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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 …

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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 …

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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

Steroid Ointments and Creams

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Steroid Ointments and Creams

Post  Maple on Mon Nov 30, 2015 5:32 am

I've had two cases of vulvodynia. They've been very different in terms of symptoms and types of pain, I figure I'll share how I rid myself of the first one (4 months). The second one, I still have but it has been getting significantly better (at 4.5 months presently)

The first:
-Cause: most likely by monostat 7 suppositories
-Symptoms: started with a typical yeast infection, but after treatment, vulva remained dry and stinging pretty much 24/7, peeled like a sunburn due to how dry it was.
-Doctor: Had tests for yeast, BV, and trichomoniasis (I wasn't sexually active at that age) and came back negative for all. Proceeded to be stuck in a ridiculous cycle of doctors.The 5th doctor I saw, the one who prescribed the ointment, told me that this was an "itch scratch cycle", and I swear I was not scratching it, apparently normal movement/underwear/anything can effectively "scratch" already weak skin.
-Showering: She also had me use Cetaphil non-soap cleanser. Normally I avoided soap in that region, but she said in order to remove any shampoo/conditioner residue this would be necessary.
-Laundry: I began double washing underwear in hypoallergenic detergent, though I don't believe it was the cause (because I went back to the regular stuff a few months after), it helps to eliminate all possible irritants down there.
-Cured: The ending cure for this was a steroid ointment (0.1% betaderm), I had tried a few steroid creams before this was tried, but for some reason the creams didn't work. The ointment was used twice daily and felt better within a week, but I continued to use it for the prescribed two weeks. In the first month or so after that I would occasionally have flare-ups and have to use the ointment 2-3 times but after 2 months I was rid of all symptoms for 2 full years.

The second:
-Cause: occurred after yet another yeast infection, treated with terazol cream. (Also occurred 4 months after starting birth control pill, but I believe that wasn't a large factor/cause, and will restart pill if/when I get everything cleared up).
-Symptoms: Vulva swelling, sometimes very red, periodic greyish discharge that stings on contact with skin. Stinging and burning pain.
-Doctors: I've seen 7 of them. Been STD tested twice, and vaginal cultures 3 times, everything is negative. Most credible doctor: infectious disease specialist.
-Tried (failed): Cetaphil + betaderm + new detergent = not cured, caused another yeast with the steroid ointment (betaderm). Probiotic suppositories = Resulted in yeast. Lactic acid tubes = soothing, but effectively did nothing. 7-diflucans over 7 days, this was a dumb idea by an idiot doctor. Improved the problem for about a 10 day period, then got worse.
-Tried (successes): Epsom salt sit-bath. Blowdrying down there after showering, swimming, or sit-bathing. Taking a Benadryl every night To relieve itching, therefore prevent unconcious scratching (whatever it is isn't an allergy because I tried going days without pants and with sink showers to wash my hair, and no gain). Hydrocortisone (0.5%) cream on the outer lips only (even though most of the pain is on the inner lips). Deep massage of groin region surrounding vulva trying to loosen muscles in the area.

Few things about me:

I'm a frequent swimmer. Presently I only swim about 4-5 times a week, but was at 11 times a week at my highest. Leading up to the first one I spent a full summer with biking as my only method of transportation and was swimming in a saltwater pool 6days/week. Thankfully, the problems set in after I was back at home and able to ditch the bike.

The second bout set in midway through a summer of biking as a primary transport.

I personally would much rather blame biking than swimming, but gynocologists disagree. I've tried quitting swimming but have never had any improvement from quitting, and have often gotten worse in my time off.


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Re: Steroid Ointments and Creams

Post  WaahwaahUK on Tue Dec 08, 2015 5:16 pm

Thank you for this post. I'm going to try Epsom baths actually, and this has encouraged me more so.


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