Health Organization for Pudendal Education

Sean,
Always good to a good day so far. Like I said I was willing to try most anything and othhers have been helped by acupuncture and it seems to be gaining since insurance now pays for some sessions a year and I may need to check on that to see how many more before I pay full price. My psychologist just moved my sessions out to 3 week so that will help the finances, insurance does not pay much of those.
I forgot to comment on the doctor's lack of knowledge which seems so strange as no one seems to have heard of the pudendal nerve. It serves multiple functions which could actually be its downfall because everyone is so specialized it does not fit fully into anyones speciality. Maybe in time we can get the word out. I brought the letter for medical professionals listed in the faqsto all the doctors I was seeing initially when trying to get diagnosed so that evem if they did not read further than that sheet at least theywould have heard of it, they may not haave read the sheet either but I tried to encourage them. Maybe it will help the next poor soul that goes to see one of them?
I am trying to take it easy after the move at work, plenty of help provided since everyone knows my issues.I have togo back to using my Sacroilliac (SI) belt when I try to make up some work lunches over the weekend and see if I can avoid knocking my pelvis out of whack! This is a lingering issuefor me but less painful and maybe easier to workaound than the sitting pain.
Keep mending and take it easy on the driving that seems to be the most precarious and wad not suggested to tryuntil 4 weeks. I think 6-8 weekswas the start of PT with nerve glides. Lots of fun ahead for you!
Janet

seanashton42 wrote:Thank you Janet. I'm really interested in acupuncture - .

Hope that you are doing ok this week Sean

I went for some acupunture yesterday to a Doctor i found on the BMAS acupuncture site /find a local practitioner - she hit the right spot with some needles immediately and lowered the pain for a while.

Early days but better than the previous acupuncture i tried at a Natural/Complementary Health place where i don't think my case was understood really and the pain never diminished.

Just saying a Doctor Acupuncturist may be better if you are looking for someone.

Rosemary x

Rosemary,
That sounds like a great reference, so glad to hear you are getting some relief. My gynecologist that knows about PN & PNE said he had 20 acupuncturists and gave me the one that was for me and he was right but I imagine it is hard to match up.
Janet

Janet

Thank you - I am glad to read also that acupuncture is helping you to get better and gradually get off the medication. It prompted me to look again at acupuncture and find a better practitioner.

I now realise that this lady was doing Dry Needling on sore trigger points and seems to be pinpointing the irritated nerves in my vulva correctly.

Your gynaecologist sounds great - i can't think of one here where i live who would have 20 acupuncturists on hand !

ciao

Rosemary x

Rosemary,
I count myself extremely lucky to get good medical help throughout this condition. The gynecologist also looked at all of me suggesting I get help from all sides, acupuncture, meditation, psychologist, PT, aqua therapy, etc. Everyone helps and I am finally getting good days. We picked out flowers yesterday for my hubby to put in around the pond in our backyard to enjoy this summer. I can see it from the kitchen window when we eat meals and soon it will be warm enough to lay outside on my nice cushioned lounge chair. Take Care,
Janet

Hi, I too am in the UK and have just had an appointment made to see Doctor Wong in Bristol late June. I am beside my self with pain. I hope everything goes well. Cheers Shirley

Dear all,

I wondered how everyone is getting on with their recovery post-surgery? (Andrew, Sean, any ladies around ?)
I'm a 26 year old woman who has been referred to Dr. Wong for PN decompression surgery by Dr. Greenslade, and currently considering whether to do it. Am scared out of my mind...

Wish everyone the very best of health and wellbeing in 2014!

Merry Christmas,

Kassie

Hi Kassie,

Welcome to the forum. Well, I'm 9 years post-op so I can't say I'm still recovering but I do understand the fear and anxiety that go along with considering surgery. What other things have you tried so far? PNE surgery is kind of a last resort if conservative treatments don't help and if you and your doctor are very sure of your diagnosis. All the best with your decision.

Violet

Hi Kassie,
I am doing pretty well. My feet gave out first making Christmas eve dinner so far and that is better than the PN pain. I still have to be careful, use cushions to sit and actually decided not to work too much (6-7.5 hours a day). The gynecologist said this was the right thing to do especially as I only have 2 years to retirement and he signs paperwork for me to not work the full days. Hope you can enjoy part of the holidays and have a better 2014!
Janet

Dear Violet and Janet

Many thanks for your reply. I am happy to hear you are doing better.

I have had PN for a year now and it started as vulvodynia about 3 years prior to that. I am on pregabalin 300mg & amitryptiline 10mg a day and was unable to have pelvic floor physiotherapy as my pain shot up for days after. My partner and I have not been able to have any sex in over a year and we would like to one day be able to again and have children. It seems surgery is the last resort, however I am understandably scared of having it.

Will see the surgeon in the new year to ask questions..and keep you all posted.

Thank you!
Kassie