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» New here would very much appreciate advice at the end of my rope
Fri Jan 11, 2019 1:46 am by Jma990o

» Diagnosed Recently
Tue Jan 08, 2019 3:55 pm by flissyg

» Looking for suggestions or encouragement
Thu Jan 03, 2019 11:09 am by Gaby

» Clinical Trial for Vulvodynia Treatment
Wed Dec 19, 2018 7:13 pm by wramirez

» New and need advice and help
Thu Dec 13, 2018 9:48 am by Derry59

» Things that have worked for me
Tue Dec 11, 2018 11:32 am by Amethyst

» Found relief after more than 15 years of pain!
Tue Dec 11, 2018 11:17 am by Amethyst

» I'm new to this forum and would love some advice! :)
Tue Dec 11, 2018 3:06 am by Cin124

» I think I know what causes vulvodynia-it's the memory of pain
Sat Dec 08, 2018 1:24 pm by foxysugarpants

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 2

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 0

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 6

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 4

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: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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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