Petition For More Research, Awareness, Training For Med School Students & Doctors For Chronic Pelvic Pain Frequently Caused By Pudendal Neuralgia/PNE

thank you for the video, it helped my family better understand PNE.

I am crippled with pelvic pain - have been since 1996 when I underwent hysterectomy - dismissed for years by doctors until the progressive nature of this problem has made it totally apparent. We need help. My life is basically a shambles from this problem and so are others to whom I have talked. Having seen dozens of doctors in the many years past it seems as if most of them don't even recognize pudendal neuralgia as a serious problem if they have even heard the term.

I am crippled with pelvic pain - have been since 1996 when I underwent hysterectomy - dismissed for years by doctors until the progressive nature of this problem has made it totally apparent. We need help. My life is basically a shambles from this problem and so are others to whom I have talked. Having seen dozens of doctors in the many years past it seems as if most of them don't even recognize pudendal neuralgia as a serious problem if they have even heard the term.

please do more research

please do more research

I have suffered from PN for 5 1/2 years. It has completely changed my life. Some days I wish I could die. I would not wish this upon the devil himself.

I have suffered from PN for 5 1/2 years. It has completely changed my life. Some days I wish I could die. I would not wish this upon the devil himself.

I have penile pain along with genital and calf pain. Had this for three years now.

I have penile pain along with genital and calf pain. Had this for three years now.

I am a nurse, and currently working with several patients with PNE. A whole new world of patients, and their struggles, has opened my eyes to a VERY much-needed area of medicine that is critically lacking information and available treatment options--leaving these patients with so much physical and emotional pain. These patients have their entire world turned upside down, from the lack of treatment, basically from the lack of knowledge from the medical community itself. Help for these patients cannot come soon enough!

I am a nurse, and currently working with several patients with PNE. A whole new world of patients, and their struggles, has opened my eyes to a VERY much-needed area of medicine that is critically lacking information and available treatment options--leaving these patients with so much physical and emotional pain. These patients have their entire world turned upside down, from the lack of treatment, basically from the lack of knowledge from the medical community itself. Help for these patients cannot come soon enough!

I have the same problem. Everyone thinks your crazy and cant help you !

I am having a hard time getting myself diagnosed because there are no doctors trained in this. Our Doctor's need training in Pudendal Nerve problems.

I am having a hard time getting myself diagnosed because there are no doctors trained in this. Our Doctor's need training in Pudendal Nerve problems.

I live in Houston Tx and had to advocate for myself and take control of my health. Going to pain management is a joke. More pelvic specialists are needed to get this disorder under control.

I have suffered PNE and the debilitating neuralgia for 7 years. I am awake now because the throbbing pain never stops. I am so uncomfortable. I had release surgery but it was done 5 years too late.I was forced to advocate for myself as no doctor believed me. I have never felt so hopeless in all of my life. Everyone deserves medical care with a measure of dignity. I was brushed off and left to die. I did not get proper pain control for 3 long years. Please help people with this excruciating neuralgia. Doctors must be educated about this life threatening condition. A person needs sleep to survive. Humans need to be able to sit. I pray for a miracle everyday.

Dear Sheila, as you can see i have only just joined this forum and have been so wanting to find out how many others there are 'out there' who are in the same boat. You mentioned that there is a supportive 'team' in Bristol UK. Please can you tell me if you have been operated on or are awaiting an Op and what treatment for pain relief you have been given in the meantime. I had a Hysterectomy via the vagina (therefore it was pulled out of me) rather than cutting across above the pubic line and have suffered from terribly pain (all the usual; burning inside the vagina, unable to sit, electric shocks in the vagina, having to wait ages to pass urine, often the feeling of being kicked between the legs by a horse, sciatica as a secondary from the PNE. With anti-mflamatory tablets and the medication Rivotril the pain is under control, BUT i realise that after such a long time with the pain the next step is to be operated on... can you tell me if you are being operated on through your bottom to try and release the nerve? I would like to know what you have been told and advised with regard to the recovery period. I live in France and have eventually by going privately, been advised by the Dr who invented the Op which relieves the pain, by cutting through the bottom to find the nerve.... I would like some feedback as I am aware that there is only a 70% chance of total pain relief, 29% of not making it better and 1 % of sadly making it worse. i really would appreciate some feedback. Many thanks. Fiona.

Juliette, please can you let me know what medication you have been prescribed to help your pain relief? I am taking RIVOTRIL which is 'apparently' due to be taken off the market. I would really like to know if Rivotril is used in other countries. Thanks Fiona

Hello. I have been suffering for just about 10 years. I am so sorry for everyone who has been experiencing terrible pain which is so difficult to discuss with friends and family. I can now see that male and female symptoms are probably similar. without the medication Rivotril which i have been taking I have the feeling as though a horse has kicked me between the legs and I cannot sit down for long etc etc.......... can you give me an idea of what pain treatment they have subscribed to you in the UK to relieve the pain and have you had any injections to see how long it takes for the pain to return. Has anyone suggested any other form of treatment. I have visited the Dr who invented the operation to release the entrapped nerve (Dr Roger Roberts in Nantes France) He says after 10 years it is probably my only chance to help relieve the pain. There are Hospitals in the UK who can perform the same operation who trained under him.

Lisa - 1st thing is to take yourself to a Gynacologist with the list of the pain and exactly where it is, how long you have had it and how many times you feel you have to take pain killers. Go to your Doctor and ask him to refer you to a Gynacologist and express that you are experiencing the pains related to Pudendal Nevef Entrapment and you require urgent assistance. I do not know what pain relief they use in the UK but in France I have been on a nerve pain relief medication called Rivotril which has helped me enormously although they are due to take it off the market in the next couple of years so that is why I have joined this forum to try and find out what they use in the UK. I have also had had several Injections to see try and ease the pain through the bottom...... you MUST get yourself to a Doctor who will get you to a Gynacologist and then onto a Specialist who deals with the problem. There is someone who can help you! There will be a list of Specialist you can easily find them on the internet and copy names out and take them to your Doctor asap. The name of the Proff who invented the release of the nerve causing the pain is Dr. Roger Roberts who works out of Nantes in France and he still operates - he is worldwide known. Good luck.