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» Will there be an end?
Today at 12:06 am by Krista2828

» you can be healed so easy and quite fast.
Yesterday at 11:46 pm by pussycat

» What's next?
Tue Apr 24, 2018 4:01 pm by jennyk2

» Pain management - what works for me
Tue Apr 24, 2018 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

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you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 0

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0


New member from US

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New member from US

Post  coralburn on Fri Mar 18, 2011 1:28 am

Hey everyone! I'm new here. I'm 21 and I've had vulvodynia for my entire life, but I was just diagnosed a few months ago (despite suffering through numerous gynecological exams from doctors who seemed more annoyed with my pain than anything, but that's a subject for another post). I've been treating it with lidocaine gel and with NSAIDS. Neither method works very well, but they definitely help, and I'm optimistic that I'll find a solution in the future.

I have fairly bad vulvodynia pain, though. Vaginal penetration is completely unthinkable for me right now, and being touched sexually is usually hard for me to handle (even on days where I use lidocaine and take NSAIDS and tylenol). I've never had a full pelvic exam because of my pain, and I've had to be sedated for minor procedures such as lynching cysts. The only thing that ever completely helped my pain was taking hydrocodone at the ER, but obviously that's not a good long-term solution... I also have chronic joint pain and chronic migraines, so I'm really sick of being in pain at this point.

Before I was diagnosed, I didn't even know that vulvodynia existed, so I'm pretty pumped that this forum is active! Very Happy

PS: I'm starting a blog about having a healthy sexuality for people who can't have intercourse and people with vulvodynia. It's pretty new, but feel free to check it out: http://sexwithoutpiv.blogspot.com/ (NSFW)

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Re: New member from US

Post  Mouse on Fri Mar 18, 2011 1:52 am

Hi Coral,

Welcome! What a great blog. I never knew what PIV was!

I posted an article on here a few weeks back about outercourse, it's a much better way for girls anyway.

What are doing to heal your V? The usual stuff we talk about it is PT, meds (if you can tolerate them), therapy - that's a must, this is crazy stuff to deal with every day, good support, staying social (very tricky when you feel like cak), being kind to yourself, diet, exercise, getting your head in the right place and all the good stuff in life.

Good luck with the blog. We are on FB also, it's private and doesn't post to your wall. email Sebby if you want to come over.

Take care
Vicki

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Re: New member from US

Post  coralburn on Fri Mar 18, 2011 2:06 am

Vicki,

Thanks! The nurse practitioner I'm seeing for my vulvodynia wants me to get physical therapy eventually, but doesn't think I'm ready yet, so I'm just starting off on meds. I also made an appointment to get sex therapy, which should be interesting... I think I probably need normal therapy too with everything going on in my life, though. And I hadn't even thought about how staying social, exercising, etc could be important in healing. Thanks for the advice!

Coral

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Re: New member from US

Post  Mouse on Fri Mar 18, 2011 2:27 am

Hey Coral!

Nice to meet you.

Now my therapist is a sex therapist. My initial gyny had no idea what vulvodynia was (imagine that!!!) so said (via her receptionist) use evening primrose oil and find a sex therapist ggrrr I still scowl in her direction every time I drive past. She was a stupid bitch! But I was desperate so sent off an angry email to the sex therapist who writes for the Sunday paper and the rest is history. She is amazing and I don't think I need any other type of therapy as well. She is a psychologist who specialises in sexual problems. You couldn't get a bigger sex problem than this one. Well actually you could but this is our show Smile

They are fairly keen on creating a sex positive world. Well that never occurred to me till this came along. It's a whole new world!

I think our challenge is to heal the whole body. I'm more inclined to look at everything I put in my body or do to it than look for another pill or potion now. It fascinates me that people on the celiac forum I'm also on whine about how they can't heal but still eat processed foods that are not completely GF in most of the world. They are in NZ but they are also full of fat and sugar. I mean if you are reading the bloody label to check for gluten check out the fat content at the same time. I was the biggest sugar addict six months ago but have realised I need to heal so it's worth the effort. Sugar is acidic and I want to stop the burn.

Do you feel like you are ready for PT? I think you also need to take control of your own path. You will end up knowing more than most of the experts eventually. When you live this you have a different perspective. There is no set formula and everyone responds differently. It's difficult to find two people with the same symptoms but we all have little pearls of wisdom. Yes I am 95 Smile

V.


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Re: New member from US

Post  Sebby (Admin) on Sat Mar 19, 2011 8:51 pm


Welcome Coral to the forum.

Firstly I have to say I'm really impressed with your blog and have it on my favorites Smile

I have had some form of V since I was a teenager. I have had relationships and intercourse but it was always painful and I just thought it was anxiety. It was only when I devolped constant pain and sex became something I couldnt bear to think about that I made the link.

I am currently doing biofeedback home training as prescribed by Dr Glazer author of 'The Vulvodynia Survival Guide' and part of my treatment is to start masterbating again! so i've ordered another vibrator as my one made my clit sore lol I have to calm it down a bit I think. I was only doing it 3 times a week like prescribed!

Part of my prescription is also to start dating again. This one I have not taken up just yet as I am very scared. I keep thinking Im a women who at the moment cant have intercourse plus I have anxiety and panic attacks. Who would want me! Mum says I just focus on the negative parts and that is not all who I am. I have to agree with her but it is so hard to think positive sometimes.

So keep blogging and I'll keep reading Smile


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Re: New member from US

Post  noni on Sun Mar 20, 2011 3:30 am

Hey Coral!

Youve come to the right place!!! I really have Sebby and the other ladies to thank for saving my sanity!!!

A little bit about me: Im 23, am on Elavil (Amitriptyline) 30mg (have worked my way up), will soon try dilators, and I am really looking into Physical Therapy for the pelvic floor muscles, a radical diet change (limit sugar, salt, caffeine, no alcohol/cigarettes)

Coral, there are so many ups and downs with this. But by far the best source for support and advice is right on this forum!!!

My specialist appointment at the Vulva Clinic is at the end of this month. Im sooo anxious its killing me!! Eeek.

Smile Anyways....take care Smile

noni



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Re: New member from US

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