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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 5:13 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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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: 8

Gabapentin Gel. or other topical creams

Thu May 10, 2018 10:43 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 4:43 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 …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 4:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 1:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Fri Apr 27, 2018 12:46 am by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


Any chance this could be something other than vulvodynia?

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Any chance this could be something other than vulvodynia?

Post  mythreesons on Wed Aug 20, 2014 6:45 am

I'm 45 and was diagnosed with vulvodynia 2 years ago. I was put on amitriptyline and vagifem and got the symptoms pretty much under control for almost 2 years, with just minor flare-ups whenever I'd have to wear a pad during my period. I weaned myself off the vagifem after the first 6 months and still didn't have a flare-up. Then in mid-June of this year, I started getting vulvar inflammation and burning again. I went back to my doctor (who is clueless when it comes to this condition) and renewed my prescription for vagifem and increased the dosage of the amitriptyline to 50 mg per day.

I have yet to get symptoms back under control and it's been 2 months now. I've been taking calcium citrate and magnesium and somewhat following the low oxalate diet, in addition to continuing to take the ami and vagifem.

I can have some days where I feel quite good and I feel hopeful. The last 4 days were good, but then today has been horrible again. I have had hemorrhoids since my first pregnancy 15 years ago and they seem to flare up too when the vulvodynia flares up. I also feel like I'm swollen inside. When this flare-up first started, I was definitely swollen outside, but now I feel like the swelling is all internal. Some days I can barely sit. I've also noticed the last few nights that the vagifem is difficult to insert, as though there is something at the top of the vagina preventing it from being fully inserted. Yet when I check myself with a finger, I don't feel anything abnormal, other than feeling swollen. So maybe it's just the swelling preventing the vagifem stick from going all the way in, I don't know.

I saw my doctor yesterday and I'm waiting for a referral to a gynecologist, which can take some time. This is probably wishful thinking, but I keep hoping this gynecologist will tell me the first one 2 years ago was wrong and I really don't have vulvodynia and that what I do have is very simple to fix. The thought of continuing to suffer with something for which there is no known cure just makes me so depressed.

mythreesons

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Re: Any chance this could be something other than vulvodynia?

Post  bearferret on Wed Aug 20, 2014 8:59 am

Are you in the uk? If so you can make an appointment at your GUM or sexual health clinic. They were so much more helpful than my doctor who told me to out up with the pain. Mine too felt swollen to me but my doctor told me it was normal. Sexual health doctor found my problem straight away. Amitryptilin was the first treatment but he said if itddidn't work there were other options. I cried in his office. It was a relief to have someone who wanted to help. Luckily amitryptilin worked but its only been about two weeks since I stopped taking it and I have a very understanding partner. Hope you get the help you need and deserve. X

bearferret

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Re: Any chance this could be something other than vulvodynia?

Post  mythreesons on Wed Aug 20, 2014 3:46 pm

I'm actually in Canada. I'm waiting to see the same OBGYN who delivered my kids and hoping he will be knowledgeable about this condition and be willing to keep at it until we find something that works. My current GP seems to have no clue how unbearable these symptoms are.

mythreesons

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Re: Any chance this could be something other than vulvodynia?

Post  bearferret on Wed Aug 20, 2014 4:00 pm

Hope they sort you. My GP was worse than useless as well. Hugs and support. X

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Re: Any chance this could be something other than vulvodynia?

Post  sailor_moon on Thu Aug 21, 2014 12:31 pm

There are many different health issues that give the same/similar symptoms as Vulvodynia. Vulvodynia can be caused as a symptom of a bigger problem going on.

Anything and everything from skin conditions to allergies (both contact irritants and food allergy), hormones, endometriosis, PCOS, low iron...so so many different things!

Have you got any other symptoms apart from vulvodynia? Does it get worse or better at different times of the month?
Have you had blood tests and ultrasounds ect?

Finding a decent doctor is the hardest thing. I'm up to doctor number 12! I am hoping he can fix me. I am undergoing a month long blood test to see what my hormones are doing. He is thinking my problem is hormonal as I have many other symptoms.

Do your research and see if there is a vulva specialist.
you can get a referral to. Find someone who specialises in vulva disorders.
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Re: Any chance this could be something other than vulvodynia?

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