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» Scarleteen Boards: 2000 - 2014 (Archive) » SCARLETEEN CENTRAL » Bodies » Vulva Vestibulitis

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Author Topic: Vulva Vestibulitis
Saffron Raymie
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Lauren, thank you, thank you, for your article. I got Vulvavestibulitis at about eleven years old and was told by about twenty different doctors that it was thrush, or an STI (I ruled this out because I got it at eleven) It went away when I was 20 (I'm 23 now), but, every so often, it would come back. I never had treatment.I couldn't sit. Fluffy chairs were my enemy and I passed out from sitting at college and passed out again in drama because the tampon felt like it was tearing me apart. I felt like I was in hell.

I thought it was thrush because I'd heard women say thrush was horrible and burny. Then I actually got thrush. I realised the difference. Thrush wasn't going to the toilets at work and locking myself in and laying down without clothes and crying. Thrush wasn't wishing to be unconscious because of the pain. I just called it 'that scary burning thing'.

The thing is, does anyone know it will come back? I thought it was something I had to live with. It's been gone for 3 years, but I've been living in fear. Will it, can it, come back? Should I get help? Should I just keep an eye out?

I sympathise with you so much. It's excruiating.

More questions, sorry: are vulvadynia and vulvar vestibulitis the same thing? What is VSS? Are there more conditions than one? How do I know what mine was? Does 'dynia' really mean in the head?! How awful! What is the best/ medically preffered term?

[ 06-03-2011, 08:44 AM: Message edited by: RaeRay2112 ]

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'Obtain the virgin's consent before you marry her' - Prophet Mohammad (pbuh)

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Heather
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Did you ever actually get a diagnosis of having vulvar vestibulitis or vulvodynia (vulvar vestibulitis is localized vulvodynia, to answer your question: IOW, it's a subset)?

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Heather Corinna, Executive Director & Founder, Scarleteen
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Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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Saffron Raymie
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No, I read about it a few years ago, and thought that it described what I had.

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'Obtain the virgin's consent before you marry her' - Prophet Mohammad (pbuh)

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Heather
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The thing is, without actually knowing if it is what you had, and what your diagnosis and treatment was, I just can't answer the kinds of questions that you asked.

However, to my understanding, unless it is caused by an irritant which is removed/no longer present, it just going away without any kind of treatment is highly unlikely, so it's probably not what you had.

However, your best bet is to talk to a gynecologist about it and see what they have to say.

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Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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Saffron Raymie
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Thank Heather [Smile]

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'Obtain the virgin's consent before you marry her' - Prophet Mohammad (pbuh)

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Heather
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If you want more info on it, I'd check out these links (but again, Dr. Google tends to be unreliable, so seeing an actual physician is your better bet):
http://www.acog.org/publications/patient_education/bp127.cfm
http://www.nva.org/
http://www.vulvalpainsociety.org/

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Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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Saffron Raymie
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I think it was caused by using shampoo as bubble bath all the time when I was younger, maybe I caused pain that way?

But, I know how problematic self-diagnosis is, so I'll make an appointment with a gyn.

[ 06-03-2011, 10:17 AM: Message edited by: RaeRay2112 ]

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'Obtain the virgin's consent before you marry her' - Prophet Mohammad (pbuh)

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Heather
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Or, as suggested, you may have had chronic thrush. And for sure, having an allergy or sensitivity to something and continuing to use it could very well have also been the culprit.

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Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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Saffron Raymie
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Ah, I didn't not trust them, but I ruled out thrush when I found out what thrush was (by getting it) because with what I had, the very thought of itching was unbarable and felt no need to itch it ever. There was also no discharge of any kind at all, and it was extremely dry, and all the thrush treatments made it worse, and sitting down was really painfully and burny.

Chronic thursh may be different though, I'll read up on thrush.

It really was painful, felt like a serious burn, no matter how happy and unstressed I was, but allergy can cause a burning feeling.

Thanks agaian, and sorry to treat you like a dr, I'll make an appointment [Smile]

[ 06-03-2011, 10:43 AM: Message edited by: RaeRay2112 ]

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'Obtain the virgin's consent before you marry her' - Prophet Mohammad (pbuh)

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Heather
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Lichen is another possibility.

The thing is, even with a doctor, you have to know that it's going to be very difficult, if not impossible, for someone to diagnose something after-the-fact.

In other words, if you haven't had any of these symptoms for years, there's not going to be anything for them to look at/evaluate now.

What they might be able to do, however, is look at your past records from all those doctor visits and come up with a theory.

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Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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Saffron Raymie
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I really, really didn't mean to make it sound like I didn't trust doctors or imply that doctors didn't care about vulvas.

Sure, about twenty of them over a decade told me it was thrush, but only because I self-diagnosed it as thrush before I even had any appointments. I just said 'hi I have thrush, how do I make it stop?' I also said yes untruthfully to all their questions about thrush because I was so embarrased, gave me Canasten and that was it. One even said come back if symptoms persist but I was too embrassed to talk to them directly, and to say 'my vulva feels burny' back then, in case they wanted to look, and that means they couldn't really help too much, and probably would have a hard time coming up with a theory about my past health.

I was angry in my first post, but more for Lauren than me. My situation was different. I became adamant it wasn't thrush because it was me who diagnosed it in the first place. I then decided it wasn't, then read up on lots of conditions, before I found Scarleteen, and vulva vestibulitis seemed to fit best with the burning and tearing feeling when I sat (apart from clearing itself up, as you said). However, as I learnt with thrush, self-diagnosis is always a bad idea, as you said with Dr Google.

I'll go be clearer with a Doc anytime I have any vulva or vaginal pain from now on. Thanks for helping me see this!

[ 06-03-2011, 01:31 PM: Message edited by: RaeRay2112 ]

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'Obtain the virgin's consent before you marry her' - Prophet Mohammad (pbuh)

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Heather
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No worries, seriously. I didn't take it that way, and you know, just like with every other field, not all doctors ARE great doctors.

That said, for sure, if you never actually got examined, yet again, it'd have been very tough for anyone to know what was going on. As well, if you were taking meds for thrush when you didn't have it, that can create its own problems for your vulva.

--------------------
Heather Corinna, Executive Director & Founder, Scarleteen
About Me Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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