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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 …

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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: 8

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.

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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 …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


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

JS007

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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.

PainBlogger

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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.

sarisbaris

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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.

sarisbaris

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

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