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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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What surgeries have you trie?

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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

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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

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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

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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

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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.

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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?

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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?

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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

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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.

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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!

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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

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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

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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?
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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.

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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

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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.
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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!

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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.
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