Petition For More Research, Awareness, Training For Med School Students & Doctors For Chronic Pelvic Pain Frequently Caused By Pudendal Neuralgia/PNE
94 Comments
F
Fiona MacGregor
11 years ago
I was informed that PNE Pudendal Nerf Entrapment was rare when I was diagnosed following an Hysterectomy Operation in France. Yes this is the most horrid and traumatic, disabiliating occurance. I have been suffering for nearly 10 years and I have much sympathy with those who are also in great pain. I am signing this petition for more awareness and training so that the signs can be picked up quickly and treatment can be made sooner rather than later. It is a very sensitive subject to talk about and for others' to understand. I am now considering an operation in Nantes to try to release the entrapment. I need more information on the recovery period and possible side affects as my pain has been caused by post operative work.
L
Lisa Murphree
12 years ago
I have PNE although I have never been officially diagnosed with it. I cannot seem to find a doctor who knows anything about this. Please help me and others who suffer from this. The pain is excruciating.
J
Juliette Aiyana
12 years ago
Took 5 years of doctors visits until I was correctly diagnosed.
M
Mark
12 years ago
Im a male suffering from PNE going on 3 years. It took lots of appts, multiple doctors, and finally got correctly diagnosed 7 months ago. This condition has impacted my life in so many ways. I continue to hope for awareness and a cure. It is amazing how many people have this and for some reason the docs always default to Epididymitis or Prostatitis. Once that doesn't work they will tell you it is in your head and to stop thinking about it. I would love to kick the male doc down there and then just say don't think about it. That is how my pain goes everyday as if I were kicked down there and heavy dull ache.
Hoping our awareness gets more attention.
Thanks.
R
Reiner Pohl
12 years ago
Wonderful commentary on a condition I'm experiencing that may be PNE
C
Charles Stebbins
12 years ago
This is a horrible debilitating condition. It has impacted my life greatly. I would appreciate any and all you can do to devote more time and resources to finding something that could relieve the suffering of Pudendal Neuralgia patients like myself. Education is key.
I
Ilda avelar
12 years ago
My husband has it it's the worst Paine ever we live in Canada and from I no ther is no Sergei hear it's going on 4years now and no end in site
H
Hayley White
12 years ago
Featured
No one in the NHS seems to have a clue about this. It's awful enough to be putting up with the symptoms of PN without feeling like every medical professional looks at you as if you are nuts. It's not even that complicated.
L
Lorien Ray
12 years ago
Shawn thank you for sharing your vast knowledge and experience. You have shared your own personal experiences for the good of us all, that suffer in silence and as you clearly expressed the lack of understanding from family, friends and in my case my own family doctor. Thank you once again.
P.S. It would be nice if we could get one of these leading doctors to give lectures with a few of us sharing our story. Canada
A
Anonymous
12 years ago
Please we need more research
K
Kathy Biggs-Foxworth
12 years ago
I have suffered for 14 yrs, I self diagnosed 12yrs ago. Dr's are either unaware or not interested. PN/PNE has stolen my life and my family's dreams have been shattered. It is too late for me but I hold out hope to others.PN pain is cruel and unrelentless.If I were an animal I would have been mercifully euthanized. Please spread the word for others sake. I know there are many more of us out there.We need courageous Dr's who are pioneers, please step up. Thank you and God bless!
A
Anonymous
12 years ago
more awareness needed for doctors to reconise pudendal neuralgia /pelvic pain
S
sheila Jacques
14 years ago
Having suffered 12 months of debilitating pain that has taken me from an active life as a carer, to suffering at home with pudendal nerve entrapment, now catheterised unable to pass urine myself and having difficulty with bowels. Totally unable to sit,I am now awaiting surgery in Bristol UK. I would really like to raise the awareness of this awful condition and cannot praise the team enough here who are offering support. I therefore lend my name to this petition and hope it helps others on this journey and difficult decision for the relatively new surgical approach.
A
Anonymous
14 years ago
Featured
Most doctors have never heard of it, please educate them! So many sufferers undiagnosed or misdiagnosed and told to 'live with the pain'. In this day and age should we live a life of disability when they are treatment options available, our doctors just don't know of them?
I was informed that PNE Pudendal Nerf Entrapment was rare when I was diagnosed following an Hysterectomy Operation in France. Yes this is the most horrid and traumatic, disabiliating occurance. I have been suffering for nearly 10 years and I have much sympathy with those who are also in great pain. I am signing this petition for more awareness and training so that the signs can be picked up quickly and treatment can be made sooner rather than later. It is a very sensitive subject to talk about and for others' to understand. I am now considering an operation in Nantes to try to release the entrapment. I need more information on the recovery period and possible side affects as my pain has been caused by post operative work.
I have PNE although I have never been officially diagnosed with it. I cannot seem to find a doctor who knows anything about this. Please help me and others who suffer from this. The pain is excruciating.
Took 5 years of doctors visits until I was correctly diagnosed.
Im a male suffering from PNE going on 3 years. It took lots of appts, multiple doctors, and finally got correctly diagnosed 7 months ago. This condition has impacted my life in so many ways. I continue to hope for awareness and a cure. It is amazing how many people have this and for some reason the docs always default to Epididymitis or Prostatitis. Once that doesn't work they will tell you it is in your head and to stop thinking about it. I would love to kick the male doc down there and then just say don't think about it. That is how my pain goes everyday as if I were kicked down there and heavy dull ache. Hoping our awareness gets more attention. Thanks.
Wonderful commentary on a condition I'm experiencing that may be PNE
This is a horrible debilitating condition. It has impacted my life greatly. I would appreciate any and all you can do to devote more time and resources to finding something that could relieve the suffering of Pudendal Neuralgia patients like myself. Education is key.
My husband has it it's the worst Paine ever we live in Canada and from I no ther is no Sergei hear it's going on 4years now and no end in site
No one in the NHS seems to have a clue about this. It's awful enough to be putting up with the symptoms of PN without feeling like every medical professional looks at you as if you are nuts. It's not even that complicated.
Shawn thank you for sharing your vast knowledge and experience. You have shared your own personal experiences for the good of us all, that suffer in silence and as you clearly expressed the lack of understanding from family, friends and in my case my own family doctor. Thank you once again. P.S. It would be nice if we could get one of these leading doctors to give lectures with a few of us sharing our story. Canada
Please we need more research
I have suffered for 14 yrs, I self diagnosed 12yrs ago. Dr's are either unaware or not interested. PN/PNE has stolen my life and my family's dreams have been shattered. It is too late for me but I hold out hope to others.PN pain is cruel and unrelentless.If I were an animal I would have been mercifully euthanized. Please spread the word for others sake. I know there are many more of us out there.We need courageous Dr's who are pioneers, please step up. Thank you and God bless!
more awareness needed for doctors to reconise pudendal neuralgia /pelvic pain
Having suffered 12 months of debilitating pain that has taken me from an active life as a carer, to suffering at home with pudendal nerve entrapment, now catheterised unable to pass urine myself and having difficulty with bowels. Totally unable to sit,I am now awaiting surgery in Bristol UK. I would really like to raise the awareness of this awful condition and cannot praise the team enough here who are offering support. I therefore lend my name to this petition and hope it helps others on this journey and difficult decision for the relatively new surgical approach.
Most doctors have never heard of it, please educate them! So many sufferers undiagnosed or misdiagnosed and told to 'live with the pain'. In this day and age should we live a life of disability when they are treatment options available, our doctors just don't know of them?