What surgeries have you trie?

Hi girls, Was wondering what surgeries you have tried? What surgeries are there that can be done? i see a new Dr. next month and am going to talk about surgery options. Im so scared to have surgery but Im also scared to keep going as I have been.

Thanks

Cookie hugs to all

I had a partial vestibulectomy in December I was terrified and it was definitely a roller coaster of emotions healing (took 6 weeks) BUT it wasn't nearly as bad as I thought it would be I walked two miles a week after my surgery and the outcome is amazing. I look the same down there and the feeling is better too. If you're a candidate for that I definitely recommend it. Bit please please go see specialists who know what they are doing most docs are like here try this one wasn't even willing to operate when they thought I had endo! be careful with who you to to but im sure you know that but vestibulectomy was a life saver no kidding

I had a full vestibulectomy in July of last year. I have PVD, which seems to have good results with surgery. I stayed confined to my/ couch for the entire 6 weeks of recovery, just to ensure I would do no harm to my area. It was so most frightening thing I have ever done, but for me 100% worth it. I was is constant pain for years and now I'm 99% cured. As long as I dilate regularly I'm never in any pain and I'm able to have sex. The only down side to a full vestibulectomy is they remove the glands that produce lubrication. I'm not dry, but I can't really get "wet" anymore....nothing a little lube can't fix though! I would say if you have nerve/ muscle issues, surgery is the way to go. If you have any questions about the details of the surgery or recovery please feel free to ask! I know how hard it is to find information about surgery and peoples personal experiences with it.

-Jen

Another thing, Jen lost her lubrication I did not. Please keep in mind that is way different for everyone! But both of us had amazing results and I can speak for myself that if I had to go thru it again I would. It's really not as big of a deal as I thought it would be! Don't be scared about any surgery because it will ultiamtely help you in the end. It was totally worth it I can't even emphasis how much it helped me. The 6 weeks was sort of a pain in the ass but I was off my pain killers by day 2. Seriously AND my stitches ripped. I was out of my house on Day 5 eating at a bar. Honestly, I was surprised by how easy it was!Even though I doubted it the entire time, the healing process is annoying so I thought I wasn't healing right, ask Jen I was talking to her everyday freaking out haha

Alana hun, I was hoping you would reply. So what is a vestibulectomy? I wish that I could have your Dr. do my surgery. Im so glad that the surgery worked for you. Ive had enough of this daily Hell. Two yrs. is too long for me. I want to get on with my life.

You pulled your stitches? Did you have to go to the ER? For some reason, when ever I have stiches, I end up pulling them. I had vaginal surgery when I was in my 20's and I pulled my stitches and ended up bleeding for 10 days straight before the surgeon told me to go to the ER. I had to drive myself and by the time I got there I had already bleed through the folded wash rag that I had stuffed in my panties and bleed through my shorts. The ER Dr. had to wait for my surgeon to give her instructions. I Bleed so much that the ER ran out of maxi pads. Screamed bloody murder while the Dr. glued the skin to stop the bleeding and I passed out twice. It was a horrifying experience. So thats one reason why Im so scared.

Thanks for replying honey. It does give me hope.

Hugs to you.

Cookie

A vestibulectomy is just what it sounds like they remove your vestibule. Sounds a lot more scary than it is. It seriously wasn't that bad. Why don't you call my doctor and talk to them over the phone? They could maybe help you that way.

Ok I ripped one stitch out it just hurt, but I was already bleeding so it didn't really matter. I think I bled for 2 weeks after and then again when he took out the stitches (talk about something that did hurt!) I seriously don't think that will happen to you, but if it does it wasn't a horrible experience I just knew something wasn't right. I can't even find a scar lol he made sure to patch me back up to normal (whatever that is). But yeah for vulvodynia it worked well for me but again everyone is diffrent keep that in mind!

Now I'm worried I have IC, like flipping out which is stupid, but I keep peeing like crazy, always something arent you one of the girls who has IC? can you tell me what it's like?

Yikes BPcookie that sounds traumatic you poor thing! Was that surgery related to your LSC or did that come after?

Hello Jen hun, I just noticed that you had a full Vestivulectomy and Alana had a partial. I dont know what a Vestibulectomy is, let alone what a full one or partial one is. Can you please explain? Also what is PVD? I have Lichen Simplex Chronicus which is the thickening of the vulva skin. Just looking at the area you would never even know there was anything wrong. My LSC only covers an area about the size of a nickel but the burning pain covers my entire vulva area, labia minora, labia majora, butt cheeks and inner thighs. I believe that if they could fix that small area of my vulva that it would fix the pain felt every where else. Also, I am 48 yrs old, going through menopause and am already dry,so surgery wouldnt be a problem in that area. Ohhhhhhhhh I hope the Dr. will approve surgery and I hope they dont botch it.

Any info on the surgery and recovery would be great.

Thanks. Hugs to you

Cookie

Lou Lou hun, The surgery was for a shelf of skin that was up inside my vagina. The Dr.s could not agree to what exactly the skin was, only that it should not be there. I opted for surgery and totally regret having it done and regret not suing the stupid surgeon. I had it done over 24 yrs ago, way before this vulva pain started.

hugs to you

So doesn't sound like that surgery caused your LSC, but i can totally understand why you're nervous about surgery now. But I know from your posts that you've tried a helluva lot of things so maybe surgery is an option now, especially if its just a small area of skin affected??? Just do your research (I know you will!) and keep us up to date wont you?

Hugs right back at yah!

I responded on top don't know if you saw it or not...

Hi Alana hun, I just now saw your reply. No I don't have IC, thank God. Don't need another problem. Oh honey, I sure hope you don't have IC. The only problem I have is that I pee myself when I sneeze or cough. Soooo embarrassing.

So, are you sure that you don't just have a bladder infection? I'm so sorry darling. All you need is to finally get over the vulvodynia and then get another problem. I will keep my fingers crossed.

Take care honey

hugs
Cookie

Alana hun, I forgot to ask, can you please tell me your Dr.s name, location and if possible, his phone number?

Shit, I dont know, somedays I wake up in the middle of the night to pee others I dont I really only pee a few times a day and this may sound gross but I feel like its related to my GI because if I cant poo it makes me pee? I don't know. But no foods I eat trigger it (except for cider beer but a lot of people I talk to have this problem and they're healthy so maybe I'm flipping out for no reason!) Listen, I have lidocaine patches that I used for a while, ask for a prescription and you can do whatever you want! No joke. Today I've peed like 5 times already is that healthy? LOL!

My doctor's name is Dr. Jay Trabin in West Palm Beach, Florida (take a tropical vacation while you're at it and you can meet me! jk) His phone number is 561-687-5000. Seriously, they are the best ever- I called them freaking out many times and they listen like no ones business.

Hi BpCookie,

The difference between a full and partial vestibulectomy is with the partial they only remove part of the vestibule...with a full they remove the entire vestibule. With a partial you still have your glands. I honestly think I could've had a partial and still had the same results I had from the full, but my Dr. wanted to ensure I wouldn't have to go back for a second surgery since my pain liked to switch sides every once in a while. PVD is Provoked Vestibuldynia, which means I only had pain when I was touched "down there"...specifically on the inner ring, to the left. I still have pain, but only if I don't dilate. If I dilate regularly I'm 100% pain free! It's pretty amazing. I had my surgery performed by Dr. Goldstein in New York. He has other offices too, but I'm not sure where. I wanted him to be the one to do it because of his book "When Sex Hurts." Plus he had a pretty high success rate and has done the surgery over 500 times...So he has a lot of experience. I felt like I could trust him with such a delicate part of my body.

Here are the exact recovery instructions that I followed:

http://pelvicpainnewyork.com/about-us/Post%20Operative%20Instructions%20for%20Vestibulectomy11_11.pdf

Also here is Dr.G's website:

http://www.cvvd.org/

Hope this was helpful!

-Jen

Alana hun, thank you so much for the info. and your never ending support.

No problem let me know what you decide to do!

Jen hun, thank you so much. Im looking at his web site right now.