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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: 4

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 …

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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

does anyone else have nocturnal itching?

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does anyone else have nocturnal itching?

Post  mary jane on Fri Jul 07, 2017 10:03 am

I keep getting nocturnal itching with my nerve pain, never during the day. It's from the nerves, as I've had swabs and there is no yeast. does anyone else have this symptom? I only had it in 2014..during my remission I never got this symptom.

thanks xx
mary jane

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Re: does anyone else have nocturnal itching?

Post  aspaceodyssey on Fri Jan 19, 2018 4:57 pm

have you been diagnosed with lichen sclerosus or ever suspected that might be an underlying cause? just throwing it out there in case it's helpful at all because I know itchiness that gets worse at night is a defining symptom. I have this condition and it didn't present exactly typically (no scaly white patches, just general redness and thin skin, etc.) which prevented me from getting an accurate diagnosis for years.



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Re: does anyone else have nocturnal itching?

Post  ryn207 on Fri Feb 02, 2018 11:42 pm

I was diagnosed with lichen sclerosus. Or at least that's what my dermatologist old me. She never did a biopsy. I don't have the nocturnal itching, but random itching during the day on my vulva and around my anus and then pain during intercourse. I do think the skin is thin; however, I've also been using topical steroids for over a year so that can also cause it. It makes me nervous that while medicine helps it also has it's own symptoms.

Have you guys had any luck with different medicines/treatments?


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Re: does anyone else have nocturnal itching?

Post  CatJones on Sun May 06, 2018 2:54 am

I had horrible itching for an entire year. It started from a reaction to a latex condom (it was either a latex allergy or my dermatologist suspects I was allergic to a preservative in the condoms because apparently on the shelf has a preservative). Do not steroids shot to the skin. That's what they think stated my vulvodynia. I ended up getting vintage opera gloves and wearing them at night (I was itching sooo much at night I even would take them off, so I had bind the gloves with tight hair ties to not take them off). Wearing gloves really helped. I also so a dermatologist because at that point it was an itch scratch cycle. I was given Protopic which acts like a steroid but not a steroid. I used it as a cream mixed with I can't remember that thing like petroleum jelly. They gave me another cream that didn't really help. I had good luck with organic coconut oil but now I'm told not to use coconut oil because of the sugar in it. i hope this helps! Sending you strength!



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Re: does anyone else have nocturnal itching?

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