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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


    here's hoping!

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    here's hoping!

    Post  Alana3 on Wed Jul 30, 2014 1:53 pm

    So I got my vestibulectomy on December 5, 2012.  Everything has been perfect.  Except my periods were incredibly painful and awful (Bleeding every 2 weeks!) after that surgery.  We assumed it was the birth control, which also made me manic and depressed.  So I switched to Yaz.  I also had a diagnosis of endometriosis.  My periods were SO heavy and I got EVERY symptom.  I became very depressed and suicidal.  I could hardly make it out of bed.  So my doc put me on Yaz continuous mode so I wouldn't have a period.  This didn't work as planned.  I bled everyday, I felt like crap, my boobs hurt, I was depressed.  Finally, got off that and went on Zenchent.  Same thing, so doc told me to take two a day.  My boobs went from a C to a DD (OMG IT HURT LIKE HELL!), I would cry at everything, nausea, blah blah.  I woke up one morning COVERED in blood and passing clots.  The only positive is I didn't get pregnant, which would be hard anyway, because my bf is sterile! haha  Hydrodcodone didn't touch that pain.  So I set up a surgery date.  Then the hospital set it up wrong.  So finally went in to my doc begged him to get me off BCPS.  my period lasted about a week and went away and DIDNT come back for another MONTH (HOLY SHITTTT!!!!!)!!!!! haha it was the easiest period I have had in quite some time.  More annoying than anything.  So I decided to stay off even though my doc has told me an IUD would help.  No thanks doc.  I hate being depressed, I hate my boobs hurting, the acne, the weight gain, the constant bleeding that left me anemic, yuck.  BUT more importantly I HAVENT HAD A YEAST INFECTION IN OVER 2 MONTHS!!!!!! Why am I sharing this with you guys?  I know a lot of women on here have frequent yeast/uti/bv.  I was calling my doc every 10 days for a Diflucan prescription because of frequent yeast.  I haven't had a problem in 2 months!  Now I am not saying throw away your pills.  Some of us need them and I understand that.  But it might be worth looking into.  Since every single one of us (for the most part) started with yeast, bv, uti... I'm wondering if the pill could have been the culprit?  I am going to continue off the pill and see if it helps.  Thank GOD the bf's doc said we had about a one in a million chance of getting prego (since I don't want kids this is perfect for me!) and if I wanted to get prego my only chance using his sperm was with IVF.  I told him hell no! But seriously, I only get itching now after sex and its only for about 20 minutes (I think its the friction that causes the itchy sensation).  So I am hoping that I will become a normal patient and only have to visit my doc once a year.  What do you guys think about any of this??

    Alana3

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    Re: here's hoping!

    Post  Caropes on Wed Jul 30, 2014 2:04 pm

    Thanks for your story. I have been reading a lot about this and am contemplating going off BC. I am only on it to alleviate symptoms of peri-menopause anyway. And since my V.V. Is so bad, I am not having sex with my hubby so no chance of getting pregnant!

    Caropes

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    Re: here's hoping!

    Post  Alana3 on Wed Jul 30, 2014 3:07 pm

    No problem!  There are non-hormonal options (condoms, spermicide, etc) NO MORE hormones for me!!! haha

    what are you doing for you v now?  I remember reading stuff, but honestly was in such a horrendous mood I just don't remember what you said Sad sorry! You can try it, cant hurt, and if it doesn't work for you, you can always go back on!

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    Re: here's hoping!

    Post  Caropes on Wed Jul 30, 2014 7:05 pm

    I am currently on Gabapentin 1800 mg/day and Amitriptyline 50mg/day. I am also trying to follow the low-oxalate diet. The meds have helped a bit but my pain level is still consistent at 4-5. I would give anything (short of giving up son) to not have this horrible condition!!!

    Caropes

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    Re: here's hoping!

    Post  Alana3 on Wed Jul 30, 2014 7:19 pm

    Is it all the time?

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    Re: here's hoping!

    Post  Caropes on Wed Jul 30, 2014 7:46 pm

    Unfortunately, yes. It is chronic, unprovoked v.v. Started about 4 months ago after I was treated back to back for B.V. with Metrogel.

    Caropes

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    Re: here's hoping!

    Post  Alana3 on Thu Jul 31, 2014 1:01 am

    Thats awful im so sorry. Try a baking powder bath it worked for me... maybe you'll find some relief?

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    Re: here's hoping!

    Post  zarli on Thu Jul 31, 2014 6:02 am

    Oh Cathy I am so sorry to hear your still in pain. It is horrendous I know. I am here for you to talk to any time xx

    zarli

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    Re: here's hoping!

    Post  zarli on Thu Jul 31, 2014 6:04 am

    Alana so happy for you and fingers crossed you stay well.xx

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    Re: here's hoping!

    Post  Alana3 on Thu Jul 31, 2014 12:57 pm

    Thank you, Zarli.  How have you been?

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    Re: here's hoping!

    Post  zarli on Fri Aug 01, 2014 5:42 am

    I have been struggling with a flare due to a new job, but I think I am improving now. Today I just feel sick of it. You know those days when you just think f___ it I've had enough? But anyway I just love reading stories of you girls on here that have positive times its great. And god knows you have been going through this for years haven't you ? Glad for you xx

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    Re: here's hoping!

    Post  sailor_moon on Sat Aug 02, 2014 12:15 pm

    I totally agree with you about birth control/ the pill. After doing my research about what it actually does to your body I never want to go on it ever again!

    I am unfortunate enough to have an unruptured brain aneurysm so I've been told strictly to stay off the pill for as long as I live, so at least the doctors can't try and force me to take it as it can endanger my life with the risk of blood clots associated with the pill.

    It makes me wonder, so so many young women (like me) get put on the pill at a young age to control periods and other hormonal problems. The pill only masks these problems, so as we get older and want to come off it to start a family ect, the problems we had when were younger often come back in full force. Doctors should be trying to find the cause of someones problem rather than lie and tell young women "the pill will FIX the problem, because it doesn't! ".

    I get that in some cases the pill and other BC hormones are the only option. For example if someone is estrogen deficient and needs to take estrogen to fix the problem.

    I really wish that back in the day mum and I had done more research rather than just listen to the doctors who said putting me on the pill at 17 would fix everything. Every single time I have come off it, things have gone horribly wrong.

    Alana I wish you all the very best and pray that you are finally on the mend, permanently! X
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    Re: here's hoping!

    Post  Alana3 on Mon Aug 04, 2014 1:16 pm

    And today I wake up with a burning vag and a UTI (at least we know the burn is from the urine! haha) antibiotics here I come- but still I'd rather this then other things, but man I gotta peeeeee lol

    And Zarli, been dealing with something woman disease related since I was 14.  I'm 28 now :/ YUCK!!!!!

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    Re: here's hoping!

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