Log in

I forgot my password

Latest topics
» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


What surgeries have you trie?

Go down

What surgeries have you trie?

Post  BpCookie on Sun Apr 28, 2013 9:37 pm

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
avatar
BpCookie

Posts : 209
Join date : 2012-01-25
Location : Arizona

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  Alana3 on Sun Apr 28, 2013 9:43 pm

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 Smile but vestibulectomy was a life saver no kidding

Alana3

Posts : 1090
Join date : 2012-09-25

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  jen007 on Mon Apr 29, 2013 2:50 am

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

jen007

Posts : 151
Join date : 2012-11-05
Age : 25
Location : U.S.A

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  Alana3 on Mon Apr 29, 2013 2:07 pm

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

Alana3

Posts : 1090
Join date : 2012-09-25

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  BpCookie on Mon Apr 29, 2013 6:31 pm

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
avatar
BpCookie

Posts : 209
Join date : 2012-01-25
Location : Arizona

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  Alana3 on Mon Apr 29, 2013 6:40 pm

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 Sad arent you one of the girls who has IC? can you tell me what it's like?

Alana3

Posts : 1090
Join date : 2012-09-25

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  Loulou on Mon Apr 29, 2013 6:44 pm

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

Loulou

Posts : 124
Join date : 2012-01-18

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  BpCookie on Mon Apr 29, 2013 6:51 pm

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
avatar
BpCookie

Posts : 209
Join date : 2012-01-25
Location : Arizona

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  BpCookie on Mon Apr 29, 2013 6:56 pm

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
avatar
BpCookie

Posts : 209
Join date : 2012-01-25
Location : Arizona

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  Loulou on Mon Apr 29, 2013 7:11 pm

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!

Loulou

Posts : 124
Join date : 2012-01-18

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  Alana3 on Mon Apr 29, 2013 7:19 pm

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

Alana3

Posts : 1090
Join date : 2012-09-25

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  BpCookie on Mon Apr 29, 2013 7:41 pm

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
avatar
BpCookie

Posts : 209
Join date : 2012-01-25
Location : Arizona

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  BpCookie on Mon Apr 29, 2013 7:48 pm

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

Posts : 209
Join date : 2012-01-25
Location : Arizona

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  Alana3 on Mon Apr 29, 2013 8:10 pm

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.

Alana3

Posts : 1090
Join date : 2012-09-25

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  jen007 on Mon Apr 29, 2013 11:41 pm



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

jen007

Posts : 151
Join date : 2012-11-05
Age : 25
Location : U.S.A

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  BpCookie on Tue Apr 30, 2013 10:15 pm

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

Posts : 209
Join date : 2012-01-25
Location : Arizona

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  Alana3 on Tue Apr 30, 2013 11:01 pm

No problem let me know what you decide to do!

Alana3

Posts : 1090
Join date : 2012-09-25

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  BpCookie on Tue Apr 30, 2013 11:05 pm

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

Posts : 209
Join date : 2012-01-25
Location : Arizona

View user profile

Back to top Go down

Re: What surgeries have you trie?

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum