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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


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

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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