RE: [SPAM] Re: Surgeons

[Guest guest]

I also have run the gamut of

doctors in the Boston area. My symptoms started in May of 06 when I woke up one

morning with a slight twinge of pain near the outside of my vagina/thigh area. Then

the burning started. Up until then I had no history of any GYN problems. And because

I had had a hysterectomy more than 30 years ago, I had not needed anything more

than a yearly checkup with my primary care doctor. I have never even had a

yeast infection. When in May of 06 I went to my PC with the vaginal pain, she

sent me to a GYN. He was the one who thought I had V/VV with possible nerve involvement.

I am not going to write the really whole story again, (it would be volumes) but

for anyone who is interested you can email me personally, and/or search through

all my past posts. In the last seventeen months I have gone through hell –

with more tests than I want to count and appointments with over 20 different

doctors, in ten different specialties. Dr. and Dr. Green were two of

the doctors I saw. I have written my dislike of Dr. , and Dr. Green was

pleasant, but felt that she couldn’t offer any other suggestions (oral medications,

topicals, PT, etc.,) than what I was already doing.

And I have done everything –

anytime something was suggested on this list, I tried it.

It wasn’t until

February of 07 that I found Dr. Mark Conway in NH, who is a specialist in pelvic

pudendal nerve conditions. He also is a GYN plus even finds the time to deliver

babies. He started me on the conservative route – more tests, nerve

blocks, medications and PT. He referred me a pain management doctor (Dr.

Quesada - who is out of this world – I just love him).

My PT is Raquel Perlis in Wellesley

who was trained by Rhonda and has over 25 years of pelvic PT experience. But

even with all of this, (and by that time I felt I had found the best in medical

care) nothing was working. For the last year I have been in bed lying on my side.

I could not sit, I could no longer drive, I could only walk more than a couple

of feet to the bathroom, plus I was taking enough narcotics that could choke a

horse. (Which really scared me!) I was getting worse every day. I was slathered

in Lidocaine gel and ice packs. My bowels and bladder were becoming affected. Finally

one day I had a PT appointment where she was doing internal work and she

pressed on the pudendal nerve. It left me screaming in pain. That day (in

August) I called Dr. Conway and said I can’t take it anymore, schedule me

for surgery. I knew I was taking a chance, because at that time he had done less

than ten. He is the only doctor in the US that does this form of surgery. He

trained for six months in France in 2005 learning how to do it.

So now I am one month next

week post surgery. And I am much better – that is the most important

thing! I still take all my meds, and that won’t change for awhile. I

still have pain, but it is a different pain. The pain is concentrated in my

upper butt – feels like I was kicked by a horse. It takes about four

months for this pain to diminish.

Along with the pudendal nerve

compression surgery I had a vestibulectomy. That turned out just wonderful,

more than I could ever have expected – no more pain, burning, etc. I

haven’t used any Lidocaine or ice packs since I came home from the

hospital. My urine stream is very strong, and not to be gross, but my BM’s

are a different consistency, strength and volume. It is going to take a long

time – maybe two years before I will know the full results of the PN surgery,

as nerves take an extraordinary amount of time to heal. And I will still need

at least two years of PT to strengthen the pelvic floor muscles, and to get my

whole body back in shape.

But just to get rid of the Vulvodynia/VV

pain makes me so happy! I don’t know how this exactly works, but Dr.

Conway said the pudendal nerve controls the vulvar pain. My pain formerly was

24/7 and on contact – and now it is gone. Yesterday, I even took a shower

and used real soap in the vulvar area!

Next Monday, I go back for my

third post surgery checkup. I still have more questions – what about the

LS, Dr. said I had (which I think was just a money making way to get me

to keep coming back).I don’t know whether Dr. Conway will treat me for

other women’s problems (but his web page says he does), but if he doesn’t

(and I definitely need to get this LS diagnosis found out), them I think I will

try Dr. Boardman in RI. I have heard very good things about her from two other

women.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of limay103

Sent: Friday, September 14, 2007 3:12 PM

To: VulvarDisorders

Subject: [sPAM] Re: Surgeons

I had a vestibulectomy in 2003. My pain was

24/7 but my diagnosis

was vv, not dv because the pain was confined to the vestibule and I

probably would have had no pain if I could have lain on my back all

the time! Sitting really killed me. And sex was just kind of

painful, but HELL afterwards... for days. I did great on tricyclic

meds... got rid of my 24/7 pain, but sex still hurt, so I had the

vestibulectomy. I had pt before my surgery, but now realize it

wasn't good pt. My surgeon referred me to a pt after my surgery and

I learned about pelvic floor stuff my other pt hadn't addressed. So,

in my case, I needed all 3: drug, surgery, pt. Feel free to ask me

about my surgery. I tried a million things before I did it, and my

only regret is that I didn't get a really expert pt evaluation

first. My gut is I still would have needed surgery, but... who knows?

As far as surgeons... I had mine with Dr. in Rochester,

NY and was very well taken care of. I know other women on the list

have spoken favorably of surgery with Dr. Goldstein (NY and

DC) and Dr. Nyerjesy (in Philly).

Lia

> >

> > >Hi there,

> > >I have had a successful Vulvar Vestibulectomy. Unfortunatly my

> surgeon, Dr. on is now retired. I have, however heard

> many good things about Dr. Stanley Marinoff. He is probably the DC

> surgeon you have heard of. I would say that to the best of my

> knowledge he is the best surgeon for VVS in the states at the

moment.

> >

>