nne and surgery

[Guest guest]

nne,

I'm Sara and live near Syracuse, N.Y. My case is very similar to yours. I have had it for over 12 yrs. However, I've had respites, but it has never gone away completely. I feel that my case is nerve related also. I'm in a horrifying relapse and having trouble functioning. Please e-mail me personally at spenna@... Maybe I can get hold of this New Hampshire dr.??????? I'm not that far. Not to be gross, but my "elimination" process sounds VERY similar to yours!!!! I'm in agony. My meds of elavil and neurontin, that I just upped 4 weeks ago, are NOT working at all. I'm not getting any relief. Central NY dr.s DO NOT deal w/ vulvodynia..just vestibulitis..pain on contact. My primary physician is trying to help me...but..together we just whistle in the wind.

Thanks...Sara

RE: [sPAM] Re: Surgeons

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 limay103Sent: Friday, September 14, 2007 3:12 PMTo: 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.> >>