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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


New to Group, scared and depressed

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New to Group, scared and depressed

Post  Coldchris on Thu Jun 09, 2011 6:29 pm

Hi Everyone:

So glad to have found this site. This is my story. I had an UTI. After UTI, yeast infection, treated by diflucan, cream and OTC monistat. Did not get better. Many trips to dr. Treated shabbily. Went to Seattle (I live in Alaska) to a specialist who said I had a hyperimmune response to the yeast and had swelling and inflammation. Got some cream to use 2xs a day for 6 weeks to help get it in check. Mid way through, got an absessed tooth and had to go back on antibiotics (still on them). Had antibiotics (pro biotics to balance them), vicodin, advil, tooth numbing injections, etc. Urine was like acid I bet and really irriated the heck out of inflammed vestibule. Sitz baths and keep on the cream. Started using domeboro sitz baths but I think this may be trying out the rest of my skin. (Has anyone tried Aveeno?) I am struggling with this and feels like it just keeps coming. I'm scared, depressed and feel very alone. Go back to specialist next Wednesday. Did anyone else feel so overwhelmed and depressed?

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Forgot to Add

Post  Coldchris on Thu Jun 09, 2011 6:33 pm

Pain is in my vestibule. Was like razors, but the sitz baths seem to be helping, but seem to be itching on lips now. I'm about to have my period, does anyone else have flare ups around this time?

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Re: New to Group, scared and depressed

Post  Sebby (Admin) on Thu Jun 09, 2011 7:29 pm


Welcome to the forum and hope you feel you can let out your feelings on here

I was recommended Aveeno by the Vulval dermotologist..am gonna deff try it. Got a huge bottle. She said that it helps to moisturise the area and get the vulvar used to touch and calm the nerve endings down.

Myself and if not every member has at some point felt extremley low and depressed. I didnt want to go on anymore. It is also a very isolating condition which is why I set up the forum in the first place. I'm sure if we all had sore and painful arms or legs we would feel more able to talk about it with others but because it is our sexual organ it feels so taboo to talk about!

Your not alone with us and if you wish we also have a secret facebook group you can join. Posts do not appear on your profile or newsfeed

Let us know how the steriod cream goes and try anything you feel may help you. A lot of this is trial and error and wading through tons of creams, meds etc until we can find the right combination.

Do not give up...I am managing better than ever now. Am on 300mg pregabalin and biofeedback as mine is most deff due to an unstable pelvic floor. I have even managed to start having sex again..so remember we can get better




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Re: New to Group, scared and depressed

Post  Sebby (Admin) on Thu Jun 09, 2011 7:33 pm


Oh forgot to mention..I deff get flare ups just before my period and then around the middle to the end. This is very common in women with V. I think it is a combination of the hormones, womb cramps (im sure they gotta effect the pelvic floor) and the pads/tampons we have to use.

I use the softest pads I can find. The Always silk or Boots cottons seem to work best.

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Re: New to Group, scared and depressed

Post  Sarah001 on Thu Jun 09, 2011 7:36 pm

Yep the antibiotics, yeast treatment, UTI all sound alot like how some of us started with this. I for one got to the point where I didn't know how to go on with this pretty quickly but found learning alot about the subject helped. Read books such as Amy Stein Heal Pelvic Pain or When Sex Hurts and you'll soon see you're far from alone in this. Definitely get your pelvic floor checked too, I've been doing something recently to my tight pelvic floor that helps quite a bit so like Sebby I'm in the hypertonic pelvic floor group.

And Sebby, holy moly you're having sex now? Fantastic! If I get to that stage I'm wondering where I'll find someone to actually have sex with! Laughing
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Re: New to Group, scared and depressed

Post  Sebby (Admin) on Thu Jun 09, 2011 7:47 pm


Yeah, I found a fella! ...really dunno how I did that! Well actually we were flirting at work and I drunk texted him one evening and it all went from there lol

We only had sex a few times but I am managing to relax more and more. I still havent got hold of the new biofeedback sensor. Havent got back to Dr Glazer yet to say it not turned up yet.. yeah its naughty of me..the boyfriend kind of distracted me!

I did tell him I get pain etc and explained I couldnt always have sex etc...he dont seem to mind anyway and he like the kindest man I have ever met!

cheers


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Re: New to Group, scared and depressed

Post  gem123 on Thu Jun 09, 2011 8:16 pm

hi i have just got back from a appt with a dermotologist and she has also said the same to me about thrush so i will be starting of a 3 mth treatment soon, i know how you feel i have been really down the last few weeks but i am feeling a bit more positive i have just ordered the aveeno oatmeal satchets to try i will let you know what there like, i just wanted to say you are not alone and thinking about you

gem xx

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I think we have all been there

Post  annaCA on Thu Jun 09, 2011 8:56 pm

I think we have all felt depressed, lonely, and fear that the pain will get worst. I know I felt it this past week as on top of v, I got a possible uti and have cramps from my period. I definitely get worst right before my period and right after. It is pretty exhausting going to all the doctor appointments and trying out new medication and dealing with the side effects. This board has definitely helped me even just by reading other people's posts and knowing I am not alone in this and that although we each have a different story, we have a lot of similarities. It was really helpful for me knowing I wasn't a freak and that more people than you think have this condition. I am trying to take each day as it comes which I feel is harder than it sounds. Hope you are feeling better!

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Re: New to Group, scared and depressed

Post  Coldchris on Thu Jun 09, 2011 9:51 pm

This just feels like hell mentally and physically. It has knocked me for a loop. It's just too much. I am normally happy and outgoing, but this is making my life miserable. I work full time, have a five year old son (very best thing), a supportive husband, but how much more can I do here? I'm trying things, following doctor's orders, and I'm just feel beaten.

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Re: New to Group, scared and depressed

Post  Coldchris on Fri Jun 10, 2011 12:30 am

Would love to join facebook group, sebby! Love it.

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Re: New to Group, scared and depressed

Post  Sebby (Admin) on Fri Jun 10, 2011 7:25 am


I have inboxed you with details regarding the facebook group Smile

Take one day at a time, sometimes thats all we can do and know that when we get the real bad flare ups it will calm down..Im on my period at the moment and OUCH! I cant use the softer pads at the moment as I am real heavy and these big old pads are rubbing! Shocked

In the meantime we can at least support each other and have an outlet for our feelings knowing that others know exactly how you feel Smile




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It's ok!

Post  Louise on Tue Jun 14, 2011 10:57 pm

We are all here for you & yes your story sounds a lot like how mine started! You are not alone I can totally relate to how you feel ! x x x

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Re: New to Group, scared and depressed

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