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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 …

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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

Success! Estradiol/Testosterone compound cream

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Success! Estradiol/Testosterone compound cream

Post  daisiesfordays on Sat Aug 16, 2014 7:16 am

Hi all,
I developed VVS after taking low estrogen birth control. I didn't even know I had developed it (always skipped the sugar pills so I didn't get my period) until I had a yeast infection. Like many others, it took me about 5 tries to find a doctor to help me (message me if you want the details, he is on the west coast).
First, we tried estrogen cream. Estrace, to be exact. He gave me samples so I wouldn't have to purchase it. Smile That helped probably... 70%.
Then, I took spironolactone for acne. Was on it literally for a day, before my v started freaking out. Sad I was having pelvic floor spasms and it was super dry down there (when I look back, there was a decrease in my acne the following day after I took my first birth control pill. Sounds weird, but I am ODDLY sensitive to hormones.). I went and saw him, he said I am having PFD from all the pain my poor vestibule had been in. It was also a lot more red and "angry" (my word, not his) than when I had come in 3 weeks ago. I got prescribed some valium suppositories. He also mentioned that if I don't improve, we will have to consider surgery (really don't want a scalpel there). So I did a lot of research...
It just seemed weird to me that the Spironolactone had caused that, the only thing would be that I had super duper low amounts of free testosterone in my body! I managed to convince the office to write me a prescription for estradiol/ testosterone cream.  Twisted Evil It was only 42$ (last week I had spent $102 on my v, appointment + valium sups... yeah my insurance sucks and won't even cover compounds) and that is a small price to pay as compared to how much I had already spent!
It just seemed weird to me that the Spironolactone had caused that, the only thing would be that I had super duper low amounts of free testosterone in my body! So naturally, I threw that orange container of those bad boys away.
I started using the estradiol/testosterone cream. The first night, it was super red and uncomfortable, but the cream helped soothe the area.
Within 3 days, my vestibule looked completely normal! I've been poking and prodding it and there isn't even any ounce of discomfort.  Shocked 
Now, I just have to deal with my secondary vaginismus that stemmed from this whole 6 month journey. Crazy how more doctors aren't educated in it, especially when they keep telling you to put more irritating things down there! Ugh. Obviously I can't take birth control ever again, or clearly anything hormonal for my face, but I'll trade some zits and oiliness for the hell (quite literally, fiery) that I endured. Wishing luck to all you strong ladies!!! I love you 


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Testosterone receptors

Post  Sarah2993 on Tue Dec 26, 2017 11:13 pm

Hello! I'm glad the compound cream works for you - that's what has worked for me. I actually have/had 2 separate issues - vulvodynia, and chronic fissuring. I had surgery for the vulvodynia (vestibulectomy), which helped immensely. But my skin down there was/is incredibly fragile - my doctor said that when she was trying to stitch me up during the surgery, pieces of my skin would literally just tear off. So, I use a testosterone/estriadol compound cream to treat that, and I don't have those fissures anymore!

My doctor said that it's likely because my testosterone receptors in that area of the body are faulty. I wonder if this might also be the issue for you. The way I understand it, you can think of testosterone receptors as vacuum cleaners. The body has various vacuums throughout, one of which is located at/near the vagina. So even though there is plenty of testosterone (T) being produced by the body, the vacuum at the vagina isn't working properly to actually pick up enough T. Your hormone levels on a blood test would be just fine (my T is elevated by 1 point, even) because it isn't a T production issue - it's a T receptor issue.

My doctor thinks this was caused by BC pills too. Just thought I'd share because I think it's interesting!


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