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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 …

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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 …

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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.

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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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Distraught, i need someone please

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Distraught, i need someone please

Post  quell183 on Wed Sep 25, 2013 3:31 am

I am very new to this. I am almost 21 years old and have been dealing with this pain for about 5 months. Ive seen various doctors. About 5 gynecologists and have been treated for bv, cervicitis, yeast infections, ive gotten a steroid cream but nothing has worked. I noticed this pain back in may when i had a pap smear and realized that it hurt more than it had the first time i had a pelvic exam. About a week later i had sex for the first time in 10 months and felt a sharp pain and had to stop. Ever since that day ive never felt the same. Prior to all of this i felt completley fine, no burning or pain or anything. The gynecologist had mentioned they saw a little cut also. I havent been officially diagnosed but i know this is what i have. Im distraught and feel that there is no hope for me. Im too young to be going through so much emotional and physical pain. I dont have insurance so its even harder for me and i feel like nobody understands. I just want to feel better and go back to feeling normal. Crying or Very sad Sometimes i just want to die.

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Re: Distraught, i need someone please

Post  zarli on Wed Sep 25, 2013 8:55 am

Hi, are you taking any medication at present? Please know there is help available and you are doing the right thing reading and researching on here. Every one is so different and different things work for different women. I felt just as you are explaining how you feel when I found out I had this problem but I got help and things improved immensely. Very Happy 

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Thank You for answering

Post  quell183 on Wed Sep 25, 2013 5:54 pm

No i am not, im am applying for medi-cal and then have to make an apointment at a regional hospital so they can see me and who knows how long that will take. I really am afraid that nothing is going to work. I read so many womens posts and saw that most things have failed Sad 

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Re: Distraught, i need someone please

Post  Elc88 on Wed Sep 25, 2013 9:55 pm

Hi quell! You're a little older than I was when my pain first showed up - I was 20, and definitely felt I was too young to be going through all this restriction to my life! But it hasn't ruined my life, and I've been able to go on and achieve everything I would have if I hadn't had the condition.

You're doing the right thing by being proactive in finding a cure. I am fortunate to be on the NHS, but even then it was over a year before I even saw a gynaecologist, so the fact you have already been seen is promising, and I hope it means you can find a cure sooner! Good luck!

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Elc88

Post  quell183 on Thu Sep 26, 2013 5:17 am

Thank you elc. I appreciate the support, all i really have is you guys on this forum to help me because nobody else can.

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Re: Distraught, i need someone please

Post  Sarah001 on Thu Sep 26, 2013 4:27 pm

Hi quell what I would suggest while you're waiting for your appointments is buying a copy of both When Sex Hurts and Heal Pelvic Pain. Both are available from Amazon and very inexpensive and the first talks about all known causes of V and will help you look in the right direction treatment wise and also give you plenty of knowledge for appointments and the the second is about the musculoskeletal causes of V and will help you to learn which muscles to look at for trigger points and tightness which could also be something to get on with while you wait. I was an idiot and waited 6 months to see a vulvar specialist while doing very little other than try a few creams meanwhile my pain went from a localized pain to generalised so I would always say get those books and start working through them to give yourself the best chance.
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Sarah001

Post  quell183 on Fri Sep 27, 2013 1:33 am

How am i supposed to find a vulvar specialist? I dont know how long it will be until i am seen again. and i already feel that its gotten worse than from when i started.

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Re: Distraught, i need someone please

Post  Sarah001 on Fri Sep 27, 2013 1:29 pm

I'm guessing from the time of your posts you're not in the UK so I can't advise how to find a specialist elsewhere I'm afraid, I only know how to find people in the UK. In answer to another question on a different thread physio is the UK's version of a Physical Therapist. If you let everyone know where you're from someone else might be able to advise how to find a specialist.
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Re: Distraught, i need someone please

Post  tinkerbelle2 on Mon Sep 30, 2013 10:18 am

Hi quel! I'm also 21 but mine started before I'd had sex, when I was 17 (sorry, I don't want to scare you! ).

It could be that having something new in your vagina disrupted it and it's now extra sensitive. It's so strange though because in a way that's what we are born for, surely our bodies have evolved to go back to normal after sex? I hope they evolve to get rid of this damn pain!
Doctors seem to know so little about triggers and causes. I'm still awaiting my next appointment so can't really recommend anything to you that has really worked for me yet, but good luck and I'll keep you posted.

Explore all options that are available to you, different things work for different people.
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Re: Distraught, i need someone please

Post  quell183 on Tue Oct 01, 2013 7:00 am

I know, its crazy how it can happen out of the blue too. It's very unfortunate that doctors dont really seem to remember that this is a condition and instead just basically tell you they dont know what is wrong. I think ive been doing better, mentally at least, ive stopped thinking about it as much. I hope your doc appointments go well and keep us updated on what happens.

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Re: Distraught, i need someone please

Post  EviE°Bee on Wed Oct 02, 2013 4:09 pm

Where are you from quell?

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Re: Distraught, i need someone please

Post  quell183 on Wed Oct 02, 2013 8:06 pm

Im in Southern California.

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Re: Distraught, i need someone please

Post  Leslieg on Thu Oct 03, 2013 12:42 am

Hi Quell, I don't live in California but I'm sure if you do an Internet search for vulvar specialist in California something will come up. Maybe in LA? If you find something read reviews if any and call them, call more than one if you need to. The national vulvodynia association may also be able to help you find a physician that specializes in this in your area. i live in NH so I can't offer specific help. I see a specialist in Boston. Keep searching, you will find something. In the meantime, buy all cotton underwear, try to buy cotton sanitary products. Don't use Always....they are know to use chemicals that cause irritation. Rinse with water after urinating......some woman carry a small bottle of water in their purse. I actually did this for a time. Wash without or with very little soap for sensitive skin. Your vagina is actually self cleaning. Pay attention to what you do and what you eat to see if there is any correlation to your pain. Go without undies when you're home. Don't wear undies to bed. These are the basics most if us do. I don't know what doctors will recommend. Some women also use a thin layer of vasoline to create a barrier and lesson friction to sensitive tissues. Hang in there, love. You will find the answers. Do these things and you may find some relief while you wait for appointment. Be Well and stay positive. Sorry for typos, I'm typing on phone.

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Re: Distraught, i need someone please

Post  quell183 on Thu Oct 03, 2013 3:53 am

Thank you. I do try and do those things, except im not sure which pads to get? I havent gotten my period this month yet, but previous months i used always infinity and i seemed to be okay? I'm not sure what foods to avoid because the burning hot feeling is worse some days and better other days?

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Re: Distraught, i need someone please

Post  tinkerbelle2 on Wed Oct 09, 2013 5:34 pm

Hey quell how have you been feeling ? xx
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Re: Distraught, i need someone please

Post  quell183 on Thu Oct 10, 2013 6:55 am

Hello everyone, i have not been able to go to the doctor yet. I have been feeling the same, maybe a little bit better. I guess my symptoms vary from day to day. Sometimes it burns and other days it feels normal, or ill be fine all day and out of nowhere i feel the burning on my left side. Regardless, i still have that feeling that there is something there. Ive been using aveeno sensitive wash and it doesnt irritate me. I also used tampons and they dont really bother me, but i feel on that side a little more pressure. Im not sure, what to think about my situation.

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Re: Distraught, i need someone please

Post  EviE°Bee on Sat Oct 12, 2013 9:19 pm

You should try desitin for babies. It was recommended from a Doc because I felt dry.I was hesitant to try it because im sensitive to everything but it feels good when I apply it. Just make sure to get the original, not the sented lavender.

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Re: Distraught, i need someone please

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