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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

Which birth control should I choose to be on that won't make my Vulvodynia worse?

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Which birth control should I choose to be on that won't make my Vulvodynia worse?

Post  Olivia D on Tue Jun 12, 2018 1:31 pm

Hello all! I am new here. I would like some advice. I was diagnosed with Vulvodynia when I was 17. After a year of mental anguish, doctors telling my mother I am mentally ill and what not, needing a therapist, looking for attention, etc. I was finally heard and directed to a vulvar clinic. I was diagnosed with Vulvodynia and Vulvar Vestibulitis. I was put on Gabapentin 3x a day 900mgs. It actually worked and I had no problems, went off of it for like two years and it came back with a vengeance. I lost my virginity when I was 21. It actually didn't hurt, and I was fine, up until I started the Depo shot. Sex became very PAINFUL!!!! I wanted to cry, I felt intense burning and pain, the whole nine. I noticed it was when I went on Depo that sex became painful and it came back and has stayed with me. i can't take gabapentin anymore because for some reason my body doesn't do well with it. I get so nauseous and I eat with it. I puked so much from it. I use to take that on an empty stomach and have just drowsiness, but obviously my body doesn't like it now Sad No matter what I do! Sad

So, this may seem crazy, but I felt I had more flare ups and more pain being on Depo. It's also weird because I feel like I need a period. When I got my period I actually felt "relieved" with my vulvodynia. For some odd reason my pain would come about like a week before my period, but when I got it, everything was fine and normal again. I asked my doctor what other BC methods would work, but they keep saying just because I was on Depo doesn't mean the Nexplanon will have the same side effects. I feel it would because it's progestrone, and Depo is the same thing. I don't know if Nexplanon will be better? Or if I need a BC that will produce a period? Like the pill or the patch? I tried the copper IUD the one with no hormones in it, my body rejected the IUD and it was extreme cramping that I couldn't deal with. Unfortunately that didn't work out to my favor because that would be the best option.

What do you suggest? And do you think my theory is crazy that maybe birth control makes your condition worse? I don't know what to do, and the doctors who specialize in this don't seem to answer my questions, so I will go to my fellow sufferers of this condition and see what you all think. Thank you so much for reading, and you have my deepest sympathy and love for dealing with this horrid condition. Xoxo.

Olivia D

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Re: Which birth control should I choose to be on that won't make my Vulvodynia worse?

Post  emalita on Tue Jun 12, 2018 4:08 pm

Here's a good article I had read in the past about the pill and its hormone destroying connection (don't worry, it's not written by Dr. Oz).


Many women find a link between hormonal birth control and vulvodynia. So honestly, I wouldn't recommend any of them if you've had issues in the past.

You mentioned you can't take Gabapentin anymore, but have you tried it as a compounded cream (non-alcohol base) that gets applied directly to your vulva? That's how my gynecologist wrote my Rx for it (I never used it though for other reasons I won't go into here).


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