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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


please help me - my inner labia are stretched out and disappearing into outer labia

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please help me - my inner labia are stretched out and disappearing into outer labia

Post  emmajane on Wed Aug 10, 2016 3:28 am

I have Ehlers Danlos, a genetic disorder that causes problems with connective tissue. My skin, muscles, ligaments, vasculature, etc are all super-stretchy. People with Ehlers-Danlos are prone to pelvic prolapses. Nothing holds firm, everything stretches.

I have terrible pain and itchiness in my vulva. It is all day long, but especially bad at night. I avoid sex because when I'm itchy, it makes it unbearable; and when I'm not itchy, I just don't want to mess with my vulva at all. Any contact at all makes it immediately itchy.

My inner labia are disappearing. They have become just part of the outer labia. I can still tell which part of the skin used to be inner labia, because it is smoother and pink. But other than colour and texture, it just looks like part of the outer labia. My perineum also feels like it is stretching beyond capacity.

I feel like my pelvic organs are falling down and my skin is stretching to accomodate. Like if you blew up a latex glove past capacity, the creases between fingers would fill in and the fingers would shorten. I think that is what happened to my inner labia. It is very painful.

Is this possible?

I know that lichen sclerosis can cause the inner labia to become confluent with the outer, but I have no white marks, so I don't think it is that.

Also, I think my cervix has dropped way down inside my vagina. It is so close to the opening now that I can't keep a tampon in. And I can't have a bowel movement without supporting my perineum.

Please help me if you have any information, I cannot find anything about pelvic collapse causing this kind of problem. The doctor sent me for a colonoscopy, which was fine.

I think I posted this in the wrong spot initially, so I tried to delete it over there. I am sorry if you read this twice.

emmajane

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Re: please help me - my inner labia are stretched out and disappearing into outer labia

Post  emalita on Wed Aug 10, 2016 1:11 pm

I'm so sorry you are having to go through this.

Have you been seen at a women's clinic where they specialize in pelvic floor disorders like pelvic organ prolapse? I think you really need to be evaluated as soon as possible so that appropriate treatments can start before things get worse.

I had a scare with a doctor thinking I had lichen sclerosus, but thankfully I was misdiagnosed. Unfortunately, from what I've read and have been told on LS forums, whitening is not always present. However, loss of labia and severe itching are very large symptoms known to LS. Have you had a biopsy to rule this out?

I don't know where you're located, but in the US there are quite a few good hospitals that deal with things like pelvic organ prolapse. It's vulvodynia that is tricky to find a specialist for. Below is a link to a hospital in my area to just give you an idea of the type of facility I was referring to.

http://www.froedtert.com/womens-incontinence/conditions

I wish you the best of luck!

emalita

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Re: please help me - my inner labia are stretched out and disappearing into outer labia

Post  emmajane on Wed Aug 10, 2016 6:44 pm

Thank you so much for your reply. I will ask for a referral to a gynecologist. I am not in the US, but in Canada. We have free health care, but we have less options. Because the government is footing the bill, we do not get to choose who we see quite so much. Our GP must refer us to a specialist, and sometimes they either do not want to do this, or they have a specialist in mind. I will see who I can get him to refer me to. Maybe I have ruled out lichen sclerosis too soon. I have not had a biopsy, perhaps I should be asking for one.

Thank you again for your kind response! It is just wonderful to be able to communicate this issue (even on an online forum). It is such an embarrassing and taboo problem to have IRL.

Smile

emmajane

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Re: please help me - my inner labia are stretched out and disappearing into outer labia

Post  emalita on Wed Aug 10, 2016 11:45 pm

I'm here to listen and provide support in any way I can  Very Happy  PM me any time if you feel like chatting.

Keep us updated on your progress. I hope you are referred to a good specialist who can help you get some relief!

emalita

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Re: please help me - my inner labia are stretched out and disappearing into outer labia

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