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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

Hello!

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


Finally relief!

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Finally relief!

Post  jackie333 on Mon Jul 03, 2017 1:02 am

I truly felt that this day would never come--but I'm happy to report that I am for the most part pain free most days.

After about a year and a half of applying a compound cream with little to no help--I finally read about the benefit of medication.
I pretty much begged my doctor for a prescription and I was prescribed Lexipro.

I take one tablet once a day and I am ever so much better! I have also found that on the rare day I have a flair up---taking a dose of Alka Seltzer and lying down for about an hour helps.

I do hope you find relief as I totally understand the pain and frustration-

Jackie

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Re: Finally relief!

Post  mary jane on Tue Jul 04, 2017 8:32 am

thanks for posting! so interesting an SSRI helped you and not a tricyclic ! wow ! super!

I just wanted to tell you that since I've read you also had lower back pain and IC, it sounds like you have a very mild form of Central sensitization. I have the same issues, lower back pain, tailbone, TMJ plus IBS, but no IC (yet). My aches and pains move around a lot too!

I am starting to think some of us have CS and not vulvodynia, it just means the nervous system is sensitive and creates all the pain syndromes Smile
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Hi Mary Jane

Post  jackie333 on Tue Jul 04, 2017 1:37 pm

How interesting that you mentioned the CS-- I was thinking Fibomyalgia,- as the pain moves around.
The OB GYN I was seeing wanted to try physio and even pain management lessons but once the Lexapro started working I decided to take the easy way out.
I did try the physio one time and it triggered my lower back pain.
I have had bladder spasms  for many years and was diagnosed with IC years ago--now the Vulvodynia sometimes manifests with terrible urethral pain when I void and I found the Alka Seltzer helps tremendously....I researched and  found that there is a product called Alka Seltzer Gold that doesn't contain the aspirin----and I ordered it from Ebay--

I would love to stay in touch with you--my private email address is: jackie92646@gmail.com
If I can offer any suggestions or share ideas it would be my pleasure. Only someone who has experienced that pain, truly understands it--
Bless you-
Hugs-
Jackie

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Re: Finally relief!

Post  mary jane on Tue Jul 04, 2017 2:41 pm

Hello!

I do mindfulness now, I have some apps on my phone and can just do it anywhere, anytime. What kind of pani do you have? I have buzzing, electric shocks, everything except burning. the buzzing nerves also move around a lot, I even get buzzing nerves in my knee or foot.
I'm really busy with a new job and stress, but you can always Pm me!

I take magnesium for the CS. I have a history of anxiety and depression which may have contributed to CS.
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Hi Mary Jane

Post  jackie333 on Tue Jul 04, 2017 3:01 pm

My pain is what is known as generalized and the Dr. said that trying to avoid anything that would irritate me is what I have to do--
I wash my white cotton underwear in antibacterial soap--and then rinse in plain water after a regular wash---

The pain travels from inside to outside and varies in intensity when I have a  flare---but I haven't had the type of pain lately that knocks me off of my feet.
I too suffer from anxiety--and the Lexapro serves a duel function as it is an anti anxiety med.
Interestingly enough, my OB GYN was not the one to prescribe the Lexapro-- I called my GP and explained the problem--He prescribed it over the phone--I was thrilled when it started working. I feel as though I have my life back!

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Re: Finally relief!

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