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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


    Going Insane!

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    Going Insane!

    Post  Alana3 on Wed Oct 10, 2012 7:31 pm

    So today I find out I have a strep infection which I have been previously treated for but apparently not "correctly" whatever the hell that means. It is a pain in my ass because it makes the vv hurt even fucking worse. I'm stressed out!

    The past year I have taken about 50 prescriptions because my previous 3 gynos were morons who had no idea what they were doing. I supposedly had a UTI, ureaplasma, IC, Endo, BV, yeast infection, strep, and a kidney infection, all which I didn't have BUT WAS TREATED FOR because they COULDN't FIGURE OUT how to treat me. Well how about sending me to someone who does? DUH!

    I hope they can cure this stupid strep infection, of course I find out I have it a day before my vacation where I get to see a guy (of course I can't have sex because that hurts too goddamn much). UGH!!!! So anyone if you know of strep b infections can they be cured? And if you can tell me everything will be OK I'd like to hear about that too! I just want to have sex and have my vagina stop hurting. Yes, I realize you're there you've made it quite clear, now start acting like everyone else's and let me have sex and stop burning!

    Alana3

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    Hello

    Post  lavrose on Thu Oct 11, 2012 9:16 am

    Please read my previous posts. YES!!! I have strep B infection aswell, I got diagnosed 7 years ago, when I got pregnant with my daughter.
    There is no cure, and I often think this was maybe apart of why I had so many problems.
    I also got diagnosed with Ureaplasma, which can also cause problems, but I cured it with antibiotics.

    For me, antibiotics were the key to curingmy vaginal and bladder issues.

    My vag is awesome now, my bladder issues remain (but are alot better) thanks to antibiotics. and Ive been continueously on antibiotics, for the last six months, and Ive been on every damn one you can think of.

    I mite have cured my strep B for now, who knows. I had a yeast infection that wouldnt go away when I conceived my daughter and during the pregnancy.

    My doctor looked at me like I was crazy, when I explained to her that sex hurt while I was pregnant. She also misdiagnosed a severe bladder infection I had when I was pregnant aswell, and I had a severe bladder infection the entire time I was pregnant and did not know (cuz I never had one before) she just told me my daughter was sitting on my bladder, and thats why I was in pain, and couldnt sleep thru the night.
    I strained, and strained for hours on the toilet while heavily pregnant, and since then, my bladder has never been the same ever. Im the 8th month, they finally caught the bladder infection, cuz I couldnt function anymore.

    Doctors are idiots.

    Its up to us. To find the answer. Never listen to your doctor.

    They just dont give a damn.
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    ABX

    Post  lavrose on Thu Oct 11, 2012 9:18 am

    Azithromycin, and Doxicyline, for atleast a month or more, maybe two or three for the vag issues.

    Bactrim for the bladder issues. Or macrobid.

    Atleast 2 rounds of each.

    Im still having problems, so I will keep you all posted..
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    Re: Going Insane!

    Post  Alana3 on Thu Oct 11, 2012 1:34 pm

    Seriously? No cure? I'm going to go insane, they put me on crazy antibiotics and it better go away. Does it go away? How did you even get pregnant I cant even have sex! So is it a big deal or just a pain in the ass? I hate this!!! The topical they put me on to fight the burning stinging worked tho! But I mean I cant stay on that for forever. Seriously what do you do to get rid of it? I don't really have many bladder problems except for the occassional UTI. As soon as I started taking my compound for VV the urge to pee diminished a lot. Thank god!

    I have a huge heavy strength antibiotic for the strep. They said it should go away after this, 850 mg twice a day that bitch better go away. Sorry for the language I'm just so frustrated. How do you even get it and can it be transferred? (I have a boy I'm visiting this weekend).

    And omg if a doctor told me it was because my daughter was sitting on my bladder I'd deck her, we obviously know the difference between a UTI and kids ugh! Thanks, I never want to get pregnant but with waht you're describing I don't want to EVER get pregnant lol EVER. I really just want a sex change and become a man, it seems easier. I'm being sarcastic but still OMG! AHHH!!!!!! Evil or Very Mad I'M PISSED OFF! I hate this medical hell its terrible. I sympathize with all of you! Sad

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    Re: Going Insane!

    Post  Alana3 on Thu Oct 11, 2012 1:35 pm

    I had ureaplasma too ugh

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    Re: Going Insane!

    Post  Ceriane on Fri Oct 26, 2012 12:50 pm

    That is so strange how many of us are strep B carriers. I was told that I was but that it's symptomless, the only thing they told me about it was that when I have a baby I need to let the midwife know as I'll have to go on intravenous antibiotics....but maybe that is why we have vulvodynia, because of strep B?

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    Re: Going Insane!

    Post  Alana3 on Mon Nov 05, 2012 6:29 pm

    I never saw this until now. It could be true, but so many other people have this without strep B. So god only know I am so frustrated with this stupid disease. I HATE IT!

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    Re: Going Insane!

    Post  Ceriane on Tue Nov 06, 2012 8:03 pm

    Do you think it's to do with strep B though.

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    Re: Going Insane!

    Post  Alana3 on Tue Nov 06, 2012 10:16 pm

    Maybe, but my strep was treated with the anti's and went away. So I don't know...

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    Re: Going Insane!

    Post  Ceriane on Wed Nov 07, 2012 2:06 pm

    I've been told I'm a strep B carrier, and that when I have a baby I'll need to inform the midwife as I'll need intravenous antibiotics....

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    Re: Going Insane!

    Post  Alana3 on Wed Nov 07, 2012 8:47 pm

    Yeah, that sounds about right. It's a normal bacterium that just goes absolutely ape shit in us for some reason.

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    Re: Going Insane!

    Post  Ceriane on Thu Nov 08, 2012 6:55 pm

    It's not fair. I just want rid of it.

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    Re: Going Insane!

    Post  Alana3 on Tue Nov 13, 2012 9:20 pm

    Mines gone, have you taken antis for it? I was on hardcore antis and I feel better Smile

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    Re: Going Insane!

    Post  Ceriane on Wed Nov 14, 2012 7:37 pm

    What's that?

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    Re: Going Insane!

    Post  Alana3 on Wed Nov 14, 2012 9:02 pm

    sorry antibiotics lol have you tried anything?

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    Mystery illness

    Post  lavrose on Thu Nov 15, 2012 5:22 pm

    Right now, I feel cured. I ended up taking a super high dose of bactrim DS(third round) 4 pills a day, 2 every 12 hours for five days.
    Thats the bladder. I feel really great. Like I think I mite be cured. Im just hoping to God, it doesnt come back.

    The flowers. So, I never feel quite right down there, but in the last few weeks or so, Ive tried out a few new essential oils, and instead of the suppositories, which are messy and stronger, Ive been just putting a few drops on my fingers and kind of inserting and rubbing around inside, morning and evening, (after shower, etc). Ive been trying different oils , like Patchouli, ylang ylang, eucalyptus, and juniper berry essential oils, all from Aura Cacia, as it seems, your body can become very used to the same old things all the time, and quite kinda working. Tea tree is very old news at this point in time right now. My body is so used to it, I dont think Ill ever use it again. Geranium, and rosemary, lavender aswell, as grapefruit seed extract. OMG, my vag is burning just thinkin about this, its been Hell.

    ever since I stopped the antibiotics, finally, (been on continuesly for about 6 months) I feel awesome. It feels AOK down there. SEx is normal, and every other day. Not painful. No after yeast burning issues...I feel like I mite get back what this disease has stolen from me,a nd I mite be engaged(fingers crossed) having a normal sex life helps...

    Strep B, YES, It was kinda awful, cuz while I was in Labor, I needed a continueous IV of antibiotics, and for the first hour, it burned my veins, so I was highly uncomfortable, and in labor the first few hours of the IV. Not fun. and there is no cure for that either. So if I get pregnant again, will have to do that again. What fun!!

    Ureaplasma:: Cured that. That turned out not to be the issue with my bladder, but my Vag seemed to turn a page as to feeling alot better.

    My theories on my bladder problems:: I think many women are suffering from some kind of superbug bladder infectin that lives in the walls of the bladder and doesnt culture out. Also, it seems to stay in the bladder and not migrate to the kidneys, cuz these women live with this for YEARS and YEARS, and it ruins there lives. Its def an infection tho. Everytime I got on a new antibiotic, I felt better, and better and better, until finally, Bactrim knocked my strain out, but it took more than a few normal standard rounds of it, and doctors are most fearful about giving long, strong, high doses of antibiotics. They think youll explode or the world will end or something. I almost wonder if this disease is some kind of money making conspiracy, but i was determined from the beginning, KNOWING this was an infection. and not "bladder damage"

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    oil..

    Post  lavrose on Thu Nov 15, 2012 5:27 pm

    Just remember, if your gonna try oils, just be careful, it will burn in the beginning, mite want to dilute. It will always burn a bit, for the first hour, than it will feel awesome, and pain, burning free, its a miracle. Research Younglivingessentialoils. They are a wonderful company with high quality oils, but expensive. They also have healing testimonials, from real people talkning about how they healed themselves with essential oils, I knew nothing about essential oils, until this disease, so thats one good thing I got out of it. And my health has never been better, and I will never take my health for granted again, ever.
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    Re: Going Insane!

    Post  Ceriane on Thu Nov 15, 2012 6:04 pm

    Yeh, I tried metronidazole and doxycycline and they really helped with the worst of the pain, which is making me wonder if all this was originally triggered by an infection.

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    Re: Going Insane!

    Post  Alana3 on Wed Nov 21, 2012 3:39 am

    Aren't those prescriptions and not oils?

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    Re: Going Insane!

    Post  Ceriane on Wed Nov 21, 2012 1:02 pm

    Hi Alana...I think I've replied to the wrong thread somehow...I was replying to when you asked if I'd tried antibiotics....

    I've started using coconut oil however, and after hearing other people's recovery stories am beginning to feel optimistic that one day I could be vulvodynia free (as I'd almost resigned myself to having to live with it).

    I don't however have the bladder issues....I did at one stage, for almost a year, but am cured of that now.

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    Re: Going Insane!

    Post  Alana3 on Wed Nov 21, 2012 2:12 pm

    No you were just because the person before you was talking about oils never mind lol

    Do you eat the coconut or put it on your hooha? haha Yeah I had bladder issues too but they went away. It was interesting, someone had mentioned they had a problem with Mr. Bubbles and I did too, I wonder if there were a link between that and if other people had used Mr. Bubbles. I had to see a kid gyno when I was about 3 because of blood in my underwear and the leading cause was Bubbles. Jack ass. But when I went there, they really hurt me I can remember it now and now have a huge phobia of anything coming near my hooha. But at one point sex did feel good and I wasn't worried then. I blame that jackass gyno from when I was 3. ger.

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    Re: Going Insane!

    Post  Ceriane on Thu Nov 22, 2012 5:43 pm

    I swallow the coconut oil....I did try putting it down there, but to be honest, I try to avoid putting anything down there directly, because before I realised I had vulvodynia, I used to constantly think it was a yeast infection I couldn't get rid of....and I used to constantly use canesten pessaries, which would really aggravate the vulvodynia and make it 1000000x worse, and I didn't realise at the time and just kept doing it. I'll never try that again....the pain has been 10000x better since I stopped using them.

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    Re: Going Insane!

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