I'm posting this for Donna, who's on the Facebook page Pudendal Neuralgia Hope. She is extremely desperate and is not getting any help from her doctor. I watched her YouTube video and it's absolutely heartbreaking and unbelievably sad how she's being treated by her doctor. She has asked for everyone to share her story and video, in the hopes that she can find someone to help her.
Here is the link to the video. Please let me know if it does not open. I'm not very techy so I just copied the link.
https://m.youtube.com/watch?v=XBS8dNOxQ ... =mv-google
Please watch her video, and share with everyone you can.
Help For Donna
Help For Donna
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: Help For Donna
Hi J,
Do you know where this woman lives? It sounds like she is being treated primarily by a pain management doctor but I can't tell for sure what all she has tried. Do you know anything about who her doctors are or who she has been to see already? I couldn't tell much about her history, etc. from the video. The treatment path that you follow depends to some extent on what your history is. So, I don't really have enough info from the video to make an educated suggestion on what she might do but I do understand how she feels, having been through the experience myself. There are doctors who just don't get it and when that happens, you just have to look elsewhere for treatment from a provider who truly understands your condition and recommends treatments that make sense to you and your situation. It's sad she is not getting the treatment she would like, but physicians tend to treat patients based on what their training and experience is. If your physician doesn't have those skills, you have to look elsewhere.
Violet
Do you know where this woman lives? It sounds like she is being treated primarily by a pain management doctor but I can't tell for sure what all she has tried. Do you know anything about who her doctors are or who she has been to see already? I couldn't tell much about her history, etc. from the video. The treatment path that you follow depends to some extent on what your history is. So, I don't really have enough info from the video to make an educated suggestion on what she might do but I do understand how she feels, having been through the experience myself. There are doctors who just don't get it and when that happens, you just have to look elsewhere for treatment from a provider who truly understands your condition and recommends treatments that make sense to you and your situation. It's sad she is not getting the treatment she would like, but physicians tend to treat patients based on what their training and experience is. If your physician doesn't have those skills, you have to look elsewhere.
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: Help For Donna
She lives in Cleveland Ohio. Sounds like she's getting the runaround from the doctors there because they don't think anything is wrong with. Clearly there is. May I suggest to her that she get on this forum and maybe get some advice from you? She's very desperate.
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: Help For Donna
Sure, that would be fine. Or she can contact me through our contact form on the website. http://www.pudendalhope.info/contact
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.