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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 …

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


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 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

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 …

Comments: 0

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

Could use some advice

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Could use some advice

Post  Guest on Sun Feb 23, 2014 9:01 pm

Hi all,

Sorry for the long post, but I haven't even mentioned to my best friend that I have this, kinda need to get it out.

I've been living with this for over an year and a half consistently. Although, looking back I had flares since a teenager (I'm 31), but didn't know at the time what the occasional bout of burning/itching was. Back then, it would last for few weeks and go away. I never even mentioned it to my gyno. I had normal, pain-free sex throughout my twenties, with no major problems, like yeast, etc. I did get diagnosed with ovarian cysts around 21, but they never caused any issues. I was on and off the pill during this time as well. Three years ago, I got involved with my ex, aka "The Monster"; it was an emotionally and physically abusive nightmare. He degraded me sexually, verbally, in every way imaginable. During the early part of the relationship, i get a terrible case of BV, probably from his constant forcing me to have sex in different ways, and his refusal to wear a condom. He accused me of cheating on him and having an STD, which we know BV isn't. I started several rounds of antibiotics, followed by Diflucan, you know how that goes. I broke up with him for three months, and my symptoms disappeared on their own. But ladies, please don't judge me , for some absurd reason (i was at a very low point in my life emotionally), i took the SOB back, and suffered in hell for six more months. Sure enough, the symptoms returned. More antibiotics, boric acid, diflucan. No relief. The abuse escalated, and I finally woke up, got a restraining order and got rid of him for good. That was a year and a half ago. The symptoms were constant after all this time. Finally, I got sick of my OB giving script after the script of the same stuff, and after an argument asking why she refused to do a culture, I went to another dr. At this point, I was think I had vulvodynia. I few more wrong turns with drs, and I finally saw a vulvar specialist in October who diagnosed me with vulvodynia/vestibulitis. Since then, I have been doing all I can to get better. I've been doing pelvic floor pt for almost four months, I have extremely hypertonic muscles with lots of trigger points, particularly on left side. I use dilators and some biofeedback. Dr had given me topical Elavil w/ baclofen. Didn't do much, and lidocaine 5% stung. I tried supplements, magnesium, ALA, calcium citrate, saw nutritionist who put me on candida diet (way too hard to stay on). I recently started acupuncture, nothing so far, but only had two sessions. I have hardly any gluten. I'm really not seeing any major relief. I don't get stabbing pain, but a constant burning/itching in vulva that extends to rectal area. Not major urinary issues. Also have low back pain, and radiating pain in left butt cheek (feels like I'm sitting on tennis ball on left side). I have history of IBS with chronic constipation, although Miralax helping with that. Dr. wants to try me on systemic meds, gabapentin or Topomax. I was on antidepressants several years ago (for depression). i gained a ton of weight, and felt like a lifeless zombie. Don't want to go back to that. I'm trying so hard ladies, but feel like nothing I do is helping. I've been single since I ditched that idiot over a year and a half ago, no sex whatsover since then. Honestly, I have no libido, and am too scared to have sex. How will I ever be able to be with someone again, I'm starting to get hopeless. Any suggestions for anything that helped? please, something positive. Thanks,


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Re: Could use some advice

Post  zarli on Tue Feb 25, 2014 12:30 am

Firstly I think you have a lot of work to do on LOVING YOUR SELF, you would benefit so much with learning to love you and your body. If you don't want to take meds that's fine but please search out some alternative treatment on healing YOU, as a whole not just vulvodynia. Your body needs to be cherished and you need good support around you such as specialist and doctors AND alternative healing people. Even seeing a counsellor would help you get your feelings out and release a lot of negativity. If you write down on paper every negative thought you have in a day you would probably be surprised what you have told your body in just one day.

Secondly tell yourself what a great job you are doing in all the things you have mentioned you are trying. It truly is huge to embark on a journey of healing and you are on your way.

Many happy thoughts sent your way and all will be ok for you, believe in your self.


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Re: Could use some advice

Post  lonelyone48 on Mon Mar 03, 2014 6:57 pm

I've taken gabapentin since last June and it no longer works for me, but we are all different and it may work for you. At the time I was also on the antidepressant effexor and gained over 30 lbs...not on the effexor anymore and withdrawal side effects still persist. Lidocaine 5% cream numbs me to the touch but I still have the throbbing and burning(which actually feel like someone is cutting my vulva.) Try sitz baths as well. I have severe unprovoked vulvodynia. Sex is not an option for me and therefore I don't date anymore. Praying you find something that helps.


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Re: Could use some advice

Post  Katiej on Tue Jan 09, 2018 9:59 am

Hey guys. Just wanted to know how u are all doing now? Guest? Did you find some relief. I know im four years late responding to this thread. From the outside it looks like emotional turmoil. I wonder if you healed ur emotions would the vvd follow. Curious to know if u are better now . U probably would not wanna revist this whole thing if u are better ? But it would benefit myself to know four years on u are okay. Even if thats all u said. Thanks. Katie


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Re: Could use some advice

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