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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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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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