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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


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.

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 …

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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


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

suffering in silence?

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suffering in silence?

Post  missnik1 on Mon Jan 09, 2012 8:59 pm

i feel like ive been suffering in silence for the past couple of years. i have trouble opening up about my issues..my moods definitely reflect my pain though. but no one around me seems to understand because they dont know what im struggling with on a daily basis. i could use some support from others in my same situation, i just turned 23 have had vulvodynia for past 2 years. im also in a long term relationship that is heading south fast thanks to the detrimental effects of this frustrting disorder! i need something to be hopeful about , to look forwrd to, new hope i guess. ive tried seveeral treatments with no relief and im sick and tired of making doctor appointment aftr apointment. i dont have the best of insurances (just state). so i feel like im not getting the best of care either. like my problems are getting brushed aside. i need tips on how to find a good doctor and how to make the most out of my appointments. i get anxious beforehand and feel like i leave a lot of things out during our discussion. and just leave there not feeling any better about myself. how do i open up and make it sound as serious as it really is? i want the doctor to understand my concerns and my pain.


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Re: suffering in silence?

Post  Sarah001 on Tue Jan 10, 2012 7:56 pm

Write it down if you forget stuff then you have the paper as a reminder and a distraction to look at if you struggle to open up. I can't help with the insurance issues becuase I'm in the UK so I don't fully understand it but don't let them fob you off, write it down so you get everything out in the appointment.

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Re: suffering in silence?

Post  ButterflyLiz on Wed Jan 11, 2012 8:06 pm

I second Sarah’s suggestion; I get nervous & forget things too and taking along notes for the doctor is a brilliant way to get around this. If you look at my post on another thread here: http://www.vulvodyniasupportforum.com/t648-my-belated-story you can see the layout I use. I take two copies along to appointments; one to refer to myself and one the doctor can keep in my file. Don’t be afraid to include the psychological impact this condition has had on you. I hope reading around the forum has helped you to feel less alone. There are lots of us out there! x

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Re: suffering in silence?

Post  unga on Fri Feb 17, 2012 1:48 am

hello, I totally understand what you're feeling, after 3 years I have just found a doctor who is understanding and exploring various treatment methods with me. This happened because I pretty much had a breakdown at the reception of the doctors surgery and the receptionist who had seen me there often told me there was a new doctor at the surgery who she thought would be hepful, and she was...this was a stroke of luck, but it shows that they do happen. My advice to you, as some other people have said, is write everything down and then make sure you say it, it's easy to get distracted or to belittle your experience... do not do this, this is a serious situation that affects all facets of your life...tell them everything that has been affected. I hesitate to write this but I have found male doctors to be unhelpful (this is only my experience I am not at all suggesting that a male doctor could not be helpful; sadly one of the ones I saw insinuated that I didn't know how to have intercourse properly, if I wasn't so offended and embarrassed I probably would have punched him), and the most helpful doctors have been young women. I think just being calm and making sure you say everything you want to say is important. best of luck to you Xx


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Re: suffering in silence?

Post  noni on Fri Feb 17, 2012 3:13 am

Hey Miss!

Your dark feelings are normal with this condition. We've all been there.

Have a look around and read about us. We're like sisters on here.


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Re: suffering in silence?

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