PNE

[babyredbear]

I have experienced this horrible PNE CONDITION for a long time now. Wished I would Have searched for help at the very beginning but I could deal with it with Lyrica. I now see a pain management doctor and the pills barely help. Has anyone had success with the decompression surgery after suffering from this for years?

[kalecolbe12]

I was wondering who diagnosed you and did you get a definitive t3 mrn(MRI of the nerves)and is the pudental nerve trapped or just irritated?Also do you have a combination of meds or just Lyrica? I know they are doing cryoablation of the Nerve now with some good results...seems like decompression surgery is hit and miss...works for some people and not others.I think there is a person on here called konagirl who may have had a successful result...also if you check on YouTube at pudental nerve decompression there are some testimonials of regular people who have had it done successfully.last have you looked on pudentalhope.com?that's a good site to get info

[kezj]

Hi

I had the surgery 15 months ago in France with Dr Beautrant, it wasn't the one in Nantes where they go through your buttocks it was less evasive. I had to stay in France for 2 weeks but I was only in hospital a few days and recovered in my hotel/apartment. I was in a really bad way before I had the operation, I am now a lot better but I will never go back to how I was years ago when I was 100% fit.

Dr Beautrant was fantastic and I went out to France before the operation and he did tests and it was all on my left hand side where it hurt when I sat down...well i physically couldn't sit down.

When he operated it took nearly 2 hours to untwist all my crushed nerves when it was only a 1 hour operation. In the uk before I went to France I had 3 injections and they made me ten times worse and then they left me with just tablets and lycria....I was at my wits end because I am only in my 40s and I was usually fit and healthy.

So dr Beautrant was a life saver for me and if I hadn't have gone I don't know where I would be now.

All the best to you.

Kez

[Hidden in reply to kezj]

Thank you for your posting.

It gives hope to us all.

Is it possible to say how much the operation was please?

Very best wishes for a continued recovery

Korin

[kezj in reply to Hidden]

Hi

I think it's a different price now as I claimed some of it off EHIC which is covered from the UK government when we were in the European union.

I just paid Dr Bautrant for the OP and the hospital stay was covered from my healthcare in the UK.

Kez

[Jenfer91 in reply to kezj]

Hi Kez, do you have the contact details? 😊

[PnJadi in reply to kezj]

That’s great to hear that you are feeling better. Did you experience any kind of trauma prior to you got PNE? What type of surgery did he do (I thought that Dr Beautrant operates through the buttock).

[kezj in reply to PnJadi]

Hi

I had moved house and it all started from that I think like a few on here that have got it through weight lifting.

I also had endometriosis laser treatment years ago so it could have been the scarring from that. Or from the birth of my daughter years ago.

He used to go through the buttocks but doesn't anymore, that's why I went for him and didn't go to Nantes. If you look on YouTube it shows Dr Beautrant doing the operation.

Kez

[PnJadi in reply to kezj]

OK thanks, just checked the procedure. I guess I am in the situation you were before the surgery. Fit and healthy who loves to workout. Had this for 1 year now and I am feeling terrible. Usually I can handle and correct sports injuries but this one is tough. I guess I am entrapped since I got it from an injury and all normal pelvic stretches put me into a huge setback.

What tests did you do to confirm that you were entrapped? (sorry for all the questions..)

[kezj in reply to PnJadi]

Hi

I even got to a point where I couldn't even put my left leg straight when I lay on my back which should have told the doctors in the uk that something was trapped and not just Pudendal neuralgia and if I sat down I had to put my feet up on a stool and sit on my right butt cheek. If I tried to sit it was like i was sat on a golf ball and i would have to jump up straight away.

I had the doppler test in France and where the blood flow should have been 24 it was at 9 on the left hand side which said the flow was broken and it was slightly broken on my right as well. So I still have

to be very careful especially when sitting I still sit on a cushion to protect the nerve.

Have you seen a specialist pelvic floor physio who knows about this condition? I still have to see one and see works on my internally once a month. I also do pelvic floor meditation which has taught me how to relax everything which is the best thing you can do to stop you tensing.

Kez

[PnJadi in reply to kezj]

Thanks.

I also have that problem when lying on my back. I need to use a very soft mattress otherwise my pain will increase (for me it is on the right side). And all kind of hip flexing movements such as walking stairs, sitting etc will cause me pain. The tricky thing is that some of the pelvic stretches I can do but the pain will start a couple of hours later. Was it the same for you?

There are no pelvic floor specialist where I live and all PTs and doctors I’ve been to so far have given me all kinds of diagnosis but noone knows about this nerve, so frustrating (had to find out by myself).

If I should try to be somewhat positive I so far ’only’ have perineum pain, no rectal or genital pain. Been in phone consultation with a Doctor in Belgium (Bollens) who found it very likely that I suffer from PNE based on my symptoms.

[kezj in reply to PnJadi]

Do you know what has caused your pain, did something trigger it?

Sorry you don't have any PT's who can help. Be careful with the stretching because you can make the nerve worse over stretching. A few months after my op I tried to cut my toe nails and because I overstretched it I was in pain for a few days until the nerve calmed down.

Have you tried any injections? A CT guided one? Or botox, Dr Bautrant does say he recommends the botox to relax things.

Kez

[Hidden in reply to kezj]

Hi Kez. I have been looking for a meditation CD for relaxing the pelvic floor. May I ask what is the name of the one that helps you?

Thank you,

Kat

[kezj in reply to Hidden]

Hi Kat

I go to this one on YouTube

youtu.be/4syPT8gMDDA(Not working as expected?)

I do it in bed not on the floor and my physio has said I was always breathing with my chest instead of my tummy so this has helped a lot. There are quite a few on you tube if you type in pelvic floor meditation.

I do it most days but you need to lock yourself away from everyone and get in the zone. I didn't think it would help me but it really has because I am not a meditation kind of person.

I hope it helps.

Kez

[kalecolbe12 in reply to kezj]

I'd he doesn't go through the buttocks where does he access the nerves?

[kezj in reply to kalecolbe12]

Hi

With female patients they do a small cut up inside vagina. The Male patient has a small cut inbetween the scrotum and the anus. Go to you tube and it shows you.

Kez

[kalecolbe12 in reply to kezj]

I would like to ask if they saw the nerve entrapment on a nerve MRI or how did they diagnose it to decide to do surgery?

[kezj in reply to kalecolbe12]

I went to France and did a doppler ultrasound scan which they can tell if the blood is flowing as it should do at the side of the nerve. Mine was crushed because the blood flow on the left should have been 24 and it was only 9 on the test.

Kez

[AuntieH in reply to kezj]

That's great to hear kez, where are you located?

[kezj in reply to AuntieH]

Hi

I live in Manchester, UK

Kez

[1980natty in reply to kezj]

Hi Alex, I too had surgery with dr Bautrant, would you like to chat some time?

[Konagirl60]

I have. No nerve block helped and meds were useless or gave me terrible side effects. I had a true entrapment.

[susieqblue]

I had my 1st appt on Feb 25. I am scheduled for 6 PN injections once a week for 6 weeks. I will be admitted into the hospital and being put to sleep every friday afternoon. On the 6th round he will also do Endometriosis surgery. I had that done 2 years ago and it was bad back then. I would be happy to keep everyone posted because I have suffered now for 6 years. The last 7 months its gotten really bad for some reason. I had a MRI with and without contrast which he will review along with an interventional radiologist. I have seen a vascular dr and a general surgeon thinking I had a groin hernia. Mine is all right side severe groin pain right where your panties go around your leg and pain in my butt when sitting at work and sciatic nerve pain front and rear of my right leg. He specializes in pelvic pain and he a obgyn.