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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?
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» 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


Looking For Answers. Comparing Notes.

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Looking For Answers. Comparing Notes.

Post  BpCookie on Wed Feb 20, 2013 10:58 pm

I have Lichen Simplex Chronicus which pretty much causes the same symptoms as Vulvodynia. My Gyno's some times calls it Vulvodynia. I wanted to ask a few questions to see if any one has any of these things in common.

1. peri menopause, menopause or hormone problems?

2. has anyone had a uterine ablation done?

3. any STD's? (I had vaginal warts and my dr. froze them off, three damn times. I still have scaring)

4. use a vibrator before all of this happened?

5. Problems with a lot of yeast infections?

6. Problems with lots of UTI's?

7. Any back pain issues before all of this started?

Take care everyone and keep sitting on those ice packs.

hugs

The burning bush
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Re: Looking For Answers. Comparing Notes.

Post  Alana3 on Thu Feb 21, 2013 11:19 am

I had yeast, uti and back pain

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Re: Looking For Answers. Comparing Notes.

Post  BpCookie on Thu Feb 21, 2013 4:01 pm

Hey Alana hun, no hormone problems? Like messed up periods, skipping periods or having them too often? Just wondering. Also, did you have back problems before all of this happened or after? Before the Vulvodynia, my upper back and neck hurt, then about one year after I got this, my lower back and tail bone started hurting. I think the lower back is due to how I sit because it hurts too much to sit the way that I normally would.
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Re: Looking For Answers. Comparing Notes.

Post  Alana3 on Thu Feb 21, 2013 4:31 pm

I mean my periods were crazy before I got on birth control, but I was 14 when I got put on it and haven't been off since and I'm 27 now. But, my periods were crazy and super heavy, but its apparently a very common problem and supposedly changes after you go thru puberty, but I like my pill too much to get off it. My periods screwed up after my vestibulectomy and I was on BC, but it was because of anaesthesia. Its back to normal now, thankfully. I have tight muscles, and my lower back and hip hurt pretty bad especially right before my period- but I have to say I am a very active person, I horseback ride, workout, yoga, zumba, etc, so I don't really know what is connected and what isn't. Have you done acupuncture? It works so well!



I seriously don't think you're going to find the why to your problem, I finally just accepted it, it would be like trying to figure out why someone got Leukemia or Lupus or something. They're both terrible, but there's probably not an answer to the problem. But more importantly, there is a fix. I would think that would drive me crazy thinking everything causes it. And honestly, there's nothing you can do about it, shoot for a cure, not the why's.

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Re: Looking For Answers. Comparing Notes.

Post  Alana3 on Thu Feb 21, 2013 4:36 pm

And that last part wasnt meant as bitchy, I'm like an hour before my periods coming and my hooha is on fire what a terrible feeling, I hate my vag!

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Re: Looking For Answers. Comparing Notes.

Post  Kathy100 on Fri Feb 22, 2013 12:47 pm

Hi,

1. Yes - have breakthrough bleeds (even thou on pill) which last about a week - moods go haywire & feel very tired. After doing ultrasound /hysterscopy / smear - gynae now thinks hormonal - possible start of menopause. I'm 47. Happy days.....

No STDS or yeast infections.

4. Yes - but not internally.

6. Problems with UTIs (but tests always clear) & pain with sex long before I was diagnosed & told all in my head.

7. Used to get pain in shoulders & neck before it started but think that was down to sitting in front of PC all day. Now get muscular pain in tailbone, across backside and down my legs...am doing stretches for this which help. Lower back is starting to hurt too... The pain is worse around the breakthrough bleed time. I was pretty active before this started zumba, gym etc. Now I don't have energy to get through Zumba class ... Got an appointment at the pain clinic today so am hoping to get some answers. The specialist I saw thinks mine all started with IBS, aggravated by the UTIs and gradually got worse so now my whole pelvis is clenched up which is causing all the pain.

Take care & good luck xx

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Re: Looking For Answers. Comparing Notes.

Post  Kathye10 on Fri Feb 22, 2013 5:22 pm

The Burning Bush....That's what I call myself at this point...haha.

1.) Not sure, haven't had my hormone levels checked yet.
2.) No
3.) No, but I've showed positive (recently) for a few different types of bacteria which were treated by numerous antibiotics, externally and oral pill form.
4.) Externally
5.) I get yeast infections once every few years, but nothing a 3 day treatment didn't cure.
6.) Never had one before (thankfully)
7.) Always had lower back problems. Core is not strengthened at ALL, which I believe is why my back is so messed up

I know V is not the a "cause", it's a symptom of something deeper. I am going to see a specialist in a few weeks to try to pin point what might be the cause. I'm going to assume it's either over medication and my nerves decided to have a party down there when no one invited them OR from all of the pain, my pelvic floor muscles have tightened so badly that this is my "cause."

It seems like the women who finally pin point the cause usually get better or make a full recovery. I'm wishing that for ALL of us! Very Happy
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Re: Looking For Answers. Comparing Notes.

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