Health Organization for Pudendal Education

I live in Mass I met with Dr Conway a few weeks ago he's an obgyn in Merrimack NH. He had an emg test done on me and after listening to my story and doing a physical exam diagnosed me with pudendal neuralgia. He told me to consider nerve decompression surgery with him. 40 to 50% of his patients feel significant improvement, 30% notice some improvement and 20% notice no improvement. Please please please if you have had this surgery with him please contact me. I need to ask you some questions. I would like to know if this surgery improved the quality of your life, less pain. Did it make your pain worst after healing?

Hi,
I live in MA and had bilateral TG surgery with Dr. Conway last year. I don't regret it in the least and have realized significant improvements. Please feel free to ask me anything you'd like.
Best regards,
Karyn

Its to looks to me that your problem is different than me. I never had a hysterectomy or cycts. All that was found with the emg was that there was a dely of conduction on the left side. I've never had atheltic injuries. My problem started at age 18 after I first had penile vaginal sex. I had severe itch in my labia minoras that lasted for years and rawness after urinations. The past year I've had to compress frozen gelpacks between my lips for releif after urinating. The symptoms have evolved recently its gone from my vestibule to my perineum and anal area with rawness. The past year and few months I have developed an unability to sit down without knife like pain in my ass cheeks.

As for the sexual aspect, penile vaginal sex has never been very comfortable, and recently the past year its become horribly painful. My clit also hurts somewhat when stimulated. I'm currently 27yrs old.

I really don't care who sees this. I've been trying to write a book on the past 9yrs but have found it very difficult to focus and write without feeling miserable afterwards. I would rather forget about it.

Do you of anyone with similar symptoms to mine who have had those procedures done? Sorry if its tmi....there is no other way to talk about it nicely.

Bilateral tg surgery? What does that stand for?

Well, my PNE wasn't caused by the hysterectomy or ovarian cysts. Regardless of the cause, an entrapment is an entrapment.
Bilateral = BOTH sides. So, I had nerve conduction delay on the right and left. TG = Transgluteal approach.
Best wishes,
Karyn

Hi Arora,
I've been trying to answer your PM, but for some reason I cannot get the PM to send from my outbox, sorry.
I'll look into the problem and will answer your questions.
You can see my MRI if you want to, I posted it somewhere on this site, look for my posts around the end of april.

Debbie

Got to agree with Karyn, Arora, it doesn't matter how it 'started' it could be a combination of things. An entrapment IS. . . .!! and even if it isn't an irritation IS. . . .. . !! too.
Not sure about the rawness never suffered from that personally, although a facebook friend of mine has. I am NOT promoting this, but she says she has found great relief from emu oil, it has addressed this raw, sore problem although she still has some pain, at least she has found relief.
This is what she has used http://www.allaboutemu.com/songline-emu-farm
She is English so it is costing a fortune ( I can find all sorts of emu oil in England ??) but though I would pass this on as it may be of benefit. Don't blame me if it doesn't work just relaying info.
I have a distinct clitoral pain too although mine is 'weird'. I get a shooting pain with touch, although the lightest touch/brush wouldn't do it. 'Weirdly' it isn't my actual clitoris that hurts but a pain travels along the back of my upper thigh EVERY TIME it is pressed/touched. My pain Dr (and I ) have now diagnosed post femoral cutaneous nerve, perineal branch involvement, as the line of pain (it travels fast(ish) rather than shoots, more weirdness??) is almost exactly the same as this pic shows http://upload.wikimedia.org/wikipedia/c ... ray832.png
I think I am the only person who has this particular problem (anyone??) but mine is definitely a post femoral cutaneous nerve issue at piriformis level as I also have huge problems at the back of my thigh which is served by this nerve.
Of course the dorsal branch of the pudendal nerve also serve the clitoris (and penis) I don't know if this is 'crosstalk' or weird 'wiring' or what but the pain doesn't ever shoot UP, always away or down. They say that the clitoris has around 8000 nerve endings so I suppose they have to come from a few nerve structures? not just the pudendal nerve. Well can only say what my experience is.
This is also very much TMI but that part of my anatomy is no longer associated with sex and pleasure! so I'm almost not bothered anymore but then I am almost 56 so it really isn't so bad for me. Although given the chance
Take care,
Helen

Does PNE cause infertility? Any1 experiencing this is infertile?

PN has no connection with infertility, Leilaa, we don't have to worry about that. Although sex can be a bit difficult.....!

Hi, I just had PND surgery. I had all of the symptoms and tried all of the treatment modalities except Botox and acupuncture. I have posted a dialogue regarding my surgery. Dr. Conway performed the surgery 1/23/13. On one side the nerve had split and twisted around a ligament. The other side had scar tissue. Post surgery I am still having intense burning on left side, under buttocks and down that leg.

Wish you the best. I'm praying for success.....

Grace