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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

I can help you!!!!

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I can help you!!!!

Post  Ar77070 on Fri Sep 27, 2013 6:38 pm

I'm 19 years old and have gone through hell for the last year and a half. It started last summer with a urinary tract infection, and the doctors also noticed a dangerously high count of protein in my urine. A few weeks later I got yet another UTI and took antibiotics to treat it again. Then in September I had a mirena put in which is a form of birth control that blocks semen from going to your Fallopian tubes and traveling to your ovaries. This caused many problems for me: decreased sex drive, terrible mood swings, painful sex, etc so I had it removed a few months later. Prior to having it removed, I had yet another urinary tract infection. I started to get really worried that I had kidney problems but every doctor I went to told me everything looked fine. Then in march I had my most recent urinary tract infection which was so severe I had to go to an emergency room at 1 am and they said I had so many things including blood and minerals in my urine that I probably had a kidney problem. My protein count in my urine was also high still, and at this point I was experiencing the burning of vulvodynia every day, which began around the time I had my mirena put in. After blood work and more doctors they still couldn't tell me what was going on. At this point I had stopped having sex all together because the pain was so unbearable. I had so much trauma occurring to my poor lady areas that I could find no relief. I also had switched to the pill for birth control so I was taking hormones again. For the past four years I also was prescribed minocycline for acne which I took daily and only now realize how damaging that was to my immune system and body. So fast forward a few months and I have no more UTIS but still consistent vulvodynia burning and pain. I was suggested anti depressants but I knew that was a path I didn't want to go down. So here's where my story can help you. I decided that all the chemicals (antibiotics for years, hormones) were actually hurting and destroying my immune system, throwing off my pH balance, and causing hell for my sex life.

My holistic approach that I carefully compiled together from various websites that has finally given me seven days and counting of complete pain free living is as follows:

1) go without sex for two months. Your nerves are sensitive and damaged, they need to recover in peace
2) stretching!! I belief this had this biggest help by far. Stretch everyday!!!!!Regular work out stretches , especially that work your upper legs, glutes, and abdominal area help strengthen your muscles which most likely are weakened and having spasms your are unaware of that cause pain
3) eat a decently healthy diet, love your body!! It will do wonderful things and help regenerate and heal
4) when you feel the burning , tighten your vaginal muscles and release , repeat many times.. It ended up actually reducing burning quickly for me
5) extremely hot baths with oatmeal powder or baking soda give relief for flare ups
6) completely stopping all medication (birth control , anti depressants , antibiotics)
7) buy cotton tampons - available at heb in organic section
Cool sleep without underwear- this tremendously reduced my burning at night
9) once a month put baking soda suppositories up your vagina before bed for pH balance
10) avoid anything bumping against or hitting vaginal nerves
11) on weekend nights when I was drinking a few beers I noticed the pain was less intensified -- do not recommend relying on alcohol to ease pain
12) do this simple routine for atleast three months and I hope you can experience relief like I have. I have suffered and now your pain, I hope to help as many of you out as I can. Please try this holistic approach before further damaging your bodies with more medicine and treatments.

Stay strong, in time your body will heal itself if you let it!


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Re: I can help you!!!!

Post  tinkerbelle2 on Mon Oct 07, 2013 7:02 pm

Thanks for this babes, I'm taking all you said on board! Fingers crossed for us all. I love you 

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Re: I can help you!!!!

Post  Katiej on Tue Jan 09, 2018 10:17 am

How are u two guys doing now? Hope this whole thing is behind you. Be nice to know u have moved on even though im sure this site is the last thing u wanna visit even just a conformation ur all okay now would be a great benefit to myself and others .


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Re: I can help you!!!!

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