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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 …

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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

Please tell me this can get better

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Please tell me this can get better

Post  Bx11 on Mon Feb 19, 2018 12:03 am

After 8yrs of pain and suffering I’m just about at my wits wend. I feel I have missed so much with my husband and put him through so much. The lack of sex is killing my sex drive and we have been robbed of so many special nights including engagement dn wedding. Now it’s stopping us trying for a baby when all my fiends are on number one or two and the family who are in the dark are getting suspicious. I don’t no who to turn to and the pain today has as good as had me in tears. I feel like all the options lead to a dead end and I don’t no what to do anymore. I cannot get any help through the Doctors and feel totally lost and alone. Sad


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Re: Please tell me this can get better

Post  anon99 on Mon Feb 19, 2018 2:10 am

Please do not feel discouraged. Know that you’re not alone and many of us can empathize with you. I found during my toughest times that counting my blessings helped to keep my psyche in check. If you dwell too much on the pain, it can take over you.

I will pray that you find relief from the pain. Please don’t give up. There were times when I hated my life because of the pain. However, today I am better and I’m glad I didn’t give up. Please know that better days are ahead.

Sent from Topic'it App


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Re: Please tell me this can get better

Post  Alana3 on Wed Mar 07, 2018 3:26 pm

You will make it out just fine! I understand the discouragement, but know that YOU are better than this shit disease. Stronger too!


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Re: Please tell me this can get better

Post  sarisbaris on Fri Mar 09, 2018 4:05 am

I'm so sorry you're going through this. Don't lose hope! I am cured and I battled it for 15 years. (It doesn't take that long to heal). Once I figured out the cause and did the protocol, I was fine. Literally fine. I can have lovely sex and it's great. So now I troll the internet trying to help others. Here's my blog. Read through it.


Lately, I've been talking to women over the phone to help them come up with a plan and place to start, since there is so much to do. I just did this alone for years and I just want to help.

Please read and if you want to talk, just email me. My email address is on the bottom of the blog.



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What kind of treatment are you trying?

Post  wuhujen on Sat Apr 14, 2018 7:45 pm

I am so, so sorry for the pain you're experiencing (both physical and mental/emotional!). What types of treatment are you doing? My symptoms started improving dramatically after finding the right drug combination and an amazing physical therapist. In PT I don't just do exercise, but we use a combination of dry needling, trigger point therapy, and guided exercises. I highly recommend finding someone who has expertise in pelvic floor physical therapy. What part of the world are you in?


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this may help

Post  amf329 on Sun Apr 15, 2018 11:31 am

Hi everyone,

I wanted to share a free resource with all of you that's been hugely helpful to me in healing!


It's a free webinar that I participated in about a year ago and then signed up for Lorraine's course, which has been very beneficial.

If nothing else, listen in to the webinar - you'll feel heard and understood and most definitely not alone. It's free, and I told her I wanted to share it here because I feel so many of you would benefit from it.



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Re: Please tell me this can get better

Post  Guest on Sat Jul 28, 2018 6:33 am

I am trying to get the word OUT!!! 20 years of “vulvadynia”, ic, vestibulitis. Whatever the docs want to calll it. It’s been beyond depressing and has made me feel downright crazy at times. Incredibly painful, living in silent pain, going to doctor after doctor just to hear that “my mind is causing my vestibular area to flare up”.
It’s a VERY hard bacteria to find!! Does NOT show up in urine cultures!! There’s a very specific test to find it and you MUST insist on being tested!!!! PLEASE BELIEVE ME!!! After 20 years of this craziness I FINALLY was diagnosed with this bacterial uti and THIS is what has caused the vulvadynia!!!
Doctors don’t even know about this. My new primary care tested me after showing up with a Walgreens uti rest showing positive leukocytes. The urine culture came back negative as usual. She had a sad talk with me about vulvadynia.
I don’t know what came over her to send the urine off to a lab and get it checked for ureaplasma, but she did. I am SO grateful. I am FINALLY HEALING quickly!!
Ueraplasma only responds to certain antibiotics. I’m on doxycycline. 14 days and it may take several rounds. This is a serious bacteria and it can kill you.
Some doctors will dismiss this test and bacteria and say it’s part of our flora. NO-INSIST. If it shows up as an infection because it’s colonized, it IS the cause of vulvadynia.
I’ve been through biofeedback, neurontin, creams, specialist after specialist.
I’ve found small handful of other ladies on the internet who have posted the SAME about their ureaplasma diagnosis. They are doing cartwheels like I am!!!
I am really trying to get to word out!!! I promise you ladies!!!! There is a CURE!!!
DO NOT GIVE UP!!!!! Trying to reply to as many women as I can!


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Re: Please tell me this can get better

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