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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 …

Comments: 10

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 …

Comments: 6


I know this long but please help if you can. :D

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I know this long but please help if you can. :D

Post  dani1990 on Wed Aug 31, 2016 3:39 am

My name is Danie'l, I live in Portland Oregon and I need advise.
Let me just start by saying thank you for being able to share your stories. They are filled with so much emotion,stregth and courge. This is my story. I have been sexually active all my life ( I'm 26) I have never ever had pain or any sort issue with my vagina prior to around July 20th of this year. I come here in hopes someone can give me so advice or knowledge with my story.

A little over a month ago I went to the doctor because I thought I had a UTI ( I didn't have much pain or buring of the vagina/vulva at this time). Well my doctor told me that my urine sample came back negative. I was shocked honestly I thought for sure I did. Anyway she thought since I hadn't had a pap in 3 years it was time and she would look for yeast while she was down there. She said that sometimes the side effect of yeast and a uti can feel the same. She said that I had BV she then prescribed me Metroidazole Orally and sent me on my way. The medicine made me very sick I couldn't keep anything down or work because of this so I called the doctor back and she told me to take it vaginal form so the side effects weren't so bad she also prescribed me BACTRIM incase I did have a uti. The Vaginal METROIDAZOLE made my symtoms worse and the doctor told me to come back in because the symtoms I was having didn't seem like BV. She told me to see a different doctor as she didn't have another appointment available for a few weeks. The doctor I saw that time was the worst. She told me I had , had rough sex and the friction hurt me. I told her I was scared at this point and I really didn't think so. She then was very rude and proceded to tell me that women are in pain for a long time after givng birth and she was sorry but that there was other patients waiting and she wasn't my primary so theres nothing she could do but proscribe numbing gel. I was baffled and emotional torn down by this women. To me she made it seem like I was crazy and because I don't have children I don't know what pain down there really is.

I then went home and tried the numbing gel along with witch hazel which she said would be good. No relief. I contiened to use the VAGINAL METROIDAZOLE even though it made things worse hoping it would be over by the time I fished it. 2 days later I was in so much pain I went to the ER they did blood work, urine sample, even a vaginal ulta sound. still nothing they proscribed me a medication for yeast because at this point they thought the reason it burned when I peed was because of yeast in my urethra. They told me it was safe to use this and the vaginal antibiotic at the same time. So I did this for 2 more days.

I then got news from my doctor who said my Pap came back abnormal and I was positive for HIGH RISK HPV. I was emotional crushed and scared. They said that the HPV however could not be whats cause my symtoms since mine is cervical and minimal at this point. I don't have any visable warts or liosions on labia or vulva/ vagina area.

The pain had lessened a but at this point but started up again so I went to GYNO. They told me the same that everything looked normal and that sometimes things just get irritated down there and that there was nothing they could do. They also said that HPV wouldn't cause this type of pain especially with no warts. She said she wanted me to take a pill for yeast just in case.

I was terrified at this point because I felt like no doctor would listen or help me. My insurance ran out on my birthday which was July 24th of this year. Not having insurance or a job now I didn't know what to do.

So I went to planned parent hood. There the doctor told me that everything looked normal did a wet mount and said I had bv again. I was happy at this point because she said that the pain I was having could be related to BV and that I had a pretty bad case of it. She gave me the oral Metroidazole again and told me to fight thew the side effect for a week and I would be back to normal in no time.

So I did this I was sick couldn't keep anthing down. My body felt tired and awful. I did start to get some relief with bloating and the painful urination.

So now its a week later my vagina is still buring my symtoms come and go I went to the doc today they did another wet mount and said everything came back normal. My doctor told me she thinks I might have Vulvadynia and it would be something I would probably have to live with... She also told me to get tested for Diabeties because I have excessive thirst water seems to go right threw me. I felt awful ever since I've gotten off the antibotics my stomach burns and I can't sleep because if the pain. Not to mention the STRESS.

That's what led me here I thank anyone who was willing to take there time to read this I know it was long but I didn't want to leave anything out. I guess I was just wondering what my next step should be does it sound like Vulvadynia to you? Will I ever be able to live like I once did, will my symtoms improve over time?

Really thank you for listening you don't know how much means to me. I feel so lost and alone. My boyfriend is very supportive but he's struggling watching me like this. I told him he didn't have to stay but he's determinded I'll get better.

I changed my diet Monday and started taking some different vitamins and well as a probiotic. This kinda seems to be helping but the pain just feels muffled. Any help would be great thanks for reading <3

dani1990

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Join date : 2016-08-31
Age : 27
Location : Portland Oregon

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Re: I know this long but please help if you can. :D

Post  jjr23 on Wed Aug 31, 2016 8:05 am

Hi Danie'l, sorry to hear that you've been through all this in such a short time. Seeing doctors who don't know what's going on is so frustrating - we have all been in that situation and know what it feels like!

My best advice would be to see a doctor/gynocologist who specializes in vulva pain. It's possible that you have vulvodynia but only a good doctor will be able to diagnose you. The sooner you find out if you have vulvodynia or not, the sooner you can start treatment and work towards eliminating the pain.

Don't give up. There are doctors out there who can help! Sometimes it just takes a while to find the right one xx

jjr23

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thank you for the reply!

Post  dani1990 on Thu Sep 01, 2016 5:05 am

I was excited to see when someone had responded I could really use some friends that have gone / are going threw this. As I'm kind of new to it all. At this point my symptoms change a lot so its hard for me to even figure out where to start with doctors espically since the last month has been a nightmare of doctor visits. A lot of my symptoms revolve around urination and I'm not sure if that's normal or something other woman experience or something else that has nothing to do with it. I feel a stong pain in my urethra when I have to pee and it doesn't calm down until around 20 mins or so after I pee which suck because I've also had frequent urination as one of my symtoms. I don't know if this can be related or its something else all my urine cultures have come back negative... I also have pain that goes from the top of my vulva but more so by the outside of my vagina and even sometimes my anus which I find weird. I unfortually lost my insurance recently because of all this. It has really taken an emotional tole on my life in every way as I'm sure you know, I applied for state insurance but I'm worried I won't be able to find a good knowledgeable doctor with insurance like that. Thank you for listening any advice is appreciated I've been so hopeless and sad lately its just nice to have someone to talk to <3

dani1990

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Re: I know this long but please help if you can. :D

Post  emalita on Thu Sep 01, 2016 2:53 pm

Is the pain with urination actually within your urethra/bladder, or is the urine causing burning/stinging/rawness at your inner labia? I had struggled a long time with urine causing a lot of discomfort to my inner labia skin.

Speaking as someone whose pain started from being over prescribed antibiotics and antifungals, my best advice is to do NOTHING for several months. I know that sounds horrifying, but I promise you that throwing more and more antibiotics and creams at the problem is only going to make things worse. Your vagina and vulva need a chance to regulate themselves without the constant irritation of creams and pills upsetting the delicate flora balance. Giving it time may not cure your pain 100%, but it will give you a chance to find your baseline.

Also, it looks like you're in the U.S., so insurance through the Extension (state insurance) will provide you with options to a wide range of doctors. Plus, you can receive a penalty now for not being insured (http://obamacarefacts.com/obamacare-individual-mandate/). So you should really sign up for insurance Smile

emalita

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I hope I can tell you this but it may help you and it's natural.

Post  Sophia15 on Thu Sep 01, 2016 9:37 pm

Hello. One time I went to a doctor who told me when the burning is really bad to use Crisco down there. Lol. He was the best. He has retired. Dr. William ledger. He has done a lot of research on our topics. I didn't feel right about using crisco. So, I started using organic Virgin coconut oil. The solid. It seems to take the edge off for me. And some of my other friends that are going through the same condition as all of us. Others may say it clogs there pours. But read up on it first and call your doctor. My specialist actually recommends it to his patients now and compounded a medication for me with coconut oil as the primary substance in it. I hope that helps. Also. Ice ice ice. For 15 minutes. Put ice in a clean cotton pillow case. Make sure pillow case is not washed In perfumed detergent and put it right on your private area. No longer than 10-15 minutes. Keep checking it to see how you respond to the ice. Everyone is different. You don't want to get frost bite down there. Also cotton underwear. No jeans. No perfumed soaps. Wash clothes in free of perfume and dyes. Try not to sit a lot. Air out at night. lol. Read the sites on vulvodynia. It will explain everything to you. Stay away from the quack doctors. Be careful of them. I spent a ton of money out of pocket on ones telling me I had a vitamin D deficiency causing this. Be an advocate for your own body. But most of all GO WITH YOUR GUT. If something doesn't feel right to you. It probably isn't. I learned the hard way. I hope that helps a little. Sophie.

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Re: I know this long but please help if you can. :D

Post  emalita on Thu Sep 01, 2016 11:32 pm

My dermatologist recommended hempseed oil since it shouldn't clog pores and because there is a much smaller chance that you will have a reaction to it. So that's another oil to consider.

emalita

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Re: I know this long but please help if you can. :D

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