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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

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

My Personal Journey with Vaginismus/Vulvodynia

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My Personal Journey with Vaginismus/Vulvodynia

Post  stillinpain on Fri May 04, 2018 3:10 am

I've been struggling with this since age 12, but have probably had it forever. I got my Vaginismus from a traumatizing pelvic exam at 12 and recently discovered that my Vulvodynia is Nueroproliferative, which means it came from the way I was formed in the womb. This revelation led me to get a Vestibulectomy in Nov to remove the painful area at the perineum. Unfortunately when my gyno poked me with the Qtip by my clit right before the surgery I screamed quite shocked at how much it hurt so she ended up giving me a full instead of a partial. Now, 5 months later, my vagina looks completely different (more folds at the top and it's like she removed a bunch of skin from the bottom, leaving it more curved) and the Botox injections have just worn off so I have a really bad infection that won't go away. My bf said I was taking too long to recover and left me. I only have one session of physical therapy left but I keep pushing it back due to this infection preventing me from dilating. I use the dilators from vaginismus.com with the set of 5 and I'm stuck on D2. Now I don't know what to do. I have all of these bumps, I guess from the stitches, that really hurt and hard to avoid when inserting anything. I also got a cyst on Valentine's Day (great timing) which is still there. It feels like one thing after another.

I joined the Vaginismus program 5 years ago and went through it all in 2 years but couldn't get my ex inside no matter how hard I tried. After that I had several short relationships that I couldn't make last long enough to make any progress. They would try with me and then leave because they didn't have patience for the situation (I was in my late 20's then). I saw a psych, 2 sex therapists, and several gynos. I tried vaginal Valium, Lidocaine, Baclofen, estrogen cream, you name it I did it. I've only had any success with sex with 3 of my exes, and by success I mean I could get them in and have slight movement for a few mins before the pain is too much, they get soft and fall out. I really thought I would have a regular partner in my last bf and was completely shocked that he bailed on me. I'm feeling pretty low and trying to find the will to keep moving forward and not go back to just pretending I don't have a problem like I did in college. I'm 31 and just don't see the light at the end of the tunnel right now. Some people tell me not to give up while others tell me to find a man who will be ok with me as I am and not holding out for penetrative sex. Lately even outercourse and oral have been hurting me so my spirits are sinking. Can anyone give me advice on how to get through this slump?


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