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    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: 1

    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: 8

    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

    I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

    Mon Mar 12, 2018 4:33 pm by totallycured

    Hi,

    Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

    Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

    Comments: 4

    Condoms Less Painful?

    Mon May 07, 2018 3:35 am by stillinpain

    I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

    Comments: 0

    Will there be an end?

    Fri Apr 27, 2018 12:06 am by Krista2828

    I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

    I am in my 20's.. it shouldn't be this way.

    Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

    Comments: 6

    you can be healed so easy and quite fast.

    Thu Apr 26, 2018 11:46 pm by pussycat

    Hello everyone,
    i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

    Comments: 4

    Hi Im from Australia :)

    Sat Jan 08, 2011 1:08 am by emma

    Hi girls... I live in Australia.
    I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
    Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

    Comments: 35


    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!

    Alana3

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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

    zarli

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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

    zarli

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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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