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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


Probiotics - 100% normal at the moment

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Probiotics - 100% normal at the moment

Post  shortstuff on Tue Aug 07, 2012 10:37 am

I posted about this under support and advice but just wanted to write a quick something under treatment success too.

I had been experiencing A LOT of issues down there; basically the constant burning pain diagnosed as vulvodynia started after a yeast infection and a terrible experience with a gyno. That was May 2011. I went back and forth to four different Gynos and was put on a variety of treatments, including hormonal progesterone treatments. The beginning of this year, at my wits end from the constant burning, I stopped taking all hormone treatments including my BC pill. The burning subsided a bit, although I still wasn't feeling normal but I could function. I still couldn't have sex on a normal basis though. After having sex for the first time in like 8-9 months, I had a terrible sore spot, went to the dr. and was diagnosed with genital herpes. Which I've narrowed the culprit down to my cheating ex-fiance (we had already broken up at that point so I just moved on). I assumed the prior pain had been a very long, misdiagnosed outbreak. I started the suppressant therapy and just assumed every pain I had down there was herpes related and became VERY VERY depressed.

Turned out the herpes was not the culprit of all of it, as I then ended up in the hospital with SEVERE (couldn't walk, couldn't breathe) abdominal pain which was diagnosed as PID from a BV infection (all STDs were negative, thank god). So then, of course, I thought, okay, I must have had BV all along and that was the cause of the pain everything will be normal after the antiobiotics. Nope! Finished the antibiotics (2 weeks of them) and got a yeast infection and still had constant burning sensations, although still not excrutiating like when it first started happening.

After taking the medicine for the yeast infection, I decided that I did not want to fall into that cycle of BV, yeast, BV, yeast, so I started looking for ways to ward off these infections. I stumbled upon femdophilus by jarrow on Amazon.com and after reading the reviews decided it was worth a shot. I was not thinking about the Vulvodynia, just the infections.

I started taking 2 pills a day, orally. I felt like the BV might be coming back and decided to insert the contents of the pill directly into my V. The first day afterwards I felt a bit uncomfortable, kinda scratchy, but the day after that my burning sensation was nearly gone. I was amazed!! So I inserted another pill, and two days later the burning sensation was completely gone! COMPLETELY GONE! I am 100% normal at the moment and have been having a normal sex life for the past month!!!! I mean, I had sex three days in a row and STILL NO PROBLEMS. I cried my eyes out the first time I was able to have normal sex; I have never felt that much relief in my life.

I have no idea why this stopped my constant pain, but I feel like for those of us who have suffered for so long and have tried everything, anything is worth a shot! This all started for me after a yeast infection, so maybe it's all related. If anyone else had the V pop up after a yeast infection, I would say it's worth a shot. I'm just so amazed to not feel any pain right now.

shortstuff

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Re: Probiotics - 100% normal at the moment

Post  Kate1981 on Sat Sep 15, 2012 11:50 am

Hiya

I read your post and I have also bought the same jarrow probiotic. I have been taking them for 3 days and I have had some improvement. Im really hoping this will work for me as im at my wits end trying to find a cure. How are you now? Are you also sure you have herpes? I know you can also develop sores with yeast infections so it may have been that. I have been tested for yeast and they say its clear but im not so sure as I know its not always easy to detect. My inital reaction to the burning was heepes but have been blood tested and negative for both strains and have never developed any sores. Were you blood tested for herpes also? I hope you continuing to be pain free I cant wait for that day I know at some point it will happen for us all.

Kate1981

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Femdophilus

Post  Loulou on Sat Sep 15, 2012 6:48 pm

Hi there

Just to update that i've also been trying the femdophilus for the last couple of months. Not sure what effect they've had if i'm honest. Day to day I didn't notice any noticeable difference but having a look at my pain diary it has come down a little since taking them but i'm not sure if this is due to the femdophilus or the gradual improvements i'm experiencing due to the chiro/pilates/yoga regime i'm following.

the reason i'm a bit hesitant is that i ordered them from amazon.uk fully expecting them to come from the uk but i got a delivery note from amazon telling me they'd been dispatched and would take 9-14 days to arrive! Which is when i realised (too late to cancel my order) that they were coming from the US. In the end they took 13 days to reach me, just in a box, NO cool packing or evidence of refrigeration!! and they are very clearly labelled as needing refrigeration. Sooooo I suspect that a lot/most/all? of the bacteria were defunct by the time it reached me.

So if anyone wants to try this and you're in the UK - DONT order them from amazon. I've been looking for a uk supplier but no luck so far. Anyone else in the UK found a UK supplier? Or even a European supplier?

As an alternative i've just bought some BioKult Candea which, amongst other bacteria, has one of the bacteria that is in femdophilus (lactobacillus rhamnosus) Apparently it doesn't need to be refrigerated (i got it from The Nutri Centre). I'm going to start this with my next period as I usually get a flare up after my period so i'll let you know how it goes.

Loulou

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Re: Probiotics - 100% normal at the moment

Post  sarah1983 on Thu Oct 11, 2012 12:35 pm


hi ladies i hope you are feeling better.... i have been recently diagnosed with this curse. i live in australia, and want to try this product. do you suggest i order it from amazon? also is it the same as inner health plus?
my condition started from the urine infection is that the same thing as a yeast infection please help me

sarah1983

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Re: Probiotics - 100% normal at the moment

Post  Kate1981 on Fri Oct 12, 2012 2:41 pm

Hi Sarah

I bought the product from amazon as there is no where else to buy it from in the UK. My v also started with a unrine infection and everytime it flares up i have a urine infection but doctors dont take any notice. The femdophilus have helped me I still have pain everyday but not as severe. Let me know how you go x

Kate1981

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Re: Probiotics - 100% normal at the moment

Post  sarah1983 on Sat Oct 13, 2012 11:29 am



well i bought a similar product here from australia by black mores containing lactobacillus and rhamnosus,.. i was wondering what you think if i insert in in my vagina? or should i just take it orally

sarah1983

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Quick question for Kate 1981

Post  The_Joker on Thu Nov 21, 2013 8:17 pm

Hi Kate,
If you happen to visit this forum again...Just reading through your reply on the forum and saw that you had managed to obtain a blood test for herpes even though you are located in the UK. I tried to get this too, but the doctor at the GUM clinic I spoke to said that it was not obtainable in the Uk...only America...guess that this can't be completely true?

The_Joker

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Re: Probiotics - 100% normal at the moment

Post  mrs.optimistic on Sat May 16, 2015 8:24 am

I have been taking femdopholis once a day for 3 weeks and no difference. I will bump my dose up to twice a day and maybe ask my vulvar specialist about vaginal insertion. Do you still insert it daily after a pain-free month? How are you doing so if you dont mind me asking. Thanks so much!! xo

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Re: Probiotics - 100% normal at the moment

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