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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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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: 8

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

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: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

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 …

Comments: 6

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: 4

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


New here, diagnosed 2 years ago

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New here, diagnosed 2 years ago

Post  mythreesons on Wed Jul 30, 2014 8:17 pm

I'm Teri from Alberta, Canada. I was diagnosed with Vulvodynia 2 years ago after 2 months of terrible burning pain that doctors could find no reason for. I started taking Elavil (30 mg per day) and Vagifem 2 times/week. That kept symptoms mostly under control for almost 2 full years. About 6 weeks ago, I started my first major flare-up for reasons unknown and can't seem to get it under control again. My doctor is very uneducated on this condition and I'm in the process of trying to find a new doctor.

I'm trying to follow the low oxalate diet, but have found conflicting info on it. Some sites list certain foods that are okay while other sites say to avoid. How do I know which list to follow? I've also been taking calcium citrate for about 3 weeks (1200 mg per day). I've had some improvement since the start of this flare-up, but I'm a very long way from total relief. Some days are much worse than others. I'm feeling very lost.

mythreesons

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Re: New here, diagnosed 2 years ago

Post  zarli on Thu Jul 31, 2014 6:13 am

It is so hard and understandable that you are feeling lost. You have been going through this for2 years. Keep researching doctors in your area you will find one that helps it can be along process. It is great that something worked for 2 years that means something will work again you might need your meds updated. Kind thoughts sent your way

zarli

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Re: New here, diagnosed 2 years ago

Post  Alana3 on Thu Jul 31, 2014 1:08 pm

I am not sure about the oxalate diet.  But there is a website solely for the purpose of vulvodynia.  (vulvodynia.com I think) I would go with what they say! Low to NO sugar, no yeast, it's pretty much a gluten free diet.  I couldn't do it I love food too much!  Maybe you should do a cleanse and then slowly add food back in your diet and see what effects you!

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Re: New here, diagnosed 2 years ago

Post  sailor_moon on Thu Jul 31, 2014 9:44 pm

You poor thing! Needless to say you have come to the right place being on here. All the girls are amazing and very informative too Smile

How old are you? What tests and investigations have the doctors actually done on you?
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Re: New here, diagnosed 2 years ago

Post  mythreesons on Sat Aug 02, 2014 12:54 am

Thank you. I am 45. Honestly, nothing has been done since I first started suffering 2 years ago. At that time, my doctor checked my hormone levels, tested me for STD's, yeast and BV. Despite testing negative for yeast, I was put on Fluconazole for a month, which did nothing. My doctor then gave me a steroid cream thinking perhaps I had lichen sclerosis (despite the fact my vulva did not appear as it would if I had this). Didn't help. After everything else failed, I was diagnosed as having vulvodynia. Like I said, treatment worked for 2 years so I've done no further investigating into finding a cause for my symptoms (if a cause can ever be found).

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Re: New here, diagnosed 2 years ago

Post  sailor_moon on Sat Aug 02, 2014 1:04 am

Is your doctor a specialist? A Gynecologist or Vulva specialist? If not you need to find a different doctor who knows what they are doing.

Now, I know what it is like to deal with incompetent doctors, I am seeing a new doctor in 3 days time and I have done my research with hormones! A basic blood test will NOT show a hormone imbalance most of the time. You need to get a special 24hour urine test, saliva test and special blood tests done. I will be asking this new doctor to do this for me because I believe my problem is hormonal.

Have you had a biopsy done? They are nowhere near as bad as people say, I have had 2 done and you literally can not tell where they got done! If you do have lichen sclerosis a biopsy will confirm it.

I have been like this for a year and a half, this new doctor will be doctor number 12! I will not give up until I find a cure for myself!

Do you have any other symptoms? Or are you totally healthy otherwise?
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Re: New here, diagnosed 2 years ago

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