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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 …

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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 …

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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 …

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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


My story - please someone help

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My story - please someone help

Post  Roo on Tue May 21, 2013 8:11 pm

Hi,

I have been married for 3 years to a wonderful husband but during all that time we have not been able to have a sexual relationship.
From the first time we tried I felt pain and panicky.
After getting some urine infections and thrush my fear became worse and on top of this I feel pain even when a small amount of pressure is put on the entrance of the vagina.
I have tried lubricants (which sting) and dilators. I struggle to put anything inside due to fear and pain.
On rare occasions when we have got so far with intercourse the pain is so intense I can't go any further.
I have been to the doctor and to a sex therapist which didn't help me.
I am really not sure what to do - does anyone have advice??

Roo

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i wish i could reach and hug you

Post  dreaming@jeans on Mon Jun 03, 2013 5:26 am

I am so sorry to hear about how painful it has been for you. I don't know your age and what you have tried but i have been able to find some relief after 24 years of this living hell. I have a list of problems longer than my arm but this awful pain given to us women just plain sucks more than anything else in my life. I have not been intimate with my husband for 1 year and I miss him so much. You must have a special partner that is no doubt as frustrated as you deep down. I got on hormones years ago after going to many doctors and trying everything (without luck). I know that testosterone was instantly helpful but it is not a long term thing since it can level out. You have to see a compounding specialist for special hormones (creams). I use what's called the Wiley Protocol which I'm sure has a website. A doctor developed it and it is hormone cream. Your vagina is dry and hurting which is similar to going through menopause. I have to pay cash for it since it is compounded by a special pharmacy and not covered by insurance. If you want more info I can help you. I use estrogen and progesterone and they also make testosterone (gave me sex back for a while). I am sorry for your pain. I am sitting here in excruciating pain myself for some reason. I either wore something too tight or ate too many cookies yesterday. I am starting to think there is a connection with the sugar and yeast. This is my very first post btw. I just had to reach out to you. Hope today is better. Sincerely, Julie

dreaming@jeans

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Re: My story - please someone help

Post  jen007 on Mon Jun 03, 2013 11:46 pm

Hello Roo,

I'm sorry to hear about the pain you're feeling. Vulvodynia (VV) is truly a curse. I'm young, but I've tried a lot of things to help ease my pain. Theres a couple of things you can change in your daily routines that may be able to give you some relief. One thing you can try is changing your underwear to 100% cotton. The cotton helps keep moisture away from your "area" keeping it vented. This helps keep the yeast away. Second, you could use un-scented soaps on your "area". I found that using un-scented ivory soap is less irritating on my skin. Most of the time women with VV have delicate/ sensitive skin "down there" and soaps with perfumes can be harsh and cause pain. Third, you can freeze a bottle of water and put it between your legs. I used this when I would get the burning feeling. A water bottle works better than an ice pack because it fits perfectly between the legs, especially a small soda bottle. Fourth, you MUST find a specialist. It's rare that a regular gyno knows anything about VV. I went to about 5 doctors before I found the right one. I can be hard to find a specialist in certain parts of the country, or even globally. I'd recommend going to the NVA (National Vulvodynia Association) website and join. Once you're a member you can get a list of recommended doctors in your area that specialize in VV.

I hope I was of some help! I know how hard it is to find information about this. Don't give up!

-Jen

jen007

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Re:

Post  maria1985 on Wed Jun 05, 2013 4:12 pm

Hi,
You mentioned you have had some urinary infection for which i suppose you have been treated with antibiotics.. Sexual intercourse is also painfull...I have been there. They discovered I had Candida in my urethra and bladder and that caused the pain I was getting and just like you sex was painfull..Candida can cause inflamation in the vagina and that makes sex almost unbearable.

The interesting thing here is that alot of women have previously had a UTI before experience "vulvodynia". Its a strong link between antibiotics and thrush taking over causing most symptoms women are complaining here (painfull sex, pain increasing before and during period when obv acidity of vagina drops making thrush fluorish, pain when sitting down etc etc). Candida is the most common but a couple other not so much and hard to find and treat. Talk to your GP's about the eventuality of having a systemic candida or bladder candiasis.. They can take a swab and check it and so you will know.

Hope this helps

maria1985

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...

Post  Marylynnreily on Thu Jun 06, 2013 9:24 am

Maria..I know many women on here will say that their vulvodynia has nothing to do with an actual infection, i was diagnosed for years with vulvodynia and it turned out to be a long term chronic infection for me...

Please try to find a gynecologist and try some clindesse for atleast 14 days for awhile, just to see if your problem is maybe bacterial, and then try the Gyne Lotrimin 3 day, atleast 3 packages (if you can find it in the stores where you live, its hard to find) if not, its worth it to order it online, you can get it online, and it is cheap..cheaper than Monistat..

Not all yeast creams are created equal! Monistat doesnt even work, for many people..

I know its a long shot, but its worth it to try..I had tried everything before discovering these things after MANY years, prayers, tears to God, and a broken marriage later..
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Marylynnreily

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Re: My story - please someone help

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