Health Organization for Pudendal Education

Hi, I’m new to the group and I wondered if anyone here could offer me some advise?

I have suffered with pudenal nerve entrapment for 4 years after giving birth to my daughter, for the 1st 3 years I was managing mild symptoms which were diagnosed as vulvadynia, in the 3rd year my symptoms became extreme I didn’t realise pain like this existed, I suddenly couldn’t sit, stand, walk or even lay on my back the pain was so bad I had a nervous breakdown. I managed to get an appointment for a pudenal nerve block which took the edge off, after my nerve blocks and many many sessions of physio I was able to start walking without pain but standing still was still excruciating, I couldn’t wear anything but 100% cotton otherwise it would set off another unbearable flare and began my search for a proper diagnosis in France.

I went to visit dr Bautrant who confirmed I had severe nerve entrapment on the right and we scheduled surgery for the following month, the surgery went well and immediately after the pulling tugging sensation was gone, of course I went home and rested and over the coming weeks I was able to start walking very short distances again and even sit for a few minutes here and there...the pain on a whole is far less than it was before surgery as in I don’t get intense flares anymore.... I started cooking meals again and felt more comfortable standing for longer periods ...

My worry is I feel like I’m going backwards, I’m in agony when I stand again and walking is becoming harder, I haven’t done anything to agrivate thjgs I’ve been taking it easy, I’m just very concerned. I have tried to write to France but I never get a reply. The sensitivity of the whole vagina is on the rise ... is this normal?

The numbness of the surgery has subsided somewhat so I guess this is a good thing but I’m overall I feel like I’ve just come out of surgery pain wise... I literally feel like the operation was just a couple of weeks ago, it’s a real rollercoaster and I expected it I just didn’t expect the progress I was making to take a u turn.

Any feedback of your experiences would be greatly appreciated.

Natalie x

Hello Natty,
My name is Billy from Thailand. My condition is like yours. I cant walk cant sit and cant lie down without deep ache pain. I take sleeping pills and gabapentin everyday to control my pain. It doesnt take away all the pain but its manageable. Everytime i take deep breath i feel more pain. Im traveling to Belgium to get a laparoscopic surgery with Dr Renauld Bollens. It will be a very long painful flight but I dont have anything to lose. Its my only chance to get my life back. Whatever the outcome is at least i went for it.
I read about your condition after post operation. I believe that that the nerves could be reentrapped or the nerves are too damaged to be treated. Do u take any painkillers to control the pain? Gabapentin helps alot. I take 1800 mg first thing in the morning. Most of the day i stay at home lying down on my bed hoping it will get better. Sometimes i feel like i been striked by an axe at my groin area if i dont take gabapentin. I have suicidal ideations all the time. I hope that the lockdown will be over very soon. You didnt mention when did u get the surgery in France. Sometimes it takes 3 years to see results but improvement of the symptoms should be seen every 3 months.

Hi Billy,

Firstly I’d like to say that I’m truly sorry you are suffering I know how you fee, I’m glad that you can take a medication that helps unfortunately I’m unable to take medication as I react badly to all the nerve drugs and I’ve had to suffer this without the help of drugs... dr Bautrant explained to me that the nerve couldn’t get re entrapped and he seemed pretty positive that I would have a speedy recovery he didn’t mention too much nerve damage, I have started to feel a lessening of pain pain again compared to when I wrote the last post but at 4 months post surgery I thought I’d be doing better than I am only because I was more mobile after 8-10 weeks, I’ve heard the pains can get worse before they get better and I really hope this is the case, it was only 3 weeks ago I was able to put on a pair of jeans again for the first time in over 3 years but sadly I think the nerve has woken up again and I’m back to baggy clothes. If only de Bautrant would reply to my emails and explain what I’m experiencing in normal that would really help, please keep me updated on your surgery. I pray that your surgery goes well! This condition is just horrific.

I’ll let you now if at the 6 month mark I’m feeling any better, if not a re visit to France May be in order.

Good luck!

So how's the recovery been going?

Nattygracey1980 wrote:Hi Billy,

Firstly I’d like to say that I’m truly sorry you are suffering I know how you fee, I’m glad that you can take a medication that helps unfortunately I’m unable to take medication as I react badly to all the nerve drugs and I’ve had to suffer this without the help of drugs... dr Bautrant explained to me that the nerve couldn’t get re entrapped and he seemed pretty positive that I would have a speedy recovery he didn’t mention too much nerve damage, I have started to feel a lessening of pain pain again compared to when I wrote the last post but at 4 months post surgery I thought I’d be doing better than I am only because I was more mobile after 8-10 weeks, I’ve heard the pains can get worse before they get better and I really hope this is the case, it was only 3 weeks ago I was able to put on a pair of jeans again for the first time in over 3 years but sadly I think the nerve has woken up again and I’m back to baggy clothes. If only de Bautrant would reply to my emails and explain what I’m experiencing in normal that would really help, please keep me updated on your surgery. I pray that your surgery goes well! This condition is just horrific.

I’ll let you now if at the 6 month mark I’m feeling any better, if not a re visit to France May be in order.

Good luck!

I'm sorry to hear you story, How are you doing now? Do you feel better?