences a year for PN surgeons and most of these guys globally meet up, and discuss research. This is despratley needed to raise awarenes overall in the medical comunity. Most of these guys know each other personally, if they don't, that would be a red flag for me.

[konedog4]

I am seeking second and third opinions on my condition. I am so far getting no good answers despite two different MRI's. I had one doctor tell me I don't have pudendal nerve disorder, saying it is "overdiagnosed" by doctors who cannot readily explain why symptoms are occurring. Then I have Dr. Antolak telling me that I definitely have Pudendal Nerve Disorder. So I will exhaust my referral sources and have as many eyes look at my problem as possible. I think what it comes down to is that there is no definitive test for PN. It is a diagnosis of exclusion when no other conditions can account for the symptomology. I wrote a letter to Dr. Conway and he did not have the courtesy to respond, so I am sending another.

kone

[blightcp]

Dr. Conway is insanely bussy all the time. I would call his office and try to make an appointment. They will most likley ask for all of your contact information. The first responce from him was 2 weeks later on a sunday afternoon on my cell phone. He is an OBGYN and babies can really mess up his schedule.

I live 20 min away and a appointment for a non-critical issue would be 6-8 weeks.

[konedog4]

What can you tell me about Dr. Conway in terms of his surgical approach and success? I believe he started out using the TIR approach, but then also learned the TG approach. Did you have surgery with him? How did you fare in terms of results, recovery time, etc.?

Thanks,

Kone