I'm new, need a little friendly advice.

[Violet M]

Hi Lanny,

You are an amazing person to be so positive after all you have been through. It's really an honor to be talking with someone who has been so brave.

The thing about PNE surgery is that you don't know for sure whether it's going to help until you try it, and even then the recovery is quite slow, as you may have already read. Your doctors need to be very certain that you have a diagnosis of nerve entrapment going in. I guess it's really an individual decision on whether you want to try surgery or stay with conservative therapies that may mask the pain but not fix the underlying problems. For me, surgery gave me back a life and I have other friends who say the same thing, but I also know people who didn't get better from surgery. You just have to go into it with your eyes wide open and be prepared mentally for a possibly unsuccessful outcome. I wish I could give you better information but there aren't easy answers. I hope you will find a solution that works for you and gives you a better quality of life.

Take care,

Violet

[Lanny C]

Hi Violet,

Thank you so much for talking to me I have read a lot of your posts so thank you for helping me do some more homework like Janet suggest I do which I did do today thanks to the both of you. You are very kind to call me brave I just think of myself as tolerant but it means a lot to hear that from you.

I really want to go back to UCL and get a firm diagnosis on whether the nerve is entrap he wasnt very sure all he was confident about was the pelvic floor dysfunction and the obturator internus on both sides were effected, which is why he did what he did but there was talk about zapping the pudendal nerve and he did say it was getting pintched but he wanted to see me again. so until I do I dont know if it is just getting hurt in the cross fires or is it entrapped.

I will keep you all updated on whats happening here but you have all already done a huge amount to settle my nerves.

Thank you.

Lanny C xx

[janetm2]

Lnny,
Glad to help and good to hear you in fine spirits despite the pains. I hope you can get a more definitive answer at your next appointment. I had a tough weekend but am feeling better and looking forward to a vist with my sister in law and nephew. A vacation finally will be fun. We struggle so with this condition and I hope you will get to this end where things are better. I look forward to hearing your progress.
Janet

[Lanny C]

Hi Ladies,

I just wanted to ask you one more thing that is still troubling although you have all done amazing things to help me. I dont know if you know someone younger then me to be told they have something akin to Pudendal nerve damage or pain in that area, but because of this I was told my leading OBGYN's and my doctors that a natural birth would not be a good idea because it could do a lot my damage and I've seen on here that one of the main causes of PNE or PN is because of a vaginal delivery. No I dont want to go up against my doctors I respect them too much and they have done a lot for me especially my OBGYN but it does make me sad that I'll need a C-section and because of my other health issues I'm about to ask for a Spinal Cord Stimulator (which I know will help my pain in the pudendal nerve area) but if I have it I'll have to have a general anaesthetic to have my children which is not ideal.

So since you have all helped me with my other worries I was wondering if you know anything to help me in this department.

Lanny C x

P.S. I promise I wont keep asking questions

[Anne smith]

Hi lanny I am also under Andrew baranofski! And I have had the injections two months apart with flares but no improvement! I believe and I think many on this site would agree that they are more diagnostic than anything else(that is in my opinion)
I have continued to suffer on! And like your self had the mention of a neuro stimulator ! I don't know how bad you would have to be together this piece of aquipment! But I suffer on ! Wondering what or how bad do I have to be for dr baranofski do deem me a candidate!
Good luck with all
Anne

[Lanny C]

Hi Anne and Ladies

It's really good to hear from you Anne a fellow Baranozki patient he is a very impressive man as is the whole team. I found that the injections did help but there was overwhelming evidence that my obturtor inturnus on both sides were in need of relief. But since then the flare ups deep in the vagina, clitrous and rectum have become so much worse now it's almost unbearable so I really need to see him and ask what else can he do for me because its very painful and I'm really struggling. I hope there is more to do like a nerve block or something else. I hope he can help you too I really do.


Thank you for finding me. Keep in touch.

Lanny x

[Violet M]

Lanny, yes there are people younger than you (children) who have been diagnosed with pudendal neuralgia. Very sad indeed.

Whether to go for a c-section or vaginal delivery is really an individual choice as there are differing opinions on it. Most of the women I've known of who had pregnancies with PNE opted for a c-section but there's a gal who posted in this thread who opted for a natural birth. http://www.pudendalhope.info/forum/view ... f=2&t=4948

Violet

[soula]

Hello everyone,
I'll share my story, not to confuse but rather as another experience with PN as it's true we all have our own journey with this awful issue.
My issue started when a fitball I was sitting on burst and I fell to concrete. I'll try and keep the 6.5 years short but my treatment has gone like this:
Removal of incredibly inflamed pelvic ligament (and high sensitivity went with it thankgoodness as I felt like I had my finger stuck in a powerpoint all day), then implant of a peripheral stimulation device (that gave me my senses back), then diagnosis at the 4.5 year mark (hallelujah!). After this, acupressure points to relieve (yes, completely) relieve the pain that I practised throughout the day, then nerve blocks (and on Nerve block no 2 hit the nail on the head by injecting the rectal branch), added a teeny dose of Endep (and I mean I split the 10mg tablet so that I don't get the depressing side effects), and now over the last 8 months Traditional Chinese Medicine with a very gifted man who does acupuncture, provides herbs and (I know this will sound simple) but cooling patches. The cooling patches to me show how much of the glacier I've chipped. To be reacting to these means I'm really peeling the hellish onion layers. But I have to point out throughout this process I have 24/7 help by my husband. I don't lift or do anything that triggers my pain. I sit on a black zip folio envelope http://www.pudendalnerve.com.au/2012/11 ... f-you-can/ that I made and I installed a bidet and sit backwards on it running cold water over my buttocks whenever in a flare. Having said that, I haven't had a flare now for about 4 months and I have returned to a little work. But we do work from home so that's helped incredibly.
AND, I hardly turn my stimulation device on.
I'm beginning to gather a theory, and it's difficult to do with this everchanging monster, but I believe inflamation inside my pelvis goes together with 'heat'. They seem to be a team and one brings on another. The heat/inflamation comes with any pressure (be that from activity, barometric pressure in the air, my nervous system etc) so in attempting to eliminate this pressure and keep the pelvis cool I've managed to improve. Very difficult, you need alot of help with PN. But I wanted to post here so you and everyone have hope. I couldn't lift a glass of water and had to sleep upto 3 hours a day when I was in the thick of it. I was not living, I was existing and I never believed I would get to the day that I would recognise my life again. But I have, I am and I believe I will continue to make progress.
xx Soula