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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 …

Comments: 7

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 …

Comments: 2

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 …

Comments: 10

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 …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

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 …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


A Combination of Griefs

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A Combination of Griefs

Post  Sahai on Wed Nov 07, 2012 9:28 am

It's been at least 9 months since I've been diagnosed with Vulvodynia, specifically, provoked vestibulodynia (or PVD). I was about to turn 22 at the time. I may have been one of the lucky ones because as I explained my symptoms to a nurse at the time, she was able to refer me to the only clinic that was able to help me in the Eugene area. Well, not really a clinic. I was referred to the Pelvic Wellness Center, a physical therapy place that used a combination of things to help me with my vulvodynia. And the reason I still consider myself lucky is because as I talked more to my physical therapist Shannon, she told me to read the book "Why Sex Hurts" by Andrew Goldstein to learn more about vulvodynia. Just reading up on other people's stories made me realize I could have been suffering in silence for longer than needed. And that most women who go and talk to their doctors about these symptoms would have had their symptoms dismissed or mislabled as a mere psychological problem-or worse, ridiculed and belittled as being too 'nervous and tense'.

Though I am now trying my best to see the bright side of seeking help quickly and with the right people, I've gotta say, vulvodynia still sucks. When I was first diagnosed, I felt like I was a completely broken woman. But not only that, the nurse at the time who saw me asked me a required question in her practice to try and figure out if my vulvodynia had any connections to sexual abuse. And I found myself saying yes. In those few moments, everything in my life seemed to have shattered. My mind was in a constantly bleak state. Even though I was beginning therapy of every sort at the time, I just could not see a light at the end of the tunnel.

The reason I am joining this support group online is because even though I have gotten a lot of help working through other issues, I still haven't found others I can talk to specifically about vulvodynia. I know that I've gotten a lot better through the help of dilators, lidocaine and stretches, but there are times in which the pain just comes back. Two weeks ago, I made an emergency appointment to see that same nurse to have her look at me again because I feared this new pain was associated to what I thought was an infection or a bump or something new. But she simply looked at me again and said: You are perfectly healthy. Just remember to put some lidocaine on it. I had reached a point in which I thought the pain would be gone forever if I just pushed myself through this rough spot in my life. But, I have a feeling it's just never going to go away.

And during those times when I believed things would be ok, that pain showed its ugly head again. I cried and felt so alone. I have only told a few friends about it, and they have been sympathetic. But then they playfully talk about getting with a guy, or getting with their guy and it stirs up those past feelings of feeling broken. At a certain point in the healing process, I decided not to have sex. But, I can't keep this up forever. I don't mean that in a mere physical way, but emotionally, it's been affecting the way I interact with guys. If I think a guy is cute and that I wish it could lead to something fun at the very least, I shut myself down. Nope. Can't do it. It's gonna hurt. *sigh. That doesn't exactly make me feel very confident.

Anyways, I wanted to join this online support group so that I can meet other people who have gone through this, hear their stories and find out how each person has dealt with it. I mean, I can't be alone on this. I definitely feel alone at times, but I hope this will be a great place to ask questions and vent at times. I'm sure to vent at times...

Sahai

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A long road to recovery

Post  jen007 on Thu Nov 08, 2012 4:26 am

Sahai wrote:It's been at least 9 months since I've been diagnosed with Vulvodynia, specifically, provoked vestibulodynia (or PVD). I was about to turn 22 at the time. I may have been one of the lucky ones because as I explained my symptoms to a nurse at the time, she was able to refer me to the only clinic that was able to help me in the Eugene area. Well, not really a clinic. I was referred to the Pelvic Wellness Center, a physical therapy place that used a combination of things to help me with my vulvodynia. And the reason I still consider myself lucky is because as I talked more to my physical therapist Shannon, she told me to read the book "Why Sex Hurts" by Andrew Goldstein to learn more about vulvodynia. Just reading up on other people's stories made me realize I could have been suffering in silence for longer than needed. And that most women who go and talk to their doctors about these symptoms would have had their symptoms dismissed or mislabled as a mere psychological problem-or worse, ridiculed and belittled as being too 'nervous and tense'.

Though I am now trying my best to see the bright side of seeking help quickly and with the right people, I've gotta say, vulvodynia still sucks. When I was first diagnosed, I felt like I was a completely broken woman. But not only that, the nurse at the time who saw me asked me a required question in her practice to try and figure out if my vulvodynia had any connections to sexual abuse. And I found myself saying yes. In those few moments, everything in my life seemed to have shattered. My mind was in a constantly bleak state. Even though I was beginning therapy of every sort at the time, I just could not see a light at the end of the tunnel.

The reason I am joining this support group online is because even though I have gotten a lot of help working through other issues, I still haven't found others I can talk to specifically about vulvodynia. I know that I've gotten a lot better through the help of dilators, lidocaine and stretches, but there are times in which the pain just comes back. Two weeks ago, I made an emergency appointment to see that same nurse to have her look at me again because I feared this new pain was associated to what I thought was an infection or a bump or something new. But she simply looked at me again and said: You are perfectly healthy. Just remember to put some lidocaine on it. I had reached a point in which I thought the pain would be gone forever if I just pushed myself through this rough spot in my life. But, I have a feeling it's just never going to go away.

And during those times when I believed things would be ok, that pain showed its ugly head again. I cried and felt so alone. I have only told a few friends about it, and they have been sympathetic. But then they playfully talk about getting with a guy, or getting with their guy and it stirs up those past feelings of feeling broken. At a certain point in the healing process, I decided not to have sex. But, I can't keep this up forever. I don't mean that in a mere physical way, but emotionally, it's been affecting the way I interact with guys. If I think a guy is cute and that I wish it could lead to something fun at the very least, I shut myself down. Nope. Can't do it. It's gonna hurt. *sigh. That doesn't exactly make me feel very confident.

Anyways, I wanted to join this online support group so that I can meet other people who have gone through this, hear their stories and find out how each person has dealt with it. I mean, I can't be alone on this. I definitely feel alone at times, but I hope this will be a great place to ask questions and vent at times. I'm sure to vent at times...


Sahai,

It seems like we have gone through the same struggles. I too have PVD. I was diagnosed at 17, but have been suffering since 15...I'm now 20 years old. It's been a long road to recovery for me, but there's a light at the end of the tunnel. I can relate to having friends talk about guys and playfully joke about sex. When I was in high school all of my girlfriends started having sex and just couldn't wait to throw it in my face, since they knew I hadn't yet...It was like a funny game to them. I didn't know at the time that I had a pain disorder. I just never tried to have sex...just wasn't ready I guess. Eventually I tried to have sex with my long term boyfriend. It was the most painful feeling I had ever experienced. It felt like someone was inserting a hot knife made of sand paper in my vagina. Every time I tried to have sex I'd have to quickly run into the bathroom and take a warm bath to try and sooth the pain. I'd cry afterwards. Even though I had an amazing boyfriend I still felt alone and very depressed. I knew I had to see a doctor. The first time I went to the gyno was one of the worst experiences I've had with a doctor. She told me that I had an easily curable bacterial disease and put me on a medication that would clear it up. It never worked and after seeking help from other doctors they told me my previous doctor had me on a medication for staff infection that would in no way had helped me with the problem that she thought I had. So 2 months of taking a medication that would never help me...a complete waste. It took me 4 doctors to find the right one and to get properly diagnosed. After trying different medications, topical creams and therapies nothing worked and my last option was surgery. It was the only thing I hadn't done and the last thing I could do so I had my doctor searching for someone to operate on me. In the mean time I did some of my own research and found the exact book you mentioned by doctor Goldstein. I told my doctor that I wanted him to be the one to operate on me. He is the best in the field and has had many success stories. Somehow out of pure luck my doctor ran into him at a seminar and got me a recommendation.

I had a full vestibulectomy on July 6, 2012 in New York. It was one of the most scary things I had ever done in my life, but maybe one of the best things I ever did for myself. So far it's been successful. I haven't been able to have sex yet to know if it has true worked, but I have been using dilators ever since. I was never even able to have a Q-tip test with out being in agonizing pain and now I'm on the largest dilator in my set with minimal pain. There's a lot more to the story behind the surgery, but that is the condensed version.

Have you considered surgery?
Feel free to ask me any questions...I want to help you as much as I can!

-Jen

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Re: A Combination of Griefs

Post  Sahai on Thu Nov 08, 2012 6:02 am

Hi Jen,

Thank you so much for sharing your story (even if it is condensed!), it really means a lot. I'm glad the surgery worked out for you, but I haven't considered it an option for myself. That may just be because I have been doing ok so far just with physical therapy. Also, I didn't become sexually active until I was 21 due to my upbringing and culture. I viewed sex negatively for the longest time. But life is funny because it wasn't until I turned 21 that I finally found myself on the opposite side of that long-held belief. It took a long time to feel good about sex, and after a few times, I realized something was just not right. It's just like you described-it felt horrible down there. I could only describe it as a knife being pushed in forcibly.

I'm sorry to hear that you spent a long time with the wrong treatment, that's why I truly appreciate how quickly I was able to find help. So far, all that I've needed to do is use the lidocaine and dilators. They have been very helpful. Doing this on my own, I see that I have truly progressed and I can get up to the biggest dilator. But, I've been nervous to go out and actually try again with men. When I was first diagnosed, I couldn't believe it. I didn't want to believe it. I put myself in a risky situation with a guy to try to prove to myself that I was normal. That it was a fluke, nothing, all in my head. And I was proved wrong. It was the worst night of my life, physically and mentally. That's why even though I feel that I may be at this high point in my life, I'm afraid to try again.

In this moment, I feel that if I am able to meet an incredible guy or even just get a hook up, I will only be a ticking time bomb. A liar. I'm afraid that I won't be able to go through with it and the pain will show up with full force. And I'll feel bad to have gone so far only to push him back. And at times, I get mad at my body for getting aroused when I know it will fail me when the time actually comes.

Okay, I know, I'm placing way too much pressure and catastrophic thinking on this. But, it feels good to at least let it go. On here anyways.

I was just wondering, how are you dealing with the emotional aspects of this? I feel that we might both be at the same 'ok' level in our healing. Would you ever consider hooking up with someone? There are times I just feel like I should because I am young, healthy and now, 'able' to. But I always restrain myself. But even doing that is a bit restricting and hurtful. I'm completely unsure in that area and try my best to just keep busy and not think about it.

I would love to hear your thoughts on this! And I'm glad we are both doing well!

-Sahai

Sahai

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Emotions

Post  jen007 on Thu Nov 08, 2012 2:55 pm

Sahai,

Before I had the surgery I was definitely depressed and very distraught. Now that I've had the surgery I feel like I may be able to put that part of my life behind me. I've been with the same guy for 5 years now and the last time we tried to have sex was 2 years ago. I was advised to wait up to 6 months after the surgery and visit my surgeon till I can try to have sex. I see my surgeon next week so I'm hoping I get the "OK" for sex.

You won't know how sex is going to feel until you try it again. It's going to be hard, but you need to try. That way you'll know what steps you need to take after. If you try and still have pain you need to address it. These things don't go away or get better over time. If you think you are able then by all means go do it! I'd recommend finding a guy you trust and see how it goes. It's the only way you'll truly know. I know how it feels to try to have sex and be disappointed. It's hard and takes a toll on you. Don't keep yourself from being aroused...it's natural and fun! Even if sex doesn't work there's always foreplay!

If you do have sex and it still hurts down there you should talk to your doctor or find a specialist. If you can see Doctor Goldstien I highly recommend him! He's completely changed my life.

I hope I helped you out and let me know if you have any questions or just need someone to talk to!

-Jen


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Re: A Combination of Griefs

Post  Aquarius on Fri Nov 16, 2012 12:36 am

Sahai wrote: I put myself in a risky situation with a guy to try to prove to myself that I was normal.
-Sahai

Wow. Me too. Got drunk and assaulted because I was trying to get the pain over with.

Reading these stories, I cannot believe that I suffered from this from age 13 (tampon) to now (age 49), going to doctor after doctor and being misdiagnosed as nervous or whatever ... I am feeling really a lot of GRIEF and LOSS. pale
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Re: A Combination of Griefs

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