Success story!! Surgery and PT

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!

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!  we should have a Chipotle celebration lol thank you for your time and helping me make a great decision for myself!

Hi there!

Great, you're painfree FINALLY!
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

marie-marie wrote:Hi there!

Great, you're painfree FINALLY!
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

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!

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!  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!!