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» 7 months since the diagnosis
Thu Aug 16, 2018 9:09 am by Gaby

» Did going off antidepressants cause this?
Wed Aug 15, 2018 2:08 am by ryn207

» Sex after vulvodynia (husband edition)
Mon Aug 13, 2018 12:15 pm by emalita

» burning sensation and small cut? Maybe thrush?
Sun Aug 12, 2018 8:24 pm by emalita

» can v return after vestibulectomy?
Sun Aug 12, 2018 12:01 pm by Alana3

» Cleveland Clinic - Pain Management, Weston, FL
Sat Aug 11, 2018 12:37 pm by Alana3

» Hurting, Burning, Itching, and Worn Out
Fri Aug 10, 2018 7:55 pm by fairlight10

» GREATFULL FOR THIS WEBSITE
Thu Aug 09, 2018 8:37 pm by Nicola Jost

» Can you guys tell me your experiences with diflucan/Fluconazole?
Tue Aug 07, 2018 6:01 am by Guest

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 1

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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 …

Comments: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

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: 10

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.

Comments: 1

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


My story, so far...(lengthy)

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My story, so far...(lengthy)

Post  haybay on Fri Apr 03, 2015 2:23 am

I'm Hailey, and I'll be 28 years old next month. I've worked retail management and customer service most of my life, and I'm currently a full time student. I've been exposed to high stress environments for the last ten years, and I'm not the type to worry much about anything. I've always believed everything happens for a reason, and in time, "even grass will turn to milk."  

The experience I've had with what *might* be vulvodynia is something that goes against everything I stand for. How can there be a reason that I, as well as all of you, can be challenged with something so painful, and so invisible to anyone who can help. This discomfort, these symptoms, with no outward signs made ABSOLUTELY NO SENSE to me.

As a child, and throughout my adolescence, I was incredibly prone to UTIs and kidney stones. After several UTIs during my youth, I was hospitalized with a severe kidney infection and dehydration. I also maintained a fever of 104.something for several hours. Every time I had a UTI, I was given amoxicillin, and every time I took amoxicillin, I got a yeast infection. Eventually I started requesting Diflucan with amoxicillin to combat the yeast infection. More recently, doctors prescribed antibiotics less likely to give me a yeast infection, because I can't imagine a yeast infection on top of whatever this is.

I can remember having vulvar discomfort since I was 24 years old. I had been sexually inactive for 2 years at that point, and it began with a very localized itch. I had one very small, skin colored bump at the opening of my labia majora. The bump itched incessantly, and if I pinched it, it would bruise and discharge a small amount of blood from the nearby hair follicle. The wound would stay open for days and it seemed to infect the other side of the opening of my labia majora, at the exact spot it rested against with my legs closed. The bumps were sensative to urine and water. The bump would fade and return, never with any outward visibility. Even when the bump wasn't present, I began to develop a chronic itch. After my monthly period, it would clear up for days, weeks, and once or twice, a month or more.

I waited until the symptoms were incredibly discomforting before going to the local heath department. They gave me tests for the most common STDs and everything showed negative. I remained sexually inactive for another year, but still experienced itching. The itching became so intense that I was ripping my skin with my fingernails and damn near scrubbing myself with toilet paper because it felt so good. Of course, I developed a bacterial infection that caused the itch to become even MORE intense.

I returned to the health department several months after my first visit. I no longer had the invisible, itchy, swollen bumps that it seemed to start with. Just an embarrassing, uncomfortable itch. The doctor I saw that time around informed me that my previous STD tests never included a test for herpes. I never knew a special culture was done to test for herpes, and was always under the impression that I'd been tested every year for everything since I was 16. Evidently, I'd never been tested for herpes, and I about had a heart attack right then and there. I know if that's the direction it went in, I'd be okay - the world wouldn't end - but I was TERRIFIED.

The doctor took one look, for a few seconds, and told me that she thought I had herpes. She said, "I really usually tell people that I'm 90% sure without a culture, but for you, I'm only 80% sure. You don't have a classic case, that's for sure." That day, at 26 years old, I went home and cried in my momma's lap. I blamed God, my exboyfriends, the health department and myself. The woman prescribed me with cream and medicine for herpes, but I did not take it. I'd researched enough about my symptoms at that point, and women existed with my symptoms! Women that didn't have herpes! And actually, some of these women experienced extremely intensified symptoms after treating them with herpes medicine. I thought I'd get a second opinion.

I scheduled an appointment with an OB/GYN in the medical district. The doctor examined me and gave me tests for bacterial infections and STDs. She did not give me a test for herpes, because there was nothing to culture. There was no outbreaks, no pimples, nothing with a discharge; everything looked fine. She did notice high levels of bacteria, and gave me an Rx for Flagel and a steroidal topical cream. The cream burned, and did not help at all. The Flagel seemed to help while I was taking it, but as soon as I stopped taking it, the itch returned.

Without the money to keep going to doctors and buying perscriptions, I tried to find a home remedy. I started using different lotions. Lotion seemed to help because it made scratching more satisfying and less traumatic to my scarring skin. I did go back to the gynecologist approximately 8 months later. My symptoms hadn't improved since I finished my antibiotics. I was starting to experience swelling and burning, as well as stabbing pain in and around my clitoral hood and glans. I've never felt any pain or itch any closer to my vaginal opening than that. But, when my clitoris is swollen, it feels like there is a splinter firmly wedged somewhere in there. It makes underwear and sex completely uncomfortable. I was still scratching so hard I was breaking skin, and the gynecologist was able to see that. She could see that I was raw in the area around and above my clitoris, and extending through my hairline at the opening of my labia majora.

She said she could culture the area of skin I broke scratching for herpes (to ease my mind), but it may not be enough to render results. It would be expensive, and its accuracy could not be guaranteed because the skin was broken from a scratch, not an outbreak. I declined the culture and agreed to come back on a day where my symptoms were any worse or more visible, at least. She suggested I look into the symptoms of lichen sclerosis to see if they matched my own.

I finally began discussing my symptoms with a friend, who told me her sister and her best friend had vulvodynia. She said her both her sister's and her friend's symptoms were provoked by using the ONE-TIME USE MONISTAT for a yeast infection. I began researching vulvodynia and found that it more accurately describes my symptoms than anything else I've looked at. Also, in regards to my doctor's suggestion of lichen sclerosis, I found another source that talked about lichen simplex, which also closely matched my symptoms. My doctor also said that our nerves can develop a lifelong "itching" sensation after situations that cause serious, long term itching. In other words, she said if you scratch long enough, you'll itch forever.

So - anyway, that's my story so far. I've found ice and sleeping pills help at night, wearing seemless underwear (regardless of the material) helps during the day, and SPECIFICALLY, Queen Helene's Cocoa Butter Face & Body Cream keeps the area from becoming raw.

Wow, this got long - but it feels great to have it all out in chronological order. I'm going to keep this as a record and bring it with me to my next appointment to see if there's something I forgot to tell my doctor!

Time for a nap.
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haybay

Posts : 5
Join date : 2015-03-31
Age : 31
Location : Mississippi, USA

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