Log in

I forgot my password

Latest topics
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

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

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


Vulvodynia?

Go down

Vulvodynia?

Post  Casscass09 on Fri May 20, 2016 2:34 pm

Hello,
This is gonna be a long story, sorry. So more than a year ago when I first became sexually active I gotta uti, and bacterial vaginitis. I got the uti to go away. But it took many courses of antibiotics the bv to go away. When it finally went away, I was still left with a symptom and that was it burning while I was peeling. After seeing my urologist many times she told me she thinks it's borderline IC. I never got any tests done for that because at the time she gave me pyridum to help with the burning. And for some reason after taking that my symptoms went away. Fast forward about 2 months and I'm still symptom free with the burning. But then I try to have sex again and it triggers my painful urination. But I noticed even before seeing a urologist for IC I had pain while having sex. It's hard to explain but when I'm having sex it feels like the walls of my vagina are being like scraped. They hurt. I don't know if that made sense but yeah. When I went to the gynecologist she took a look around and she told me the muscles of the opening of my vagina were very vey tight. And that made me think maybe it was pelvic floor dysfunction. But now that I'm looking up symptoms it's seems like it could be vulvoadyna. It hurt even when she swabbed the inside with a q-tip. The only time I hurt is when something is in my vagina. I sometimes get really itchy around the opening of my vagina. But that's like once every week. Maybe even less. Does anyone think it could be vulvoadyna? I've also got some weird discharge going one and I've gotten many tests done and have come back negative. I'm thinking that the antibiotics ruined all the good bacteria down there and that's what caused all this.

Casscass09

Posts : 6
Join date : 2016-05-20

View user profile

Back to top Go down

RE; Vulvodynia

Post  Antaea on Fri May 20, 2016 4:56 pm

Welcome Casscass09 and thanks for sharing your story.
What you're telling, let me think of provoked V or vestibulitis. This would not exclude the diagnosis you've got. Hope, you'll soon find out. Maybe you ask your gyn whether that could be a possibility.
avatar
Antaea

Posts : 29
Join date : 2016-05-11
Age : 69
Location : Gotland/Sweden

View user profile

Back to top Go down

Re: Vulvodynia?

Post  emalita on Fri May 20, 2016 5:00 pm

I'm sure the ladies on this forum are going to get sick of me writing this, but I want to make sure women understand what a vulvodynia diagnosis means. I really wish someone would have told me this earlier on so I knew there was hope for relief regardless of all the dismissive doctors I saw throwing around a vague vulvodynia diagnosis.

Vulvodynia isn't a single disease/condition for everyone. Vulvodynia is a diagnosis based off of elimination of other conditions (e.g. yeast, BV, STDs, etc.), and when a doctor cannot find a cause for the pain, they may diagnose vulvodynia, which is simply chronic vulvar pain without a known cause. Basically they are telling you that you're in pain, but they don't know why. Some women have a nerve issue, some have pelvic floor dysfunction, some have undiagnosed inflammatory conditions, some have unidentified soap/detergent reactions, etc..

Personally for me, all of my tests came back normal until I went to a vulvovaginal specialist who treats women with only certain types of vulvar pain. He diagnosed me with a very bad case of inflammatory vaginitis (IV not DIV) - if you are interested in what my test results showed to result in this diagnosis, let me know as I am happy to share them. My inflammation is not caused by an infection but is left over from too many antibiotics and multiple irritating treatments after an infection (a longer version of my story is linked in my signature). My issue is not nerve related or caused by unresolved sexual issues as the other vulvar specialists I've seen have insisted.

The only reason I'm telling you all this is to hopefully give you encouragement to keep searching for answers, and in my opinion, being told I had vulvodynia wasn't good enough for me since it didn't tell me what was actually wrong (just the opposite really - just a fancy medical term for an unexplained pain). Below are some suggestions and probing questions to hopefully head you in the right direction (some are obvious, but I have to include them just in case):

- Eliminate all chemicals that are coming into contact with your vulva. This includes: flushable or feminine wipes (they are the devil in wipe form), shampoo (my OBGYN has me washing my hair in the sink - he says it only takes a single drop in the shower to set off a reaction), laundry detergent (I make my own, but my OBGYN recommends All Free & Clear or Cheer Free & Gentle), shaving cream (my OBGYN recommends Vanicream Shaving Cream), super soft or scented toilet paper (lots of chemicals go into making super plush TP), not 100% cotton tampons/pads (I use a UK brand of organic 100% cotton tampons called TOTM - ordered from Amazon), douches, etc.

- If you are having sex, your partner MUST use hypoallergenic products also. Afterall, your partner's skin is coming into contact with you. So any chemical residues on their skin can rub off on you. It can take weeks to months for your skin to calm down. So give this a fair shot before writing it off.

- Did your doctor tell you what your vaginal pH is, or do you monitor it yourself? A higher pH doesn't necessarily mean an infection, but it could be a sign of low good bacteria, especially since you were on antibiotics. For me, my lactobacillus count is low (even though my PH is normal), and probiotics and pH balancing products were not enough to restore healthy flora.

- You mentioned you have discharge. Does it have a color or smell? Does your pain seem worse when it comes into contact with your vulva? Does it stick to your skin or ruin your underwear?

I hope this helps you a little to get to the bottom of your pain! As a wonderful lady on this forum (PainBlogger) once said "'Chronic' does not necessarily mean 'permanent'...Stubbornness pays with this condition. Be stubborn and don't give up hope."

emalita

Posts : 246
Join date : 2016-03-29
Location : USA

View user profile

Back to top Go down

RE; Vulvodynia

Post  Antaea on Fri May 20, 2016 5:13 pm

This is very important information which should be repeatet from time to time.
THANK YOU.
But personal, the diagnosis "vulvodynia" did not parrot something I already had guessed. It opens up to a special treatment which is not possible without. I mean drugs like Lyrica and other medication for neuropathic pain, even this is only one type of vulvodynia.
Another thought: Women who are pre-og postmenopausal, should think of measuring their estrogen-levels. Often too low levels and atrophy of the skin may cause generalized vulvodynia in women after the menopause. Topical estrogen may also be helpful for women suffring from provoked vestibulitis.
avatar
Antaea

Posts : 29
Join date : 2016-05-11
Age : 69
Location : Gotland/Sweden

View user profile

Back to top Go down

Re: Vulvodynia?

Post  emalita on Fri May 20, 2016 5:25 pm

You are absolutely correct Smile If the pain is truly nerve related, a diagnosis of vulvodynia will open up other treatment options with drugs like anticonvulsants and antidepressants.

emalita

Posts : 246
Join date : 2016-03-29
Location : USA

View user profile

Back to top Go down

Re: Vulvodynia?

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum