/ Testing for Pudendal Neuropathy- MARIANNE

[Guest guest]

Thanks

for your good wishes. My appointment is next Tuesday, so I wished I could

have met you. If Dr. C doesn’t think that you need surgery, then he must know.

Keep trying the blocks from Dr. Q, and maybe the Botox would help. I will let

you know as soon as my friend has her Botox done. In fact I know of another

girl in California that was thinking of it also. Does skin rolling on the area

help you at all, or make it worse. That would be something you could do

yourself. But spend some time talking to Dr. Q about your options. One thing

about Dr. Quesada, he never rushes you out of the room or does not want to

talk. He is just a marvelous doctor. I could just tell last month that he was

frustrated himself as he wanted to help me so bad.

If

you had talked to me in January, it would have been a completely different

story. It was an awful month, my pain escalated past even when I first started

almost two years ago. I was crying at my visit at Dr. Conway’s office. It was enough

that he called Dr. Quesada immediately. That is when they decided on the series

of Impar blocks. I have never cried at a doctor’s office before, but here it

was twice, and by the time I got to Dr. Q's office, he gave me a sedative before

he gave me the first block and gave me an increase in my pain medications. I

take some heavy duty narcotics already, and I was so upset that I had to

increase them. I truly felt suicidal during January, but now look – I am doing

so much better. That is why we should never give up or think that it will never

get better. As doctor Conway told me, I have to be patient, it had not even

been six months yet. He explained all over again about how long it takes for

nerves to heal. So for all of us, we just can’t give up, but keep trying, and

trying and trying. If one thing doesn’t work, then something else will.

I

still will say again, if you have vestibulitis as bad as I do, where it hurts

unbearably both when touched and all the time, really consider a vestibulectomy.

They are marvelous, very few stitches, very little recovery time, and in most

cases (80 percent) they work. And if you think your pain is bad enough in the

pelvic area, get yourself checked for PN, so at least you will know. Keep going

to PT if you can, if you have one you can go to. Or learn how to do the skin

rolling at home. PT is marvelous to release the connective tissue. Do all or as

much of all these things as you can. Just keep trying and eventually something

will work. It is just that we are all  so different, we don’t know which one

will work. As I mentioned, I have a long way to go – I still have to be able to

walk more, and to get rid of this pain. Dr. Q said when I reach the point of no

pain, it will take me a year or more to detox from all the narcotics I take.

But he said that doing it the right way, there will be no problem, and there is

a tapering program he will put me on. He said I am not addicted, only

dependent, as I do not get any high from taking the drugs, only pain relief.

And narcotics only take the edge off of nerve pain. There is no pain medication

that works on nerve pain. This is why the doctors encourage Neurontin, Cymbalta

and Lyrica. For some people these work miracles, but I could not take them. But

if you haven’t tried them for pain ask your doctor about them.

So

I am looking forward to the day when I can write in to all of you my success

story, but I am a couple of years away from that right now. And also, please

ask me any questions if you want as there is not much I don’t know about PN,

and I will always help as much as I can.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of euc1109 s

Sent: Tuesday, February 12, 2008 11:07 AM

To: VulvarDisorders

Subject: Re: Testing for Pudendal Neuropathy- MARIANNE

nne,

I am SOOOOOOOOOOOOOOOOOOOOO happy for you. I can't

even describe how happy. I feel as if your progress is almost like my

progress. It makes me feel like if you are getting better, as bad as your

pain was, that we can all get better. I agree that Dr. Conway and Dr.

Quesada are wonderful. I am going to see Dr. Q next Wednesday. I

think that my nerves are inflamed and just need to calm down.

Unfortunately I have not seen any progress yet, and Dr. Conway does not think

that I need surgery.

Raquel is great as well. I stopped going to see her

because my insurance did not cover it. I also don't know if I really need

it. It's wonderful that she's been talking to P about pudendal

neuralgia because now you know you are getting the best care!

All I can say is that i'm so happy for you!!!!

millburytimes wrote:

Hi

Hollis,

I

am doing very well – thanks for asking. I stayed off the groups for awhile to

give myself a chance to heal. This is a long recovery period – at least two

years and I have only had six months of recovery. I have had some good months

and some very bad months, and I seem to be on the upward swing now. I went out

shopping on Saturday and even ate dinner out (on my cushion). But this is

remarkable as I am still in bed (daybed in front of TV) most of every day. I

also take a lot of medication to see me through the day.

Unfortunately

my vestibulectomy did not take and the nerve endings grew back after three

months. I still would have a vestibulectomy again in a heartbeat, as I do

believe they are wonderful and heal most people. And the recovery is so easy

– virtually pain free. There is a 20 percent failure rate, and I was one of

them. I did have three months of wonderful complete vaginal and perineum pain

free. I passed the q-tip test with flying colors – and like I said – I was

completely pain free with and without touch. Now it is all back again, but Dr.

Conway feels it will eventually be pain free again as my pudendal nerves heal.

The

surgery was completely successful – the nerve was compressed on both sides

and Dr. Conway was able to free the nerves. Following surgery at my first and

second month checkup, Dr. Conway was able to do an internal exam that was

completely pain free. He pressed on the PN, and I didn’t feel any pain. But

the internal nerves are inflamed from being disturbed and the nerves in the

butt and the perineum are inflamed from being disturbed also. They use

retractors during surgery which pull all the butt muscles, bowels, vagina out

of place. That is why I am getting the impar blocks – these blocks calm all

the nerve endings in the pelvis and my PM doctor (Dr. Quesada) thinks that this

will help. That is where most of my pain is located – in the butt. It feels

like I was slammed with a 2 x 4.

I

started PT today and my therapist (Raquel Perlis) did not find any trigger

points or muscle spasms. She thought all my muscles were in good shape

considering I have been in bed the last six months. She had been in touch with

for directions on post pudendal surgery PT. It has only been the last

several weeks that I have started to move around. I got a good dose of an

hour’s worth of skin rolling which really felt good, and will start internal

work in about a month. Raquel said I was her only client that never screamed or

cried during the skin rolling. For some reason I find it very soothing.

So

I have a long way still to go before I am pain free, but I am making baby

steps. And I am so glad I had the surgery done. It was the very best decision I

could have made. Now everything would be perfect if the nerves would just hurry

up and heal so I could be pain free. I have a wonderful team of doctors and

they will do everything possible to help me. If these blocks don’t help, then

I am going to try Botox. Dr. Conway keeps telling me the story of his patient

who kept telling him that it was the worse decision she ever made to have the

surgery. She was a bad case, as bad as I am, and she kept telling Dr. Conway

this over and over. At the end of two years, she called him up and told him it

was the best decision she ever made as she was completely pain free and

healed! He keeps telling me that this will be me – it just takes that long

for the nerves to heal.

nne

From: VulvarDisorders [mailto:VulvarDisorders ]

On Behalf Of hgz

Sent: Monday, February 11, 2008 2:58 PM

To: VulvarDisorders

Subject: RE: /Testing for Pudendal Neuropathy

nne,

I have been

thinking about you and wondering how you were doing post-surgery, so it's nice

to see you back on the group. How are things going in your

recovery? Are you where you

expected to be at

this point? You mentioned having some blocks done. Was this part of

your

" plan " -- or something that is a response to new developments?

Hope you're doing

well. You deserve it after all you've been through!

Hollis

On Sun, Feb 10,

2008 at 11:08 PM, millburytimes wrote:

> Carolyn, I

have PNE, LS, Vulvodynia and Vestibulitis. I am almost six months

post pudendal decompression

surgery.

nne

From: VulvarDisorders

[mailto:VulvarDisorders ] On

Behalf Of Carolyn52192@...

Sent: Sunday,

February 10, 2008 11:09 PM

To: VulvarDisorders

Subject: Re:

/Testing for Pudendal Neuropathy

nne,

What is your

diagnosis

C

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