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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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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 …

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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.

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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 …

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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 3:35 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 …

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Will there be an end?

Fri Apr 27, 2018 12:06 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.

Thu Apr 26, 2018 11:46 pm 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


New Here ~~~~

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New Here ~~~~

Post  daisiesfordays on Mon Aug 04, 2014 5:07 am

Hi all,  I love you 
I'm new here!
I'm a junior in college and was recently diagnosed with VVS. I had been taking birth control for the past year and 2 months before getting diagnosed, since it was the only thing that worked for my skin. Of course, I'm one of those people who hates hates hates blood, so I would always skip the sugar pills and start a new pack.
I got a yeast infection once, and didn't think much that the applicator hurt to use. The YI went away, but I went to gynecologist anyways. When she swabbed me, I nearly fell off the table! She was surprised and asked if I had any problems with tampons (I hadn't in the past).
Long story short, YI came back because of antibiotic she prescribed me. It was awful and the gynecologist couldn't even examine me because just touching the vestibule with a q-tip set me off the table.
By now, I'm on my third doctor. I just finished my period (had stopped taking BC pills) and the itching came back. I was getting really tired of taking Diflucan, so I looked for some home remedies. I tried Gentian Violet, which only ended up burning my vagina. Really fun! (I think that's why I'm having issues now).

I finally found a specialist in my city, nonetheless. I went to visit him, and he diagnosed me with VVS and secondary vaginismus. He said it was due to my BC pills. So basically, I can never take those bad boys again. I've been using estrace cream which helped a TON, but ever since I started on spirolonactone 2 days ago, it's been acting up again. I just feel burning on the left side, but it's not ALL the time? And it's not super painful, just annoying! Any advice?
Thanks! Nice to meet all of y'all

daisiesfordays

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Hi there!

Post  907hopeful on Mon Aug 04, 2014 10:51 pm

I just got a note that you posted on one of my old posts. I have not been on this forum for a while. I don't have time to write my whole story out, but you might be able to find it if you search for my old posts. In a nutshell I have vulvodynia which started out as irritation when I used tampons and through multiple creams and treatments later ended up as severe burning and vestibulitis. I found a dr in AZ and spent lots of money to travel and see him. He has been an absolute life saver. He retired from the Mayo clinic and opened up a clinic just to treat chronic vulvar/vaginal issues. I am on month 4 of treatment and would say I feel 75-80% better. Google him - Dr Fowler in AZ. His website seems a little quirky (more like a business than a dr's office), but he knows his stuff! He has me on a regime of anti-fungal, anti-bacterial and estrogen creams. Send me a message if you want to know more. And keep your head up. This is a nasty disease and it is easy to get depressed and feel alone and isolated. Ive joined another chat board that has been very helpful and has pulled me through this mess. Having a support network is priceless!

907hopeful

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Re: New Here ~~~~

Post  sailor_moon on Tue Aug 05, 2014 8:54 pm

Welcome to the forum! Smile

Do you have any other symptoms besides the vulvodynia? How old are you?

What makes the doctor say that BC pills caused the problem? Has the doctor done a 4 week blood test? Doind a blood test once a week to see what your hormones are actually doing? Hormone imbalance can cause a lot of issues, especially if you have come off the pill. I am just about to go through this test nyself after seeing over 10 useless doctors who would not check my hormones.

If it is on your left side only it may be nerves, or it could be to do with an internal issue. There are so so many different things that could be causing it.
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Re: New Here ~~~~

Post  daisiesfordays on Wed Aug 06, 2014 2:26 am

907hopeful -
I'll definitely send you a message! I go to Dr. Brooks at AZ Vulva Clinic.

sailor_moon -
Thanks!
Nope, this is it. I'm 19. I had never had any issues before I took BC, and after stopping it for a month and applying Estrace cream to the opening, the q-tip test no longer hurt, just felt a little sensitive when I was swabbed, but no way like when I almost fell off the table the first time!
I went in yesterday, (his nurse had seen me about 3 weeks ago and noted that the skin was looking much better) and he noted there was a lot of redness and tenderness now. I think it may be due to my taking of spironolactone (anti-androgen). It was only after I started taking it that I started feeling uncomfortable again down there (after a month of feeling GREAT!!! I was able to use the 5th dilator in the pure romance set with very little pain, just some discomfort from the stretching) and I was doing some research today, it seems that the vestibule needs a balance of testosterone/estrogen, and my theory is that my testosterone level was already low, so the anti-androgen therapy (again, for my face  tongue ) could've reduced it so much that it was near 0! I'm debating getting a hormonal blood test done when I go in to get a shot at my GP on thursday. Although, am going to go see specialist tomorrow, just going to request the estrogen/testosterone compounded cream. He seemed perplexed and couldn't figure out how it could be the spironolactone, but apparently it's a new procedure to do a compounded cream of both testosterone and estrogen.
Oh, before I forget -- he examined me and said the sore spot on the left is my muscles spasming, so was prescribed a valium suppository. Helped a TON.

daisiesfordays

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Re: New Here ~~~~

Post  emalita on Tue Apr 05, 2016 1:56 pm

907hopeful wrote:I am on month 4 of treatment and would say I feel 75-80% better. Google him - Dr Fowler in AZ. His website seems a little quirky (more like a business than a dr's office), but he knows his stuff! He has me on a regime of anti-fungal, anti-bacterial and estrogen creams. Send me a message if you want to know more.

907hopeful - How have things been going since seeing Dr. Fowler? I just started week three of his treatment.

emalita

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Re: New Here ~~~~

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