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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

» IMPORTANT FOR UK SUFFERERS
Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6


Success story!! Surgery and PT

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Success story!! Surgery and PT

Post  Cami90 on Wed Aug 06, 2014 7:22 am

Hi everyone!! I haven't been here in a while, but I need to let everyone know what worked for me. I have spent years searching online and found mostly venting and very little success posts, so I feel like I owe this to whoever might need it.

For those who don't feel like reading the whole thing, what worked for me was a vestibulectomy followed by physical therapy. Dr. Jay Trabin in West Palm Beach performed the surgery and Dr. Elizabeth Harris in Boca Raton was the pt.

Here's my story:
My pain started some time in mid 2008, when I was 18, out of nowhere. I had become sexually active in 2005 and had pain-free sex for all that time. I really don't remember how the pain started, but in the beginning it wasn't too bad, it started getting worse gradually. I had two kinds of pain: the muscle pain, that would hurt during sex and sometimes I had random spasms. And the skin pain, which was a burning sensation on a tiny little spot on the skin, that only hurt on contact. The pain was still pretty manageable when I first spoke to a doctor about it. I already had an appointment to check on an ovarian cyst so I mentioned my pain to the doctor. She did the cotton swab test, and it was extremely painful. I was very lucky to have a doctor who knew what the problem was, as I've read about a lot of women that go through many wrong diagnostics. The problem was that this doctor only knew what it was, but didn't know how to treat it. She copied a couple pages of a book for me and that's it. With time the pain kept getting worse and my interest in sex lower and lower, so I just stopped doing it.
Well, like most of you, I visited many doctors and tried different things. Estrogen creams, lidocaine, a couple of antidepressants, biofeedback, changing all products to organic, other topical creams, etc..
Basically, no topical creams worked for me, biofeedback and a combination of nortryptyline and flerexil worked on the muscle pain, so I had no more random spasms, but I still had that horrible pain from the vestibulitis. (I did the biofeedback therapy with dr. glazer in new york, and the two medications were prescribed by dr. ledger in new york as well. I am from florida but flew there at different times to see each of them).
Anyway, at this point I was about to give up. I didn't have any pain during normal activities, only during sex. Since my interest in sex was absolutely inexistent, I didn't really care. The problem is that I had a boyfriend during all that time, we started dating in the beginning of 2008 before it all started. He was very patient and very supportive, so I felt like I had to do something to get it fixed and save our relationship (we are now married by the way).
Well I ended up finding Dr. Trabin in west palm beach. He reviewed everything I had already tried, prescribed another cream, put me back on those medications that had previously worked, switched my bc pill, and told me that if nothing worked we would consider surgery. Nothing worked. I knew surgery wasn't a guarantee fix but I decided to do it anyway. It went fine, not as painful as I expected. He said it was very successful. That was in october 2012 I think. Well to be honest I had no interest in trying to have sex, so the first 4-6 months after the surgery was great since I sort of used the healing time as an excuse to not trying (an excuse to myself). Time kept passing and my interest never got better. I tried a couple times, it was still painful but not nearly as painful as before, I knew with time it would stretch out and get better. The doctor recommended physical therapy but I never went for it. So at the beginning of this year my husband suggested we should go to a sex therapist to try and see if the problem was mostly psychological since I had already done surgery. I found one and my area and we started going once a week. It was pretty cool, the exercises we had to to at home made us get closer and more intimate, but still no sex drive. I stopped going, and noticed my husband was getting a little anxious. He was very supportive when he knew that I was doing something to try to fix it, like when I was trying a cream, or recovering from surgery, etc. So at this point I knew he wasn't very happy seeing me doing nothing about it. And I also knew it was time to look for something. Not only for him and to save our marriage, but also because I wanted to be normal, I wanted to enjoy sex like I used to before this all started. I wanted to want sex. So I looked for a physical therapist and found a great one here in Boca (Elizabeth Harris at the Davis center). I had no idea what to expect and I thought it would be super awkward. It was actually fine, she is very sweet and makes it feel very comfortable. I went about 5 times, once a week (except for one week when she was on vacation). When I'm there she does kinda like an internal massage, like trigger point release.. and stretches the scar tissue that was left from surgery. But most of the work is done at home with the dilators for 10 minutes every day. I can't believe how fast I improved!! The first couple of days were pretty hard. Some days were harder then others, I would have an easy day and get all excited about it and then have a hard one the next. She explained it might be from doing core exercises the same day. Well I kept doing the 10 minutes a day and got better quickly. I only have two sizes of dilators, I started with the smaller one and on my third (or maybe fourth) visit I brought the bigger one there and did it with her, then started doing it at home. After the biggest one the next size would be my husband's. So, on sunday we decided to sort of use him as a dilator, just sort of get it in and let it sit there for a couple minutes with no movement. I was super scared thinking it would hurt since it's thicker then the dilator, but to my surprise it was actually easier!! I have the silicone dilators (honestly it's not even a dilator, it's just a dildo), but still they will never be like the real thing. So it was so much easier. I couldn't believe it! I just couldn't stop laughing.. lol.. so on monday we were going to do the same thing but he fell asleep, so I did it with the dilator. Today (tuesday) I had my last therapy session and went on to try it with him at night again. We were just going to do the same thing, get it in and let it sit there. Buuuut since it didn't hurt we just ended up having sex! Yaaaay!! I had pain-free sex for the first time in years!!! Yes, there were uncomfortable moments when he went too deep or moved in a way that stretched the scar tissue too much, but I just felt discomfort, not pain!! I am so so happy! So many times I lost hope and just accepted the fact that I would live without sex forever. But then I would stop and realize I am way too young for that and had to try more!! Well I hope this will help some of you girls. Hopefully what worked for me will work for you. If you feel like you have tried everything else and your doctor recommends surgery, don't be afraid to do it! Mine wasn't nearly as bad as I expected! And also, if you do have surgery, don't forget to do to PT as soon as the doctor gives you the ok to do so. I waited way too long, but I'm glad I did it in the end!

Cami90

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Re: Success story!! Surgery and PT

Post  Alana3 on Wed Aug 06, 2014 6:03 pm

Yesssss I was wondering what happened to you mine was very successful too same doctor (as you know Cami, but for everyone else's info!) I was just at his office today, he's an AWESOME doctor (I had a horrible UTI and going away tomorrow and my pain has already decreased thank god!) I am SOO happy you had the same amazing results as I did! Smile we should have a Chipotle celebration lol thank you for your time and helping me make a great decision for myself!

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Re: Success story!! Surgery and PT

Post  marie-marie on Sun Sep 21, 2014 5:54 pm

Hi there!

Great, you're painfree FINALLY! Smile
I had surgery 2 months ago, but until now never found someone with the same experiences. I am from Europe, where vestibulodynia/vulvodynia is rarely known by doctors. However with the pain slowly decreasing I am starting to think again about how it will feel to be painfree for the first time in my life. Your post has definitely helped getting a clue what's coming up... thanks for sharing!
Did the PT exercises hurt? Do you think the PT was neccessary or could you also have done the exercises yourself? I don't think there's any physiotherapist nearby who knows about the issue.. But I dont know what exactly I can do although its painful and where I shouldn't go further...

I hope you can share your experiences Smile


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Re: Success story!! Surgery and PT

Post  Cami90 on Wed Sep 24, 2014 7:41 am

marie-marie wrote:Hi there!

Great, you're painfree FINALLY! Smile
I had surgery 2 months ago, but until now never found someone with the same experiences. I am from Europe, where vestibulodynia/vulvodynia is rarely known by doctors. However with the pain slowly decreasing I am starting to think again about how it will feel to be painfree for the first time in my life. Your post has definitely helped getting a clue what's coming up... thanks for sharing!
Did the PT exercises hurt? Do you think the PT was neccessary or could you also have done the exercises yourself? I don't think there's any physiotherapist nearby who knows about the issue.. But I dont know what exactly I can do although its painful and where I shouldn't go further...

I hope you can share your experiences Smile



Hi Marie, sorry I took forever to answer, I totally forgot! Anyway, give it some time, at 2 months i had no idea if my surgery had worked or not! And don't give up if it hurts the first few times you try anything. Remember you had surgery and need to give it some time to get things working!
Honestly the actual PT appointments aren't necessary. I went once a week, but the real work was done at home. At the office the therapist would just check my progress and sometimes release some trigge points. So if you can find a good one, definetely go for it, but if not you can just do the excercies at home. I don't know if they are different for each person, but i wouln't think so. Mine was done with dilators. You can use those plastic dilator sets that you can find online, but I don't like them so i just used silicone dildos. LOL it feels better and is closer to the real thing so that will help you get confortable before you attempt sex. Anyway, basically you just have to lay in bed and insert it the one size you are almost confortable with and leave it there for 10 minutes. That's it. Then after a couple days when you start getting confortable with it you can try moving it a little bit, like rotating, using it to strech. When that gets confortable you move up to a bigger size and do the same. I took about one or two weeks to move up a size. When you feel like it's time for a bigger size, do a couple minutes of the one you are used to before. Oh and don't do more then 10 to 15 minutes, overdoing it is not good. And don't forget to use loooots of lube. Give yourself time, sometimes you're gonna have days that are much harder (in my case that happened when i did an abs workout on the same day), but do it anyway with a smaller size if you need to and try again the next day. I know it's annoying having to do it everyday, i didn't look forward to it at all, it was more like a chore, but it is worth it!!
As for myself, i'm still in the process of getting used to sex again. Some positions are good, others still a little painful but nothing compared to what it was.
Well I hope it all works out for you!

Cami90

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Re: Success story!! Surgery and PT

Post  Cami90 on Wed Sep 24, 2014 7:48 am

Alana3 wrote:Yesssss I was wondering what happened to you mine was very successful too same doctor (as you know Cami, but for everyone else's info!) I was just at his office today, he's an AWESOME doctor (I had a horrible UTI and going away tomorrow and my pain has already decreased thank god!) I am SOO happy you had the same amazing results as I did! Smile we should have a Chipotle celebration lol thank you for your time and helping me make a great decision for myself!

Yaaay!! I'm so glad it work out for you too! I know it is super scary but i knew it would work! He really is a great doctor! The pt i went to is also great! Did you get back to horseback riding?? I remembered you were worried about that!!

Cami90

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Re: Success story!! Surgery and PT

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