Re: V V or PN? Help! I don't want unneccessary surgery!

[Guest guest]

Hi Marcia, I certainly understand your concerns. I have Pudendal Neuralgia/Neuropathy (whatever they call it now). I have decided against Pudendal Decompression surgery. I flew to NH in Nov. to have the EMG test - and then I had a round of bilateral PN blocks. I flew back in Jan. and had round two of the bilateral blocks. If you are not sure now about a vestibulectomy, then give yourself some time to study and learn all you can. I do know the Pudendal nerve can cause vulvar pain, as well as, bladder pain. It just seems to present different for each person. Some may have genital pain (men can have PN too) some may have bladder pain, or both, some may have pain anywhere in the perineum. There are so many variables. For instance, pelvic floor dysfunction could cause PN. Tight muscles could be clamping down on the PN branches. A misaligned pelvis could cause this...when the pelvis is

off, the muscles try to do the work of the ligaments to hold things together and can compress nerves. Did the doc do a rectal exam on you, too? That can give clues about the PN branches. During the rectal, I was tender around the sacro-spinous ligament on the right side...the right side is where I have all the pain with sitting. Did he say anything regarding your pelvic floor muscles -- are they tight? Hang in there, Marcia... and take your time to read and study and go by what you feel is best for you body. Hugs, ChelleHave you tried looking on Pudendal.info? There is a lot of good info on there and also a forum. Marcia Gallas wrote: I had a pelvic exam today and got thrown a REAL curve ball. I am confused and don't know

what to do. I DEFINITELY don't want unnecessary surgery.Here is what happened. I had an excrutiating pelvic exam. I went in thinking that I was going to tell the doctor I wanted to schedule a vestibulectomy. In late 2006 he had diagnosed me with vulvar vestibulitis. Today he told me he believes I have pudendal neuropathy!!OMG! I wasn't expecting that at all. I asked him why PN and NOT VV. Well, I wasn't red where he thought I should be. I didn't respond to pain with manipulation. And yet, it was a VERY painful examination. It seems like my pain is very localized to the vestibule/opening. If it were PN would that be the case? He wanted me to come back andthen he would give me a steroid injection in the pudendal nerve. He said I would have to come back every 2 or 3 months and that it would be a long process. I guess I have been so stuck on the vv diagnosis for so long that I said I didn't want

the injection, I wanted a vestibulectomy. So NOW they are scheduling surgery for a vestibulectomy!!!!!Some of you may remember that I was concerned because he typically removes the Bartholin's glands when he does a vestibulectomy. He said for me he would NOT remove them because that would make my pudendal neuropathy worse. Could it be that I have BOTH conditions? Does anyone here think I should have the injection? If it worked would that mean that I DON'T have VV? Again, if a vestibulectomy will not help me, I don't want to go through it. And why do you think he would agree to the surgery? It's not like a patient requesting aprescription for goodness sake! I went to the PN site nne recommended. So much of it sounded like me that now I really AM confused.I need help and advice, PLEASE!!! A second opinion isn't feasible. This doctor is a leader in the field and there isn't another doctor for

this within 100 miles.Thanks in advance, Marcia Sorry, for some words running together...can't seem to fix it!

[Guest guest]

awwwh

Jeesh Marcia.. *sigh* Hon I sure don't have an answer and hope someone's responded to you but I sure feel for you BIG TIME.... I'm afraid I'd be as confused as you and ready to pull my hair out. In fact I was and did as I went thru so many different diagnosis's myself and know how helpless and confused you feel. I just hope and pray you get the right answer hon.

Although I would suggest it's not wise to make any sort of a major decision right now under that sort of emotional pressure without knowing more hon. And too am a little shocked to think a physician would say 'ok I'll do the surgery' on your request...without having a good reason to believe it would be helpful.

Big hugs hon and I am just so sorry.

Dee ~;(

[Guest guest]

Hi Chelle, I've definitely decided against the vestibulectomy. The

new diagnosis had to " sink in. " I don't think it would help. It's

clear to me that PN is causing my pain. I'm having a terrible flare-

up ever since my pelvic exam. I can't feel when I have to empty my

bladder so I just go when I think it is time. I hope that goes away

because it is unnerving, no pun intended. I GUESS I will have the

steroid injection even though I am scared witless of having the

injection. Some of you seem so much braver about this stuff than I.

Sigh.

I know I have tight muscles and I'm also sure I have a misaligned

pelvis. My PN was caused by a freak accident but the other stuff I

think I've always had....an accident WAITING to happen. We don't

have a good PT in my area. In fact, BAD PT messed me up at a time

when I actually think my PN was on its way out. Now it won't leave.

The doctor didn't do a rectal but I found out about the tight muscles

when I went to the PT. That was one thing she did seem to know

about. I'll keep you posted.

Thanks for caring.

Marcia

[Guest guest]

Hi Dee: Yeah, I was pretty perplexed that the doctor agreed to do the

vestibulectomy. He doesn't know it YET but that idea is now off the

table.

I'm pretty miserable and afraid of getting the steroid injection into

the pudendal nerve. Has anyone here had that particular procedure? I

am to use a numbing creme an hour before the appointment. I haven't

made the appointment yet.

I just know I do NOT want to deal with this for the rest of my life!!

Marcia