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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, …

Comments: 7

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 …

Comments: 5

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 …

Comments: 4

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


20 years old with vulvar vestibulitis

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20 years old with vulvar vestibulitis

Post  mrs.optimistic on Thu May 14, 2015 6:29 pm

My name is Jess- this is my story.
I met the love of my life in highschool, sex was amazing and we never had a single problem. At just 17, I fell pregnant with twins. During my third trimester, i had a yeast infection and treated it (or tried to anyway) with monostate one. It was so strong that it felt as if I was being burned by acid from the inside out. I jumped in the shower and tried my hardest to get the medication out, with no success. I laid in bed in agony that night and cried myself to sleep. Since that day things haven't been the same. I had a c-section and waited 6 weeks before having sex with my husband. All I experienced was pain, but didn't think too much of it. I was put on depo and literally bled for 3 months straight, so I changed contraceptives. I had back-to-back yeast/bacterial infections and UTI bladder infections during this time. I was treated with constant antibiotics with no relief. After two years, my doctor told me i was experiencing swelling and discomfort because my birth control was causing an hormonal imbalance. So, I stopped taking the pill to let my body return to its normal state. With no luck I saw a handful of different doctors, that told me everything looked fine and I was just paranoid. Tests were negative for STDs, doctors didn't know what to do with me. My family physician told me my husband was probably too big, and I should practice with dildos to widen my vagina. I was sick and tired of no one knowing what the hell was wrong with me, and belittling my problems because I was young. Last year I got really sick, throwing up for days with intense back pain. I couldn't get out of bed, so I finally went to the E.R. I found out I had ovarian cysts and one of them ruptured, causing fluid build up in my back and abdomen. I saw an obgyn to follow up, and she told me the only way to control cysts is by taking birth control to stop the function of my ovaries. Due to my trouble with the pill in the past, I gave up and forgot about it. A few months ago the swelling really took a toll, becoming worst and worst. I couldnt take the pain and burning anymore, so I did some research and self diagnosed myself with vulvodynia. Now knowing vaginal pain was a condition, I was able to find myself a vulvar specialist who specialized in the treatment of vaginal pain. He recently diagnosed me with vulvar vestibulitis and pelvic floor dysfunction. All in all, I've been battling with vulvodynia for 4 years now. I can't have sex or use tampons (which sucks because without the use of birth control my periods are wicked heavy). My husband is extremely supportive of my condition (thank god) and we are taking things one step at a time. My advice to those of you with vaginal pain.. Seek a specialist. Don't waste years of your life bouncing from doctor to doctor like I did! They made me feel like I was crazy, and what was happening to me wasn't real. Turns out it's very real, health professionals just don't know what to look for. My vulvodynia hasn't gotten better, in fact it had been getting even worst. But, I take comfort in knowing I have a diagnosis now, and im not the only one. You'll feel better when you find out what's wrong. It kills me knowing im so young battling this, i cry constantly. All i can do is keep trying, and hope for the best.

mrs.optimistic

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Re: 20 years old with vulvar vestibulitis

Post  mikan92 on Fri May 15, 2015 12:08 pm

Hi!

Just wanted to say you are not alone in this!
It's really horrible to be going through all these esp at such a young age Sad I'm 23 this year and at first was really really scared about having this for the whole life, not being able to have pain free sex etc. But after reading all the successful stories here I think everyone can get relief, it's just the matter of time in finding the right one Smile I did cry a lot too, but impt thing is not to lose hope! Please believe that there is something for you (at least that's what I'm trying to do now). You can talk to others in this forum they are all really helpful and nice. Some posts have good advice on treatment options too. Don't be scared, even though we are young we can still win this battle! We can't let this ruin our lives we still have so many things to explore and so many things to enjoy in life Very Happy

mikan92

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Re: 20 years old with vulvar vestibulitis

Post  mrs.optimistic on Sat May 16, 2015 8:27 am

Thanks so much, that means a lot to me right now. If you aren't giving up, well I can't either. I'll keep reading and researching. So far I'll be trying coconut oil and a probiotic. Maybe even switching to all natural soaps/washes. Wish me luck!

mrs.optimistic

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Re: 20 years old with vulvar vestibulitis

Post  mikan92 on Sat May 16, 2015 10:05 am

No prob!
Coconut oil is good I'm using that too. Some people ingest 2 spoonful daily and got relief, I've been trying but personally don't think it's working for me Sad
Hope the probiotic works for you! Keep me updated with your progress cause I'm also in search of more things that might work for me Smile

mikan92

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Re: 20 years old with vulvar vestibulitis

Post  Breathe46 on Mon Jun 29, 2015 3:47 pm

Hi Mrs Optimistic,

I am shocked to hear your story because mine is very similar. I have had vulvodynia for the last four years (started at 25 ans im 30 now) and it all started with a yeast infection that I tried to treat with Monistat. Like you, I had intense itching and pain and had to jump in the shower and nearly screamed in pain (worst pain of my life!). I had to go to the ER where they told me I probably had some kind of allergic reaction and gave me anti-yeast pills to treat the infection. Things got better for a few months until I noticed intense itching periodically and also severe pain when I tried to have a pelvic exam to the point where I could not tolerate it. I was diagnosed with vulvar vestibulitis and I went to see a specialist who told me she thought it was all muscle related. I went to pelvic physical therapy for three months which initially hurt a lot but I tthink helped eventually but I had to stop going bc I needed to go to school and didn't have time or a nearby physical therapy place for this (it is somewhat rare). Since then I have had flares that come and go, especially at the end of the day and during periods. It never goes away completely but some days it almost does only to come back Witt a vengeance the next for no foreseeable reason. I currently use lidocaine gel when it hurts a lot, all hypoallergenic products, and cold water after going to the bathroom which numbs the area. I still can't have a pelvic exam (I refuse to) and I also refuse to date bc it causes me to much stress dealing with this problem. I think the Monistat caused everything and I severely regret using it and ruining my life. I think we should all band together and get them to write a warning label on it because NOBODY deserves to have his happen to them.

Mrs Optomistic, I am so glad your husband is supportive of you. If you ever want to talk we should exchange emails because it's always good to have support. I currently hope to be able to try physical therapy again in a year bc I have an intense job right now. Prayers to all of us who are suffering from this dreadful condition.

Breathe46

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Re: 20 years old with vulvar vestibulitis

Post  Emmae394 on Tue Jun 30, 2015 4:13 am

What is this "physio" that everyone is speaking of? I'm new to this forum and am seeking out any options to help manage my PVD!! Currently on 30mg of Nortriptyline, daily use of an estrogen/lidocaine compound cream and self pelvic floor muscle therapy with a therawand. All prescribed and suggested by my doctor who specializes in vestibulodynia. I'm 21 years old and have been dealing with this ever since recovering from chronic uti's for 2 years. Never thought I would have issues like this! My vestibulodynia has developed over the course of a year and a half. Started out with no pain, to slight pain in one small spot, to intense burning in generalized area after sex. This sucks! Trying to stay hopeful though

Emmae394

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Re: 20 years old with vulvar vestibulitis

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