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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: 3

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

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

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: 6

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: 3

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0


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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Location : USA

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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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