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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


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 …

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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


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 …

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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

Can anyone advise me on vitamins to try?

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Can anyone advise me on vitamins to try?

Post  tinkerbelle2 on Fri Mar 21, 2014 8:07 am

I currently take 2x iron (ferrous gluconate 300mg) for low iron levels - I've been a veggie for 5 years. Gave me bad stomach cramps at first but I seem to have adjusted now. I also eat a lot of greens and high fibre foods to counteract the constipation iron can cause! Also take 50mg amitriptline although currently it is not significantly successful although at first it really seemed to be helping. I have heard about magnesium and vitamin D?

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Re: Can anyone advise me on vitamins to try?

Post  Leslieg on Fri Mar 21, 2014 1:30 pm

Hi Tink,
I'm not a nutritionist but after years of internet search....I've read so much. Some V specialist recommend calcium citrate to decrease oxylates in urine that may be causing irritation. They sell them mixed with magnesium which is very helpful for constipation. This might be helpful for you if you eat a lot of foods high in oxylate (ie spinach).....you mentioned you were a vegetarian?
Also, vitamin B is supposed to be good. I buy one that has all the Bs (6,12, etc). Vitamin B is supposed to help with nerve healing if that is potential issue. Unfortunately, the one I just bought from GNC is huge and hard to swallow (the calcium too). I don't know why they make them so huge. Vitamin E and fish oil are supposed to help with skin....strengthen, soften etc.

I know this seems like a lot. I'm trying to get all this with healthy foods too. I've been told that's the best way. I try to take the supplements too ........but I forget sometimes. In my experience......take with food to avoid stomach upset. The vitamin B is my priority lately. I'm learning my pain is more nerve related now. I'm gonna give the B a good few months of consistency and see if it helps.

I hope the ami is helping you. I was just recently prescribed Valium suppositories and topical gabapentin. I actually feel stoned from t he valium. The dose is way too strong for me.....I'm experimenting with cutting the dose. I used a 1/4 last night. A little less stoned.

I haven't received the gabapentin yet. It has to be compounded at the pharmacy. $50 for a months supply......no fun.....we'll see how it works.

Keep us posted on your progress! Spring is coming.....hopefully healing too!!


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Re: Can anyone advise me on vitamins to try?

Post  tinkerbelle2 on Fri Mar 21, 2014 9:08 pm

Leslie, thanks for the reply it was just what I wanted Smile! I'm going to try B6/ b combo, magnesium and calcium! Will keep you posted x

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Re: Can anyone advise me on vitamins to try?

Post  Georgia H on Wed Mar 26, 2014 5:16 pm

Hi Tinkerbelle!

I've gone on a vitamin rampage this week so I thought I'd send it over:

2 x Magnesiums in the morning - for the constipation from ami (on Mary Janes advice – works a treat!)
2 x Waterfall D Mannose – for the UTI’s (this is supposed to be the wonder vitamin for UTI’s these day, I take just in case)
2 x Bio Kult Candea – to prevent against thrush and general gut health (on Mary Jane’s advice!)
2 x calcium citrate – to maintain normal ph of wee
1x b12 (maximum daily dose)

It's a bit of a headache to take them all but I keep them at work and just pop them throughout the day at various times!


Georgia H

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Post  lavrose on Thu Mar 27, 2014 1:46 pm

Namely sachomycis Boulardi from Jarrow, and femdophilus from jarrwo. Also, Kyolic, folic acid and vitamin e help a lot. coconut oil is also good, and if your having an IC flare, Coconut water..

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Re: Can anyone advise me on vitamins to try?

Post  Loulou on Fri Mar 28, 2014 9:41 pm

Hi Tinkerbelle

I take Magnesium OK which is a multi-vit designed for women and the monthly cycle. I researched it at the time cos I thought vitamin deficiencies (zinc, magnesium, B's) might play a role in my vvd and it seemed to have most of the things I felt I was missing. I also started taking vit D drops and Bio-Kult Candea probiotics. Diet is best way to get your vits and minerals but i'm no angel so I need help! Even if a vit/mineral deficiency isn't a direct cause, I'm a strong believer in taking an holistic approach and looking after every aspect of your health can only help.


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Re: Can anyone advise me on vitamins to try?

Post  Alana3 on Fri Mar 28, 2014 9:59 pm

I found that I was going crazy stalking up on vitamins and all that was happening was me spending money I stopped taking everything and listened to my docs and right now my v is gone cuz of the surgery. My endo and adeno don't flare up as much and im happy. Just be smart with what your diet is


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Re: Can anyone advise me on vitamins to try?

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