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» Lichen Sclerosus
Yesterday at 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

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: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


New here, looking for some support.

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New here, looking for some support.

Post  PhoenixFire on Fri Nov 18, 2016 1:34 am

Hi everyone. Let me start by saying that reading this forum today has made me feel so much less alone. My overall story is really long, so I'll try to keep it as short as I can. It all started when I was 16 and got my first uti. I believed I was over treated for it, and then started self treating for yeast when I thought that was my problem afterwards. Then started the cycle of vulva redness and burning pain. No doctor I saw could figure out what was wrong with me, and I tried so many things. I don't even remember cultures ever showing anything. When I was 18 or so I saw a gyno who told me to try changing my diet for a while, cutting out sugar, gluten, etc. I did this for about a year, and I can't remember if it help much, but it might have. I was also pretty depressed and isolated at this point. When I was 19 I met my current boyfriend, and at that point my vulva was actually pretty normal, I don't know if it was the diet, or just time, but I hardly had any pain. He could touch me, and we would do all sorts of foreplay just fine. After 6 months we decided to have sex (we were both virgins) and it was wonderful. I only had minimal pain at the beginning, but I think that's normal for your first time. I did end up with a uti, and yeast infection, but those cleared easily. Then those both happened again the next time we had sex. So I decided that condoms might be the culprit, and I got the implant in my arm. I had some infections occasionally while on, but I could clear them with boric acid. I do remember at one point I tried using vitamin c vaginally (I read about it online as a bv cure) and that caused awful burning that lasted for months, but eventually did pass. After three years I did get the implant removed, and was briefly put on the pill. I had a bad reaction to it, so discontinued after less than two months. So now I'm 23, and basically at my wits end. I've had vulva burning, stinging, soreness, itching, and everything bad for about 3 months now. I did have a uti around the beginning of it, but the pain started before that. I've been tested for yeast, bv, stds, you name it. Sometimes it would come back with a little yeast or some clue cells, but the treatments never helped. I also know what it feels like when I have an infection, and it's nothing like this. I haven't been able to have sex because of the pain, which is unprovoked but is almost all the time. I've been seeing a natropath, and she did test me for food allergies while came back that I'm very sensitive to dairy. I've cut out dairy for almost a month now, but vulva pain is very much still present. She may want to also test my hormones, but all these tests are getting expensive. I had normal cycles before bc, but now I only get a period every month and a half or so. I also overall don't feel that great, I'm tired most of the time, I get lower back pain that sometimes feels like a burning pain, headaches, nausea, I'm basically a mess. But I would deal with all of this if I didn't have this awful burning pain, it honestly makes me so depressed, I'm lucky that my boyfriend is supportive. Maybe I just needed to vent, but advise would be much appreciated.

PhoenixFire

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Re: New here, looking for some support.

Post  PhoenixFire on Fri Nov 18, 2016 1:37 am

I also wanted to note that last year I had an amazing year. My vulva and vagina felt almost totally normal, I was having sex with my boyfriend once or twice a week, and it would have been more often if possible. This problem only started after coming OFF of birth control, so I wonder if it could be hormone related after all. It's so frustrating to not have a clear idea of how to get better

PhoenixFire

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Re: New here, looking for some support.

Post  PhoenixFire on Fri Nov 18, 2016 1:43 am

One last thing! And this really is the last thing. Has anyone ever had a bad reaction to boric acid suppositories? I used one today because they've worked so well for me in the past without side effects, but not only did it make my pain worse (I'm sure it's because this isn't an infection, and because I've been imflamed for so long) but I've also been feeling really tired, spacey, and just off. I feel like it might be a reaction, and it's honestly a little scary

PhoenixFire

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Re: New here, looking for some support.

Post  PainBlogger on Sun Nov 20, 2016 10:35 pm

Sorry that you're feeling bad with this horrible condition.

My problems also started with a UTI (and concurrent thrush). You can read here what I've tried: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement

I need to update that thread again as I'm still doing well. Duloxetine has been a really big help to me. My average daily pain is now 1/10 and I'm pain-free much of the time. But it took me a while of trying unsuccessful treatments before I found what worked.

Has any doctor mentioned fibromyalgia to you? If you're getting back pain, headaches and tiredness as well as vulval pain then maybe you have a more widespread chronic pain condition. Would you be able to see a pain specialist?

I hope you find something or combination of things that works for you soon.

PainBlogger

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Re: New here, looking for some support.

Post  PhoenixFire on Fri Nov 25, 2016 4:51 am

Thank you for the reply! I've actually been looking into fibromyalgia, since I've been getting lower and mid back pain that is like a radiating burning, pain in my pelvic bones, upper back pain, muscles pains that aren't from exercise, fatigue, etc. And of course the ever present vulva burning, I'm laying in bed with an ice pack down there as I type this. Sad
I also had a bit of a scare because I was taking antibiotics for a suspected uti, but a few days into it I woke up with a high fever, headache, lower back pain, dizziness. I went right back to the doctor, but she said she thought it was a virus because they didn't find bacteria in my urine. Luckily after one miserable day my fever was gone, and I felt a lot better. Still not feeling great, but that's been my life lately. Maybe a pain specialist is somewhere to look, but I'm only 23 with limited funds unfortunately.

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Re: New here, looking for some support.

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