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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


Healing with simple changes, reduced my pain in less then a month!!

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Healing with simple changes, reduced my pain in less then a month!!

Post  Sparkle on Thu Oct 23, 2014 10:03 pm

Hey all,

I would like to share aome advice with the girls on here. I'm not claiming to have found a cure but I want to share what has been working for me lately. I've found lots of advice on here so only fair I share my own methods. This may not work for everyone but worth a try? I had bad burning and shooting pains that wudnt go away for a year before I made changes.

Note: I have provoked vestibular vulvadynia. Pain in inyercourse, burning and stabbing pains. Pain on touch. I can also get pain if I wear too tight trousers or have presaure for long periods on my vulva. I was diagnosed a month ago but have had this for over a year

What's working for me;

1) vitamins, calcium citrate, magnesium & fish oil
2) vitamin e oil morning and night on yor bits even inside if it helps. Also apply in day if u feel like it.
3) lidocaine 5% ointment every night after a bath ( I rub this into the vestibules,entrance to vagina)
4) I only wash using aqueous creme or emulsifying ointment. No perfumed stuff in bath or shower.
5) wash hair over bath so no shampoo runs into your bits.
6) wash knickers in non bio powder and NO softener.
7)baking soda in bath a few times a week. I don't have it in every bath just a couple a week.
Cool only wear leggings to work, jeans seem to irritate it and cause flare ups.
9) use yes lube on low pain days if u can tollerate sex, also vitamin e oil afterwards or coconut oil to soothe.
9) frozen ice Lollys to eat with 2 table spoons of coconut oils in Apple and mango juice.

So these are my methods and I can honestly say my pain has decreased around 70% to what it has been at its worst.

I know this won't work for everyone but if even this helps one of u then this post has been worth writing.
We all have to keep up the faith and hope that one day each and everyone of us with find a way to manage this condition so it doesn't take over our lives and take away our hope.

Take care girls! Any questions Fire away xxx

Sparkle

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Re: Healing with simple changes, reduced my pain in less then a month!!

Post  Sparkle on Thu Oct 23, 2014 10:04 pm

I don't know why my number 8 has sunglasses lol

Sparkle

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Re: Healing with simple changes, reduced my pain in less then a month!!

Post  meelie on Fri Oct 24, 2014 12:28 am

where do you get your vit e oil? Is it organic? what is your recipe for the lollies? Sounds like you are doing something right. I will have to study up and print your advice. Anything else you remember let us know. Oh, how much magnesium and how much calcium? I am going to try Epsom Salts bath. Dr. Oz says it helps sooth inflammation. Have you ever tried it? Soda didn't seem to help me much.

meelie

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Re: Healing with simple changes, reduced my pain in less then a month!!

Post  Sparkle on Fri Oct 24, 2014 8:42 am

The vitamin E oil i use is called dr.Organic (Bioactive skin care) It called Organic Vitamin E Pure oil complex and it says on back it has rose oil, rosehip oil and jojoba oil in it. Yes its Organic. I get it from Holland and Barretts and its about 10 quid. Are you from the UK? if not im sure you will be able to find something similar where you are.

The lollys i have only used last few days lol but i needed to try and get coconut oil into my gut/stomach/diet as ive heard good things about eating it. This was my way of getting into my diet in a nice tasty way. You need ice lolly trays, some apple and mango juice (or any fruit juice that low oxalate, could even make coconut lemonade lollys! whatever u fancy) and a tub of coconut oil, again get an organic one.
Melt the coconut oil in microwave and mix together with the juice....try and get two table spoons into each lolly. freeze and eat after your dinner or whenever u fancy! try and have one a day.

Another thing i remember that im doing (might be a bit obvious) is only cotton knickers. Wash your underwear separate to clothes using above advice, and also maybe you could try that with a towel as well, and only use that to dry your bits with. What im trying to do is make sure NO perfumed products get down there to stop irritation.

Vitamins im not actually taking as much as recommended on the bottle (purely becos of the size of these pills lol) the bottle for calcium citrate state 1000mg for 4 pills, i only take 2 a day of those. This also have vitamin D3 In it but i think thats in all calcium citrate tabs. im gong to order stronger ones next time so i can take less tabs for a higher dose i will only take between 500 -1000mg.

Magnesium (im taking magnesium malate) same story, massive tabs, the bot says 425mg for 3 tabs, i take 2. Again i will be looking for stronger ones so can take less tabs.

I dont know if this will work for you as everyone is different but i think these are simple changes that could potentially makes a massive difference.
Please let me know how you get on. Im so surprised how quickly all these things are working for me and I hope that for others this could help them too.
My pain today has gone down to a 1, I had mainly pain free sex this morning (hurt a tiny bit first of all and towards end) and i hadnt used lidocaine since evening before and this is the first time it hasnt burned or bled for well over a year.

what are your symptoms? are u genralized or provoked?

Sparkle

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Re: Healing with simple changes, reduced my pain in less then a month!!

Post  Sparkle on Fri Oct 24, 2014 8:44 am

No I haven't tried hose salt baths. I might give them a go too! What are they? Where do u get the salts from?

Sparkle

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Re: Healing with simple changes, reduced my pain in less then a month!!

Post  Sparkle on Wed Nov 05, 2014 5:01 pm

Just another update on using these methods I don't have pain at all some days. I'm able to have sex without pain now and only a slight pain at the start of intercourse. I really feel like I have got my life back and my sex life back. I hope that you all find your solutions and hope that my post has helped some of you. I don't no how long this will last for me but even if it comes back with force in a few months or so, the break has been nice.

I want u all the hold on to hope and never lose faith, this condition can be managed you just have to find what's righr for you.
Keep your heads up girls
X

Sparkle

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Re: Healing with simple changes, reduced my pain in less then a month!!

Post  Qu_789 on Mon May 02, 2016 10:43 pm

Hi Sparkle, thanks for your positive messages, much appreciated. I know it's been a while since your posts, but just wanted to know if your methods continued to work and whether you have stayed pain free?
I've had vulvodynia for over 5 years and vaginismus, so any positive stories are helpful and great to know what is working for other people.

Thanks very much

Qu_789

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Re: Healing with simple changes, reduced my pain in less then a month!!

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