Health Organization for Pudendal Education

Hello, has any of you been treated by the professor Roger Robert? Or do you know anyone who's been treated by him? I desperately need you to share your experiences with me!
Thanks in advance.

hello Hope,

There are several people who write on the forum who have been there, Greg T, Stephanie P and Amanda come to mind. If they don't see this send them a PM.

Jeanie

I'm joining too, to know more about Dr. Robert.
Thanks a lot,
Francesca

no, but I've seen Dr. Eric Bautrant who is in France who studied under him and revised the surgery to avoid cutting through the sacrotuberous ligament. If you are curious, I can tell you more about him.

Yes of course! if you can...
you didn't have improvments after bautrant's surgery, didn't you?
By the way, I read that you had botox, where, in france?
Did you have any good results?
I'm going to have botox and I'm also wondering if it hurts and if you can drive after the procedure.

Hi Ali,

Just to say that I have the highest regard for Professor Robert and his team. It's true that I am still in a lot of pain, but that is not Robert's fault. At the time of surgery my nerve was found to completely flattened on both sides and adhering to everything surrounding it, including inside Alcock's Canal, with all branches affected. Surgical success was always going to be a gamble, and I'm not sorry I went for it. Another person from NZ has also had surgery in Nantes with great results. In the end, success largely comes down to the the duration of entrapment, the state of the nerve, and the age of the patient. As you point out, such is the dilemma of PNE! I should also say that I've had absolutely no problems with having had my ligaments cut. Furthermore, Professor Robert has been reassuring and helpful from a distance, when I've needed advice, despite the considerable demands made on his time as a neurosurgical professor.

All the best, Stephanie

Dear Stephanie,
It is very kind and generous of you to keep Professor Robert in the highest regard,but the results matter in the end to the patient.Patients develop SIJD,Piriformis muscle syndrome,tailbone pain etc in addition to the Neuropathic pain.It has been going on for the last 20 years now since Robert came up with the surgical technique and Shafik pointed out the symptoms of PNE.The patients don't need sporadic successes as you mentioned regarding the other Kiwi,but continuous surgical success outcomes with no additional pains and disorders as mentioned above.
The nerve damage is understandable,however peripherial nerves do regenerate but not all all the 70-80% patients who slightly improve,remain the same or even get worse with no change in their conditon have nerve damage.We have seen that the patients didn't improve even though their nerves weren't damaged.Some of them are being found to be entrapped in scar tissue with their ligaments severed which has left the patients with Pelvic instability.Who knows maybe you did develop scar tissue and your nerve was re-entrapped or maybe the awful pain that you are in could be the result of those missing ligments.

There is a flaw in the PNE surgery and the time has come for the PNE surgery to be drastically evolved.Enough is enough.

Kind Regards,
Ali

Hello,



My name is Raquel, and I’m from Portugal.


My problems started in November 2009, when I discovered I had a lesion in my womb, stage 3, a consequence of HPV. My doctor removed it successfully.

After some time, I was having some problems with anal bleeding, hemorrhoids, etc and I consulted a proctologist. He told me I had anal condilomas (which sounded very strange to me, since I was not an anal sex practitioner). I decided to ask a friend for help and she introduced me to some doctors she knew. I had a colonoscopy done and the result was clear: no anal condilomas, just some discrete internal hemorrhoids.

The doctor told me that I had a contracture on the anal sphincter and he could easily solve it with a simple intervention (anal sphincterectomy). He never told me about the risks/consequences... he just told me that after having the surgery I would never feel the discomfort anymore.

I got the sphincterectomy done (September 2009) and I never felt the same again. Immediately after the surgery I started feeling a strange numbness in all the perianal area. Sometimes I felt a slight pain in the vagina irradiating to my legs. During the brief sexual intercourses I had during the following year (2010), I didn't feel anything strange or unusual, except some horrible pain once or twice.

In January of this year I met my partner with whom I started having regular sexual activity. I didn't notice anything unusual but in the beginning of March I started noticing that something wasn't right. I had a urinary infection and I noticed I couldn’t feel the vaginal channel, perineum and, even being able to feel my clitoris, it sometimes has a strange numbness and cold sensation. If I prick the vulva and vaginal channel with a sharp object I don't feeling anything. For the past 2 months it has gotten worse and it progressed to the whole clitoral and vulva area. The numbness is getting worse. I also feel pain on my bowel, constipation and loss of sensibility in the rectum and anus.


The surgeon has assured me it is impossible that this situation is a result of the surgery. I've done a CAT (of the spinal termination) and a MRI. Two neurosurgeons say nothing significant shows in the scan, but the report says something like this:



“ Right lateral posterior protrusion of the L5 – S1 that seems to migrate down slightly. It diverts against the compact articular from the S1 root on that side and fills the inferior portion on the right conjugation channel in which conditions the erasement of the periradicular grease in relation with the L5 root path. Sacred-loin vertebra probably in transition.”



I also refer that I have a 7 year old son, who was born by natural delivery, and a direct fall on the tailbone, 4 months ago.

Everyone says they can't help me; they have never heard of a case like this. They also say that some women feel this numbness too, without any explanation. One doctor told me: "Look, I've noticed that this is important for you, for some people it isn't, but I can't help you." Doctors also say this is psychological, but it makes no sense.



I have read about Pudendal Neuralgia. I think the symptoms fit my case and I had at least 3 episodes that could originate this: childbirth, direct fall on the tailbone and esphincterectomy.

This is very disconcerting, as you can imagine.

Is there anything you can suggest (exams, tests), for me? Have you heard of any case similar to mine? In Portugal doctors don’t even know what an electromyography is. One of them told me: “- Only two specialists in Portugal know how to do it.”



I am available to travel.



Hope to hear from you soon. Thank you in advance.



Yours truly




Raquel Silva



P.s. There are some mistakes in this letter, but English is not my native language.

The cause of your numbness could be any one of those events you mentioned although the operation and onset of your symptoms seem the more likely. However, the main thing now is to find any area of entrapment and see how best to deal with it.
I don't understand your MRI scan (sorry, not medical) but then this imaging would only show spinal/disc problems anyway. Nerves can not be seen. The feed back from your Doctors, having examined the scan, seems to be that there is nothing showing that is symtomatic to your condition if they are unable to treat you.
I think it is only cauda equina syndrome that gives 'saddle-anethsesia' if the problem origionated from the lower spine and you don't have that because it would give you so many more dreadful symptoms so the next thing to rule out would be PN. ( I know that and I'm not medical ! !)
If travelling and finance is not a problem my advice would be to get a Hollis Potter pelvic scan in New York. Many people on this forum have had unbelievably detailed reports from her. Her findings have then often been shown to be correct during subsequent surgery for PN. (often as in some haven't had surgery so no details are known)
There are doctors in Europe who specialise in PN diagnosis and treatment too. Take a look at the home page. You will also find different treatments there too.
Your English is excellent, you should hear my Portuguese.
Hope this is helpful, this forum will definitely be, so glad that you found it.
Helen