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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

Desperate for help - Need some support with this condition - driving myself mad!

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Desperate for help - Need some support with this condition - driving myself mad!

Post  JS007 on Tue Dec 15, 2015 1:53 pm

Hi, I am really keen to see if anyone can help me or give me some comfort!! I have finally been diagnosed with Vulvodynia after 5 months and have been put on Amitriptyline by the gyneo - at least she new about the condition when all the swabs came back negative!!! My trigger appears to be when I go to the toilet, after I have been for a wee or a BM the whole area starts kicking off!!! I feel like I have nappy rash and issues near the opening to urethra? Has anyone else experienced this??? I don't know what to do, such a normal function is becoming a nightmare for me...I just want to feel normal again?! I am on 40mg of A and have been told to increase gradually - does anyone know what the right dosage should be??
I am very anxious and have sadly been depressed over worrying what all of this is about - I just want it to stop and not be in discomfort everyday either waiting or going to the toilet! thanks Smile


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Re: Desperate for help - Need some support with this condition - driving myself mad!

Post  PainBlogger on Tue Dec 15, 2015 3:45 pm

My main trigger is emptying my bladder (and sometimes emptying my bowels triggers the urethral irritation also). Not only do I often get pain, my bladder doesn't empty very well and it takes ages. I always try to make sure I drink loads of water and/or herbal (non-fruit) tea so that when I do go, there is always plenty to flush through and it's more dilute. Have you tried rinsing with cool water after emptying? Have you cut out all possible triggers for bladder and urethral irritation (such as caffeine, fizzy drinks, citrus fruit juices, acid foods like vinegar, artificial sweeteners, alcohol, and even decaf tea and coffee)? Some people find a low oxalate diet helps. Also sitting in a bath (or portable bidet - you can get these on Amazon and they sit on the toilet so you don't have to fill a bath) with sodium bicarb/baking soda or Epsom salts can help. My doctor told me to use Oilatum bath emollient in the bathwater - I get the kids one as it is fragrance free - again, 600ml bottle from Amazon works out cheapest.

As far as the right dosage of amitriptyline - it depends on the doctor and on how you get on with it. Anything from 10mg/day to 75mg/day is quite common for pain. My doctor wanted me to go up to 50mg but I had to stop it at 30mg/day as I got palpitations (but I'm on various other drugs that make side effects more likely). Ideally, you want to be on the highest reasonable dose that you can tolerate but the lowest dose that helps - if that makes sense.


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Re: Desperate for help - Need some support with this condition - driving myself mad!

Post  sarisbaris on Thu Dec 31, 2015 6:18 am

Please read my post in the 'vulvodynia info' forum titled 'cured from vulvodynia...' My trigger was different and when it flared last I was pregnant so the docs couldn't give me much because it would harm the baby. This forced me to keep looking for an alternative doc who finally fixed it. I've been pain free ever since and was able to give birth to my son without complications. I'm so sorry you're going through this. Please read my post.


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Re: Desperate for help - Need some support with this condition - driving myself mad!

Post  sarisbaris on Thu Dec 31, 2015 6:19 am

Although I did have constant urinary tract infections along with the vulvodynia that she fixed as well. FML. I've been pain free since then. Let me know if you have any questions.


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Re: Desperate for help - Need some support with this condition - driving myself mad!

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