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» What's next?
Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 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

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

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

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 …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


Feeling hopeless

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Feeling hopeless

Post  Delilah1 on Mon May 13, 2013 4:05 pm

Hello Ladies. I'm feeling kind of hopeless today. I visit the forum everyday in hopes of reading someone's story of feeling good again. Does this ever go away? Is there anyone out there who developed secondary vulvodynia and now feels healthy and pain free again? If I ever feel "normal" again I will not forget to come back to this forum and share my story. Thanks for listening!

Delilah1

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Re: Feeling hopeless

Post  Alana3 on Mon May 13, 2013 5:16 pm

I had provoked vestibulodynia and I will tell you that I am considered cured and feeling awesome! It took a while to find the doctor that worked for me, a lot of them thought it was in my head, but it wasn't as you well know. This past October I found a doctor in South Florida that was able to see where the pain was and better yet to show me. He told me I had 3 options and that he wanted to work from cheapest to most expensive. The 3 options were: 1. a compounded cream of amitryptaline, gabapentin and lidocaine (sorry if these are spelled wrong) 2. physical therapy (I was already participating in it) and 3. Surgery known as a vestibulectomy. I tired the first two and they worked for about 6 weeks and than the pain came back. While I was being treated for this he discovered I had strep which I was also treated for with antibiotics (and as far as I know that's gone). After 6 weeks went by, the pain came back I was so depressed because I didn't think I could be cured. Finally, I went back in and he said that I needed to do the surgery. You can imagine how much trepedition I felt when I heard that. I had to schedule it in December because I had stuff to do with work and personal trips that had already been paid for. December 5th was my surgery date you have no idea how bad I flipped out right before, but all I can tell you is that it certainly wasn't as bad as I thought and I am SO HAPPY I did it. The recovery was 6 weeks, and mixed emotions because you feel what feels like vulvodynia, except its just the nerves reknitting it was beyond scary! But at my 6 week mark (actually 2 days before!) he did the dreaded qtip test AND put a finger up in there and there was ABSOLUTELY NO pain!!! I sometimes get a little uncomfortablness on my right side but it's very managable and usually due to muscle spasm. I don't know if you're a candidate for surgery, but the reason I am telling you this is because there IS proof of making a recovery, I am proof of that. Make sure to find a doctor who is well known in vulvodynia. I typed "vulvodynia specailists in South Florida" into google, and my doctors name came up. I am so thankful everyday that I found him beacuse he truly saved my life. Everyday was in pain, my lunch breaks were in the shower, I was depressed and moping and finally found a "cure" or at least no more pain. Take a deep breath and start your search, it takes times and patience, and make sure to go over everything with your doc so that you make sure you are both on the same page. Nothing is more frustrating than when you think you understand something and realize later it wasn't what you really thought. Been there done that ugh! I would say I'm about 98% better Smile I will tell you though that I do work with a dilator (actually my vibrator) and I still see my physical therapist but only every other week now and sometimes I can do every 2 weeks depending, but it was well worth it!

Alana3

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Re: Feeling hopeless

Post  Delilah1 on Mon May 13, 2013 6:06 pm

Thank you for your reply Alana! It's so good to hear a success story! I am so happy that you found relief from this horrible condition. When did your V start? Were you ever able to use tampons, have exams or pain free sex? All this started out of the blue one day for me. Sex, exams and tampons have always been comfortable until now. I do have an appointment with a vulvar specialist at the end of June. It was a 3 month wait for an appointment! I am happy for you! Thank you for sharing your success on this forum!

Delilah1

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Re: Feeling hopeless

Post  Alana3 on Mon May 13, 2013 6:29 pm

Who's your specialist? Yeah, I could have sex comfortably but not exams or tampons, than one day sex got bad and it continued to get bad and NO one could tell me what was wrong, it was horrible Sad Where are you from?

Alana3

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Re: Feeling hopeless

Post  Delilah1 on Tue May 14, 2013 12:13 am

I am from St. Louis, Mo. I'm going to the Vulvar and Vaginal Disorders Specialty Center in St. Louis.
It's been a long wait!

Delilah1

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Re: Feeling hopeless

Post  Alana3 on Tue May 14, 2013 1:19 am

It'll be worth it

Alana3

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Re: Feeling hopeless

Post  ellie12 on Sat May 18, 2013 4:08 pm

I have found ways of managing my secondary vulvodynia using Lidocaine which is a topical anaesthetic. Ask your specialist about it because after months of using it I was finally able to start having sex with my partner again.

ellie12

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It gets better

Post  Rainy Day on Tue May 21, 2013 8:59 pm

Yes, you will learn how to manage your condition and resume a somewhat 'normal' life. I was a 10 in pain in the first 9 months probably. Once I learned my triggers, what meds work, what therapy works, I am a 1 in pain most days...unless I flare. But, I am learning to control my flares now too. It gets better, but it takes a long time to figure it out!

Rainy Day

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Re: Feeling hopeless

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