Hereditary?
Hereditary?
I've been out of the loop for some time now. Back when I was researching 10 years ago, pudendal neuropathy was not thought to be hereditary. Now I'm seeing some postings on different websites that doctors are telling patients that it could be hereditary. Recently through Facebook I found my biological half-sister and I want to make her aware if this is an issue. If this is just a misconception or a rare belief held by some doctors, I don't want to come off as a crazy person and tell her about this.
Pain began 2007, surgery 2008 - Dr. Ansell in Houston, TX, severely damaged nerves on both sides and entrapment areas
No relief from surgery, possible PN years before pain began
PN most likely due to extreme exercise
Tried:
SCS - 95% pain relief, removed due to multiple infections
Accupuncture - no relief
Botox - relief only 2 of 3 months of injection
RF Ablation - no relief
Current: Butrans Transdermal patches, compound cream, other usual PN meds
Pain relief typically 60-70% with new meds
No relief from surgery, possible PN years before pain began
PN most likely due to extreme exercise
Tried:
SCS - 95% pain relief, removed due to multiple infections
Accupuncture - no relief
Botox - relief only 2 of 3 months of injection
RF Ablation - no relief
Current: Butrans Transdermal patches, compound cream, other usual PN meds
Pain relief typically 60-70% with new meds
Re: Hereditary?
I don't know if there has ever been a study on whether PN is hereditary but when I was in France for surgery Dr. Bautrant told me that he has seen it run in families. That is what I have observed in my own family with my mother and possibly my great-grandmother having it. I don't know exactly what my great-grandmother's issues were but the story is that she had "female" problems. Of course we know now the PN isn't just a female thing but back then it might have been considered that.
I'm not sure why it might run in families -- it could be because of a certain type of musculoskeletal build or maybe something that has to do with the genetics of the nervous system. I read an article a few years back on research showing that people with pain syndromes could have a genetic makeup of the myelin sheath that leads them to feel pain more easily. So, maybe it's a combination of factors that contribute to PN running is some families. But it doesn't run in every family or in every member of a family -- so I don't think everyone who has someone with PN in their family needs to be concerned that they are going to have it too. What I have told my kids is to just be careful and if they start having pain due to exercise, which is how it started with me, to back off and don't continue with something that is painful.
Violet
I'm not sure why it might run in families -- it could be because of a certain type of musculoskeletal build or maybe something that has to do with the genetics of the nervous system. I read an article a few years back on research showing that people with pain syndromes could have a genetic makeup of the myelin sheath that leads them to feel pain more easily. So, maybe it's a combination of factors that contribute to PN running is some families. But it doesn't run in every family or in every member of a family -- so I don't think everyone who has someone with PN in their family needs to be concerned that they are going to have it too. What I have told my kids is to just be careful and if they start having pain due to exercise, which is how it started with me, to back off and don't continue with something that is painful.
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: Hereditary?
Thank you, Violet. I have a niece that does weight lifting and I'm constantly warning her to stop if she feels any pain. My mother and my sister have also had pain issues but they weren't pudendal. I read that too about the bone structure of the pelvis causing PN.
Pain began 2007, surgery 2008 - Dr. Ansell in Houston, TX, severely damaged nerves on both sides and entrapment areas
No relief from surgery, possible PN years before pain began
PN most likely due to extreme exercise
Tried:
SCS - 95% pain relief, removed due to multiple infections
Accupuncture - no relief
Botox - relief only 2 of 3 months of injection
RF Ablation - no relief
Current: Butrans Transdermal patches, compound cream, other usual PN meds
Pain relief typically 60-70% with new meds
No relief from surgery, possible PN years before pain began
PN most likely due to extreme exercise
Tried:
SCS - 95% pain relief, removed due to multiple infections
Accupuncture - no relief
Botox - relief only 2 of 3 months of injection
RF Ablation - no relief
Current: Butrans Transdermal patches, compound cream, other usual PN meds
Pain relief typically 60-70% with new meds
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JeniferWilliams
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Re: Hereditary?
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