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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 …

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: 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 …

Comments: 0

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

Help please

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Help please

Post  phronesis on Sun Nov 05, 2017 6:12 am

I'm truly going insane.
I started living this hell the month of March this year. Everything was more or less ok-ish (I was suffering from a huge depression at that time, but I was feeling a lot better). I had sex and from then on everything went straight downhill.
I started feeling weird, like if my vagina was burning. It was something truly horrible, but I guess if you're here reading this you already know. I went to the hospital and the doctor that saw me there gave me this kinda pills that you gotta put down there for seven days; you know, to set the pH alright and restore the "normal state" that vaginas are supposed to have, idk how to say all this stuff English isn't my main language but this is how desperate I am.
Those thingies didn't do too much, I felt sorta relieved because I think they got some kind of painkiller in them but that was it.
I run one of these tests where they take like a sample from your vagina (is it called vaginal culture???) to see if I had some sort of bacteria or fungi. Nothing alike, all results were negative.
I went back to the hospital, the same doctor saw me again. This time she thought it might be herpes, so she gave me new pills (this time like, the ones you take orally or whatever it is called I'm so sorry). I took the pills and once again the symptoms sort of faded.
At the same time I was seeing my gynecologist, I explained her what I felt but she sorta dismissed my words telling that if I was already taking pills (whether it was the ones for the pH or the ones for the herpes) there was nothing she could do.
Several months passed after that, I didn't enjoy them fully because of these annoying sensations I felt down there, however they usually weren't /that/ bad so I managed. Peeing was no fun at all, every night I felt uncomfortable; idk if this happens to you all but I've read that it's quite common that you wake up feeling alright and it gets worse through the day? But I could tolerate it, somehow.
The thing is, the past few weeks (like, the past 5/6 weeks? idk) it's been true hell. It's become unbearable. It's like something is burning down there and I'm truly going insane. I went back to the hospital, a new doctor saw me there and gave me some medication to kill bacteria and another one to kill fungi. Nothing happened, as you might have noticed. I went to the gynecologist again and after explaining my symptoms she concluded that it's all in my head. I'm running lots of tests right now -blood, vaginal culture, urinalysis- but I already know they all will probably be negative 'cause they already did back then! This lady said that if all of them (and the pap that i'll get done later) are negative, then it's all in my head and i'll just have to talk about it with my therapist until it heals by itself somehow.
Incapable of accepting this, I searched for my symptoms on the internet until I found this. "Vulvodynia". At first I was happy; how could I not be? What I had, had an actual name! It wasn't just me! But the more I read about this disease, the more desperate I get. I guess you understand why: nobody really knows why it happens, there isn't a 100% effective method to get rid of it, even if you do it might come back again. Most doctors ignore that this disease even exists, and idk on your country but I'm from Argentina and here doctors usually get really upset when you tell them about something you've read on the internet because "they've studied and you haven't" so to them you basically dont know shit. I will tell my gynecologist about this when I see her again, but I'm 99% sure that she won't give a shit nor offer my no solutions of any kind. I'm already using jelly lidocaine 2% and most of the time it doesn't do nothing, only if I lay on my bed covered and watch something to distract myself (the only method I've discovered that calms my symptoms since this whole hell started).

I'm truly, truly going crazy. It's so frustrating because I was just starting to enjoy life (you know, after dealing with depression and after my psychiatrist decided I could stop taking antidepressants), and now I want to die all over again. I'm crying every night because of this, I just can't deal with it anymore. I'm having exams in two weeks and I don't know what to do anymore because when the pain starts I can't concentrate nor even sit down (and please don't tell me this has something to do with stress because I already had exams like a month and a half ago and everything was more or less fine, I wasn't suffering like I am now, it's not that). I don't want to suffer from this forever. I don't want to deal with this anymore. I want it to be over as soon as possible, I don't care what it takes. I can't even go out nor see my friends because I'm always feeling uncomfortable. I just need this to stop so I can actually live again. I've just had mi 21st birthday, I've got so much to live and this hell of a disease is restraining me from doing it. Please someone help me. I'm begging here.


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Re: Help please

Post  fairlight10 on Mon Nov 06, 2017 5:44 pm

Hi phronesis. Sorry to hear you also have this horrible condition. It is not in your head. It is real pain in your vulvar. Possibly neuropathic. I have been diagnosed with vulvar vestibulitis more than 5 years ago. Went to different doctors and told I had thrush, then atrophic vaginitis. The medications for these conditions made the pain worse. Found a gynaecologist who told me I had vulvodynia. Which just translates to pain in the vulvar. He prescribed a low dose of the antidepressant Nortriptyline 20mgs. This has worked for me and given me my life back.I was off work for 3months until I felt comfortable enough to function in the workplace. I also had acupuncture. Do not understate your feelings and emotions they definatly have an impact on this condition. Go back to your doctor and tell him about this condition and if need be tell him/her about this forum. Understate should read underestimate. You have found this forum, read as many as you can.I did not find it at the beginning and I wish I had. Good luck and know you are not alone.


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Post  EverythingIsDifferentNow on Wed Mar 21, 2018 5:19 am

check my posts.


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Re: Help please

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