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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

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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