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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


New girl from the states

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New girl from the states

Post  seagirl88 on Mon Mar 14, 2011 5:21 am

Hi everybody. I have been suffering from vulvodynia for as long as I can remember. I am only 22 years old, but I have never lived without intense pain upon penetration (even when I was a young teenager and trying to insert tampons). I am kind of at the end of my rope at this point and I have found it very difficult to get over my spells of depression lately. I am incredibly lonely and I feel absolutely hopeless. I decided to finally join one of these support groups in hopes that I can work through my emotional and physical pain alongside others who understand. This condition is absolutely awful, but I am glad to have found a place with empathetic women who are working hard toward finding a cure! I look forward to sharing stories and treatments with you all.

seagirl88

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Join date : 2011-03-14
Age : 28
Location : Washington, USA

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Re: New girl from the states

Post  naomi on Mon Mar 14, 2011 9:15 am

Hi hun!

Welcome to the forum...you're among friends here so no thinking you are on your own anymore! I felt like that about 2.5/3 years ago and struggled away until I came across this forum cruising the health sites etc for any help I could find. Sebby (admin) is a god send for setting this website up as there seems to be little accessible help out there.

We are all working on this condition together on here.....crap days, crappy days and better days! And believe me we can all relate to the feelings of despair, hopelessness and depression...know that all too well Sad

There are loads of treatments that are possibilties and these are the girls to get to know! Since I joined in July it has been my main place of mental relief.

The regulars on here are a bunch of nutters but completely harmless Smile heheeee, I think they are all lovely and we do have fun on facebook (message Sebby the Admin or me on here and I'll get you on the secret group on facebook where were are all real girls woooooooh Smile there's about 20 of us on there now, all spread across the globe, so there is always someone around to chat to if you are struggling...or talk about general rubbish Smile It is a secret group so no telling the world about ur La-la problems Smile

I hope ur day is good. And dont forget you're not alone in this anymore!!

Naomi xxxxx
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Re: New girl from the states

Post  seagirl88 on Mon Mar 14, 2011 7:12 pm

Thanks so much Naomi! I actually JUST deactivated my Facebook after having it for 5 years because I was finding that it was only bringing me down (i.e. always reading about everybody's perfect lives and love lives). If I decide to reactivate it I'll definitely join the group!

seagirl88

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Re: New girl from the states

Post  Sebby (Admin) on Mon Mar 14, 2011 8:02 pm


Welcome to the forum Smile

Yes we can all relate to how you are feeling. This condition is so isolating as you don't feel able to talk to many about it like you would if your arm hurt!

I too have always had pain witht penetration, during sex, tampon insertion (since I tried at 13) and medical exams. This does not mean that it will be any harder to treat just because you have had it for a long time.

I have dealt with feelings of utter despair and there are days when I just don't feel I have the strength but the women I've met on the forum help to refill my strength bottles..lol I really dont know where I got the term strength bottle!

What treatments have you tried and what treatments are you currently on?

Im going down the route of pelvic floor biofeedback which may take months to take effect but I am plodding on and remaining hopeful

I have also been on 300mg on Pregabalin for about a month and have noticed a reduction in general pain and flare ups last a day or two rather than several days

I am also spraying the vulval area with water after urination and applying vaseline as a barrier against rubbing which Im also finding helpful

If you wish to joing the facebook group you can always set up another fb page even with another name, just to allow access to the group

Take Care


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Re: New girl from the states

Post  seagirl88 on Tue Mar 15, 2011 6:40 am

Thanks Sebby. It's so nice to know that there are other people who are going through the same thing! Also, creating a Facebook account under a different name is a good idea-- I might do that. As far as treatments go, I've had a hard time admitting to myself that this is a problem that isn't going to go away on its own. Therefore, I probably haven't tried nearly as many treatment options as most of you all have. I have definitely gone down the route of oral antifungals a couple of times (because I was either diagnosed with a yeast infection or BV) and those of course didn't do anything. I then used Estrace cream for a while in combination with a steroidal cream, but those didn't do anything either. I JUST finished a treatment prescribed to me by a naturopathic doctor where I douched with chamomile tea and slippery elm bark and vaginally inserted both natural antifungals and probiotics. It may have helped slightly but not significantly.

seagirl88

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Age : 28
Location : Washington, USA

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Re: New girl from the states

Post  Mouse on Wed Mar 16, 2011 8:14 am

Hey hun and welcome!

We're all here to help =) We have a lot of fun on the FB page and it's a great place to have a whinge also! So give that some thought.

It's really easy to get down, this thing can be soul destroying. Have you got a therapist? Mine virtually saved my life, I was circling the drain six months ago. Now I meditate, have radically changed my diet, do PT, aim for good sleep hmm and try to destress - that's a work in progress. Most days it works.

In the mean time do you have a pelvic pain specialist or a vulval specialist? Check out Sebbys consult with Howard Glazer there is really good advice on there.

Sadly there are a lot of women your age on here but all of us are desperately seeking a cure. Making a commitment to finding that is the first step so well done! Ideally living the cure rather than the disease - sounds good in theory doesn't it!

I hope you are having a good day. Take care
Vicki


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Re: New girl from the states

Post  seagirl88 on Wed Mar 16, 2011 7:59 pm

Thanks Vicki! I actually just made an appointment with a therapist for this coming Monday. I've gone to therapists before about dealing with my anxiety and depression, but I've always been too embarrassed to mention my vulvodynia. This time, I'm just going to let it all out! I also booked an 8 hour meditation orientation for the end of May, so hopefully that helps.

Currently I'm still going down the route of diet change (and a possible upcoming detox and candida treatment). My plan is to spend the next 3 or so months doing that. If I don't have any significant improvement I will definitely look into going to a pain or vulva specialist.

Thanks for your support!

seagirl88

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Location : Washington, USA

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Re: New girl from the states

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