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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 …

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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 …

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

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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

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: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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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: 5


FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.

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FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.

Post  GuinevereRose on Tue Mar 29, 2016 3:57 pm

When I was going through my first horrific months of vulvodynia I spent quite a bit of time on this website. It was helpful for me to read other people’s stories that I could relate to. I promised myself that if I ever found a treatment plan that worked, I would come back and share my story here. I’m happy to report that I eventually did find a solution, and my vulvodynia pain is now completely gone.

Let’s start at the beginning: the onset of my generalized vulvodynia. Following a period of intense stress in my personal life, I was traveling abroad with my boyfriend in France. The uncomfortable sensation came on within the course of 24 hours. I felt a slight itchiness and intense discomfort around my labia majora and mons pubis. (Basically, everywhere the hair grows.) The discomfort was the worst when I was walking — it felt like I was wearing a maxi pad made of sandpaper. My skin felt incredibly raw, and it was irritated by any sort of movement of my legs. It was almost unbearable to walk.

Five months and three doctors later, I was still in the exact same state. My doctors and I had excluded the possibilities of yeast infection and std’s through testing. I had tried shaving, not shaving, wearing seamless underwear, wearing no underwear, baby powder, valtrex, lidocaine, fluconazole, topical estrogen, topical steroids, oral steroids, nerve blockers, anticonvulsants… I felt like I had run through every option on the internet. I was desperate — thinking of quitting the job I loved as an art director at a popular blog, worried that my boyfriend might leave me if I couldn’t get well soon, imagining my future alone and maybe even in a wheelchair.

I was then diagnosed with geographic tongue, which in my mind further confirmed that the pubic pain I was experiencing was definitely caused by the mysterious condition known as vulvodynia.

By this point I was suffering from extreme anxiety and desperation on a day-in-day-out basis due to my condition. I felt helpless, and completely isolated by this weird, embarrassing condition that no one had ever heard of. But even in my darkest hour, I promised myself I would keep experimenting and searching for a cure. That said, the emotional cycle of experimenting with treatment options was exhausting. Those of you who are dealing with it know: the surge of hope followed by the crush of disappointment, each one worse than the last.

I’m very glad that I didn’t stop experimenting though, because I eventually found something that worked for me: a combination of periodic hair removal and a low-grade antidepressant called Lexipro. When I went in for my first Brazilian wax I was pretty terrified. “This will either kill me or cure me,” I thought. The process was painful and seemed to take forever. But when I walked out of that salon… the sandpaper feeling was gone.

I still had a heightened sensitivity in my pubic region - I felt hyper aware of the seams in my underwear, the string of a tampon, the seam of my jeans. It was almost like someone had just “turned the volume up” on the nerves in that region. But the sandpaper feeling was gone, and it didn’t return until the hair started growing back weeks later.

I’m not sure if the Lexipro directly changed the way my brain received pain signals from my pubic area, or if it just made me stop having anxiety about it. In either case, within a month or two of Brazilian waxing combined with a once-daily dose of Lexipro, I was back to my old self again. Even the geographic tongue eventually faded away.

Now I walk, run, ride bikes, swim, wear leggings and skinny jeans without a thought… just like I did before. I do have to maintain the waxing, because the sensitivity seems to still be there a bit. But it’s a small price to pay for feeling good again.

I am SO THANKFUL to God that I found a solution for my vulvodynia, and I think the entire experience made me a more empathetic, grateful person in general. It was a nightmare, and one of the hardest things I’ve ever been through both emotionally and physically. My heart goes out to those of you who are still looking for your “cure”. I send you only the purest vibrations of LOVE and support. Keep searching, and keep hoping. Change can happen!

GuinevereRose

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Re: FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.

Post  emalita on Tue Mar 29, 2016 7:29 pm

I am so happy for you!!! I am envious of your ability to wear pants Smile I haven't been able to even wear underwear in MONTHS! I hope your pain stays away, and you can forget that you have a vulva from time to time Wink

emalita

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Re: FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.

Post  Sebby (Admin) on Tue Mar 29, 2016 7:38 pm

I'm so pleased for you! Smile and thank you for coming back to share with our members, it gives many hope.

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Re: FINALLY found a successful treatment!!! Wanted to share my story of hope. Don't give up.

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