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» VULVODYNIA AND SUICIDE
Yesterday at 11:20 pm by Faezeh

» a video for you guys
Yesterday at 2:53 am by lavrose

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Yesterday at 2:45 am by lavrose

» New and need some help
Fri Feb 23, 2018 1:12 pm by fairlight10

» Acupuncture gave me my life back!
Thu Feb 22, 2018 11:25 pm by Bx11

» Anyone from New Jersey
Thu Feb 22, 2018 10:47 pm by LindafromNJ

» vaginal cream
Thu Feb 22, 2018 10:46 pm by LindafromNJ

» Acupuncture advice please
Thu Feb 22, 2018 2:25 am by ryn207

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

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vaginal cream

Thu Feb 22, 2018 10:46 pm by LindafromNJ

I have been given ABC cream to start using for my condition. This is gabapentin, amitriptyline and baclofen cream. Has anyone tried this. Also has anyone used lidocaine. My doctor told me not to use it. It is so sore at the vaginal opening. Has anyone used it there. Please respond!!

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MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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New to sudden yelps and hops in public...

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New to sudden yelps and hops in public...

Post  Tinabeauxbina on Thu Jan 26, 2012 10:10 am

Pain started in Dec 2011 and I've had it off and on since. Amazing. Who knew what surprizes were in store for so many unsuspecting women. It's my left labia that's affected. The painful area is about the size of a quarter, and there are two things that I do for it when the pain (cigarette burn/razor cut) hits; I am VERY careful with my personal hygiene (wiping/washing) and I use good ol' vaseline to cut down on any friction. I was horrified to read that the painful area can actually increase in size for some sufferers. Besides the pain I find it annoying to be so aware of my vulva all day and into the night for weeks at a time. It's like having a monkey on my head, constantly pulling my hair! Don't get me wrong, I like my vulva, I just don't want to have it on my mind like a bad dye job. Anyone wonder if vulvodynia might be somehow connected to sexual abuse or incest? Just wondering...Tinabeauxbina

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Re: New to sudden yelps and hops in public...

Post  mmorgan on Thu Jan 26, 2012 4:45 pm

There are some "theory's" as to a link with sexual abuse, that the pelvic floor tightens. Have you got your pelvic floor checked?
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Re: Pelvic floor...

Post  Tinabeauxbina on Fri Jan 27, 2012 2:41 am

Pelvic floor...loose or tight...my Doc says mine is loose. And thanks for answering! Smile

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Re: New to sudden yelps and hops in public...

Post  lolainslacks on Fri Jan 27, 2012 11:22 am

There is a theory that sexual abuse can rewire the brain, so that the nerve centre (the part that deals with pain) no longer works correctly. You associate the general vaginal area with pain and trauma, so the brain tells the nerves they are in pain when they shouldn't be. I personally believe this to be true. Obviously not for all women, because there are a million different causes, but for some I think this is accurate.

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Topic review

Post  Tinabeauxbina on Fri Jan 27, 2012 8:02 pm

Well, this theory certainly explains why merely wiping myself with toilet paper feels identical to the sensation of my father grinding his whiskery saturday chin into my three year old vulva. It also explains why I can tolerate such extremely painful sensations with a kind of grin and bear it attitude, since I learned how to do so at a very early age. Incest is the gift that keeps on giving. Yes, there are a million different causes for vulvodynia, but for me the links to sexual abuse speak the loudest. Some of the women on this forum have written about having painful vulvas since childhood and that their daughters are experiencing vulva pain at a very young age; I hope for the best, but have to wonder about sexual abuses ugly head rising in their lives. I thank you very much for sharing this with me, Lolainslacks. I consider you to be a friend. sincerely, Tinabeauxbina

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Re: New to sudden yelps and hops in public...

Post  lolainslacks on Fri Jan 27, 2012 9:50 pm

Aw, you're so welcome! I think it's the cause of mine, which sucks, because it's like, when you've suffered abuse you already have a ton to deal with emotionally, but on top of that sex continues to be traumatic because of the pain. I've read dozens of theories but none of the suggestions that work for others (such as cutting out certain foods, stopping use of chemicals, or going to physiotherapy, etc) have helped me at all. And my pain is only on contact, mostly internally. Like you said, this theory is the one that jumps out at me. I've read quite a lot about it and it seems really applicable.

I'm sorry to hear that you also had to endure something so awful.

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Re: New to sudden yelps and hops in public...

Post  Tinabeauxbina on Fri Jan 27, 2012 11:03 pm

I'm sorry you experienced sexual abuse, too. I read about the different treatments and surgeries for vulvodynia, and the thought of surgery makes my hair stand straight up. It's beyond my strength to allow anyone near my vulva with their hands and knives and eyes...I'm a total control freak about my body; even taking care of it with a normal pelvic and pap is a mental and emotional wrestling match. My Doc is a female and understands how I feel, but she doesn't cut me any slack and insists that I can and will have yearly exams, and so I do. But, man, it's tough! It's like I have to put medical care into a compartment all on its own to be able to handle it at all. That's why vaseline and toughing out the pain are my treatments of choice since I can do it on my own and feel some control. Pain is an old familiar friend, after all. You have opened my eyes to the fact that internal vaginal pain is not a normal experience. I have always had painful sex; it's the vulva pain that's new.

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Re: New to sudden yelps and hops in public...

Post  lolainslacks on Sat Jan 28, 2012 12:14 am

I totally understand that, medical examinations are a nightmare for me too. I am not sexually active, and have never been because the pain has always been so bad that sex has never been possible, so I have never had a pap smear, but any other check-up is horrible. Physio was so hard for me because I too am terrible at letting anyone near that part of me.

I have only very recently started talking about my abuse. Before a month or so ago I had never ever told anyone, even online, because I just didn't want to think about it, so it's still difficult for me to talk about in person. Which means that I haven't been able to tell any of my doctors. They know about my pain so they are careful with me, but I suppose they would be more understanding of my reluctance to be touched if I told them everything. Maybe one day.

Have you tried using a lidocaine gel/ointment? I use it and it is an absolute miracle product for me because it removes ALL of my pain. When I apply it before using dilators, I can use all of the dilators, even the biggest ones, which means that in the future, pain-free sex might be possible. It's great because you apply it yourself like the vaseline, meaning you can go at your own pace and no-one else has to be involved.

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Re: New to sudden yelps and hops in public...

Post  Tinabeauxbina on Sat Jan 28, 2012 6:19 am

Lidocaine gel/ointment...it does sound like it could be a workable solution. I never thought of it as usable on mucus membranes however, because of the possible absorbtion of too much lidocaine: is it safe? It has a big warning about absorbtion; how much and how often can it be used? How long does the pain easing effect last? Is it a new product? Did your Doc give you a prescription for it? Does it cost much? Do you have a male or female Doc?

If I may ask, are you in therapy for the abuse? Therapy helped me a lot, especially with communication. For me, the hard part about therapy wasn't remembering and talking about the actual abuse itself. For me, the hard part was clearly looking with open eyes at just what damage had been done to my life, how pervasive sexual abuse is and how far reaching into my mind, body and spirit the damage is. Amazing. I've been sexually active since I was three. Kinda early, if you ask me, but nobody bothered to ask, least of all my father. I'm not sexually active now, either, and discomfort certainly has a part in it.

Question Dilators? Question

I'm open to talk about any subject, but I'm also respectful of other peoples limits; if you do not care to discuss a subject let me know and I will respect your request without questions and without judgement, ok? Other peoples lives are none of my business unless they want to share. silent

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Re: New to sudden yelps and hops in public...

Post  lolainslacks on Sat Jan 28, 2012 8:59 pm

I don't mind sharing here. It's fine for me, because we're not face to face, and we are all here for intimate pain so I trust you guys. I'm comfortable talking about anything with you all.

I'm not currently in therapy. My local rape crisis centre offers free counselling for anyone who has been abused, and I went to one session a few weeks ago. It was arranged that I would go back weekly for as long as I need, but I haven't been back since. It was really great, the therapist was lovely and it was all fine. But I just felt overwhelmed. I have never spoken about it out loud in detail before, and I think in the first session I was in such a rush to just get it all out that I said too much too fast, and afterwards felt really weird and uncomfortable. I plan to go back in a while, when I'm ready. But right now I don't feel like I can talk about it face to face with anyone.

Dilators, yes, I use them sometimes. They look like this -- http://www.soulsourceenterprises.com/images/ordering/orderpic_sm.jpg

You just lubricate them, then insert the smallest one, and sit with it there inside you for a while breathing deeply and trying to relax. Then once you're comfortable with it and it doesn't hurt, you move on to the next one, gradually getting bigger over a long period of time. They are used to allow the body to get used to penetration, and primarily they help women who have problems with muscle tension as a result of expecting pain. They start out as small as your pinky-finger, and get to about as large as the average male. I have been using them for about a year. I was told to use them back when my doctor thought my problem was 'all in my head'. I don't have problems with muscle tension anymore, and I use them only very occaisionally now, just to keep my body used to the feeling so that when I do start having sex, it's not too much of a struggle.

The lidocaine is amazing, but I use a very specific type that I think might only be available in the UK. It's called 'Instillagel'. I get it prescribed. I have to use this as opposed to the actual lidocaine ointment, because that stuff is no longer available where I live. Instillagel is a similar type of thing, just a numbing gel that is mostly used by doctors before catheterisation. My gyn gave it to me originally, and many women in the UK with vulvodnia are being given it to use, so I'm sure it's safe. You should ask your doctor about it, or about any other kind of lidocaine ointment. She will be able to answer all of your questions. I have been using HUGE amounts of the gel for months and months now, with no problems. Unfortunately, some women so react badly to it, but it all depends on the individual.

I apply it, then wait five minutes, and then my pain is gone. I am pain free for around two/three hours. I really recommend giving it a try.

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Re: New to sudden yelps and hops in public...

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