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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 …

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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


VESTIBULE TEARING/ABRASIONS

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VESTIBULE TEARING/ABRASIONS

Post  A2015 on Sat Aug 01, 2015 5:38 pm

Hello,

I am suffering with VVS for a second time. I have provoked VVS, my skin is red & subtly inflammed in the whole area that is sore.

I had VVS from 2012-13 when I was on the Pill. When I eventually came off it, I was 100% cured back to normal within a month.
After 18 perfect months, this February I developed infections & now have had VVS again since.

When I first had VVS for 1.5 years, I was in a relationship. For about a year, whenever we had sex it would get more inflammed & often triggered a yeast/bacterial infection.
After a while, I started to get a recurring tear at the 6 o'clock point & just inside the opening on either side (where the Bartholin glands are). This would happen even if I used lots of lubricant.

Once I was cured, I never had any tearing during sex at all. My vestibule tissue looked & felt normal with no redness.

Since my VVS has come back, I have had sex once. I got the same tears/abrasions. They heal very quickly, but I know would just happen again if I attempted sex again.

I guess I am writing this just to see if anyone else experiences this, as I expect I'm not alone.

My Vulval Dermatologist says she wants to try me on an antidepressant. I am concerned about the red/inflammed skin and wonder how the antidepressant could help this, surely I would still be prone to tearing if the skin itself is still in a fragile condition?

A2015

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Re: VESTIBULE TEARING/ABRASIONS

Post  sailor_moon on Sun Aug 02, 2015 6:29 am

I too suffer from inflammation and redness, sometimes I get a tear in the skin when it is fragile Sad the tear does heal up but the redness and inflammation stays.

I am wondering the same question, how on earth does an antidepressant fix redness? I asked my current specialist and he said if it is nerves causing the vulvodynia the nerve endings to the vulva can become inflammed and continuously firing off, which causes the redness.

He put me on a trial for Lyrica, been on it since the start of April and all it does it get rid of the extremity of the real bad burn, the burn is still there, not as extreme. however, my biggest symptom is extreme itching and it does nothing to help with that. I see him tomorrow as a follow up to an investigative Laproscopy and see where to go from here, as I have low estrogen and progesterone but he needed to fix many endometriosis I may have had [which I did!] via the laproscopy before he could treat my hormones as Endo flares up with excess estrogen.

Funny enough my issue started when I came OFF the pill!!!

I've tried every cream in the book and the only thing I can use down there that does not irritate is bursting open an Evening Primrose Oil capsule and applying the oil.

Can I ask what your main symptoms are?

I suffer intense itching almost 24/7, burning, and "nerve pain" that is only in my left vestibule area and it runs up my pelvis and down my bum cheek...when I had surgery 4 weeks ago they must have put my back out or something moving me coz now it is SO much worse!

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Re: VESTIBULE TEARING/ABRASIONS

Post  Toobusy9561 on Sat Oct 03, 2015 12:28 am

Itching with burning and tearing, redness and inflammation could be Lichen Sclerosus (this also includes the anal area where you will get fissures). Not everyone gets the "white" that you see on search images for LS. The gyno can do a biopsy to be sure or just a trial of high potency steroid ointment (avoid creams, they have added ingredients than can irritate) such as Clobetasol.

Have you looked at your vulva/anal area to see if everything looks ok? Some women don't realize they have LS (I am one of them) until they see white areas. Anyway..its just something to look into.

Pain on one side could be pelvic floor. Whenever you have pelvic pain, you tend to "brace" or "clench" that area and if it goes on for a while, the muscles get out of balance or become hard and knotted causes more pains.

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Re: VESTIBULE TEARING/ABRASIONS

Post  sailor_moon on Sat Oct 03, 2015 12:35 am

I have had 2 biopsies done, and both only showed chronic inflammation. I tried that steroid ointment along with many others and all they do is make me even worse. Thanks for your suggestion though!

I recently tested positive for yeast after 2 and a half years of all tests being negative, but any treatment that has been given to me makes do differ to my symptoms. Got given fluconazole to take for 6 weeks and it made no difference at all. And the test showed it was just normal yeast candida albicans and not a weird funny type.

Running short on ideas. I always thought that you had to have the horrible white patches to have LS? Surely after 2 biopsies it would have showed?

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Re: VESTIBULE TEARING/ABRASIONS

Post  Guest on Sat Oct 03, 2015 9:00 pm

Hi, A2015 how did you get better the first time? Maybe it can help you this time as well?

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Re: VESTIBULE TEARING/ABRASIONS

Post  A2015 on Sun Oct 04, 2015 4:30 pm

Hi all,

I got better (cured entirely) the first time because I stopped taking the pill (Microgynon). My body returned entirely to normal within a month. I haven't taken anything hormonal since, but my VV symptoms have started up since a yeast & bacterial infection back in February.

I've seen multiple vulval dermatologists who have confirmed the diagnosis of Vestibulodynia, and as my symptoms are exactly the same as they were the first time (which went away completely off the pill), I have ruled out any possibility of having LS.

A2015

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