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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules


I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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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 …

Comments: 4

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

Fri May 27, 2016 6:50 am by Lucci


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

completely miserable

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completely miserable

Post  yellowbird on Fri Jun 22, 2012 9:02 am

I'm happy I found this forum, I am just completely fed up and sick of my vulvodynia. I'm in the US by the way. I'm really relieved to see other people have this. I've been suffering all alone for years now and I can't take it anymore.

I used to have a really great sex life, I'd have sex all the time. There were a bunch of events that happened in my life at the same time and sex suddenly became extremely painful for me.

1. I was raped
2. the stock market crashed (lots of stress)
3. I was getting laser hair removal of my pubic hair
4. I had recently stopped taking all these medications (which included neurontin) as my parents had been medicated me for something I did not have for 11 years prior)

suddenly I couldn't have sex with my fiancee anymore. It was awful. He was 100% not understanding of my problem.
I talked to my therapist about it and she thought the pain must be psychological. I go the stupid recommendation by some doctor somewhere to have MORE sex, to schedule sex, make a point of it.
that I think did the opposite of what the advice was meant to do as the pain only got worse and worse.

fist my gyno diagnosed me with vaginismus and told me it was psychological. a year later it was worse and she said I also have vulvodynia which was psychological and I got some gabapentin cream which I'm supposed to keep on my person at all times and apply to the inside of my vagina every 4 hours. it helped so little and destroyed/stained my underwear so I stopped using it.

my biggest problem is my fiancee who is sort of a sex addict but refuses to cheat on me and hates masterbating.
it's this awful cycle.

start cycle: he wants to have sex.
I say no
he argues with me
after a week of being bugged about it I decide I have to do it because I feel bad for him.
I cry during sex
then he sees me crying and feels bad and promises to never have sex with me again
a week goes by and he wants sex again
I say no
we end up having anal sex because he doesn't want to hurt my vulva - which hurts worse than regular sex and I feel awful that he seems to be suffering so much form not having sex
he sees me crying and promises to never have sex with me again
wait another week, start over.

this has been going on for YEARS. honestly, I love him and he's a fabulous guy and treats me SO well EXCEPT for the sex thing. back when I had sex all the time this wasnt a problem at all - but he cant deal with the fact that I can't keep up with him at all. this has made my vulvodynia so much worse - and sometimes I've ended up cutting myself on the arms because I can't deal with the fact theres something wrong with me. I've been able to not cut myself for a few months now, but I'm having trouble with it tonight, so instead of cutting myself I came on here.

I've tried using lube - and it doesn't seem to matter which kind I use - it BURNS. even the kind my gyno had me pick up. sex feels like searing hot sandpaper, and after sex the pain doesn't go away for days. I think there's something wrong with me that I allow him to do this to me, and I sometimes volunteer it - but I always regret it. The I hate him for days - but it's not his fault - I let him do this.

part of why I think I also let him do it is that I was in a car accident about 2 years ago (after the onset of vulvodynia) and I'm in terrible pain all the time in my shoulder, so he rubs my shoulder for me. except he CANT just rub my back, he HAS to have sex if he's going to rub my back, so I trade the pain in my back for pain in the vulva, which in turn makes my back tense up even more.

ah - there's something wrong with me! I ant stop crying tonight. I let him have sex with me earlier and cried again and I can't believe I let him do this to me, and then I'm angry with him for not seeing that this is damaging me.
does anyone else have this problem?


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Don't lose hope!

Post  jmcmil on Sat Jul 07, 2012 4:43 am

Hey, I am new on here and just read your post. I want to commend you for not cutting yourself and turning to this site for support. You are NOT alone! Your cycle of sex sounds destructive to you. I know when I force myself to do something that hurts, then it feels worse later. Communication with your fiance' is key. Have you tried other methods to please him besides sex? I know you said he does not not masturbate, however there are other forms of sexual pleasure. You are brave for putting your story out on this site. Don't give up and keep trying things. I, like you have had the creams that not only stain my underwear, they have gone through my pants b/c wearing underwear hurts me...talk about embarrassing..You might want to think about trying a medication like Neurontin, such as Amitryptaline to help with the nerve pain down there..it's just a suggestion. I take it and alot of other women on this site seem to take it and it helps. Don't give up and keep turning to this site for support! Hang in there! I hope things get better for you..


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Test for Ureaplasma

Post  lavrose on Sun Jul 08, 2012 2:38 pm

Ok guys. I promised God that if he helped me find a cure for this horrible, life ruining, afflicting, 24/7 misunderstood condition, I would share it with everyone, as I have done TIRELESS research, read every book, scoured the net, and consulted with many doctors. Im 32 years old.
Ive always had a problem with painful sex, and a constant burning vag, but recently I was diagnosed with something far more horrible. Interstitial Cystitus.
Painful Bladder syndrome. Many women with Vulvodynia, many times have interstitial cystitus aswell, and I do frequent UTI's and I control them with a daily probiotic, but this particular bladder infection would not go away. Guys, this condition has literally ruined lives. Women hav e to go on disability for it. Imagine a voracious, raging UTI that never goes away. ever. and there is no cure. Its one thing not to be able to have sex, or sit for too long, or wear anything tight. But to be aware of constant, swollen, urethral frequency and burning, having to go to the bathroom every five minutes, cant sleep thru the night, the pain is compared to Cancer. People have to go on methadone, and antidepressants over it. Anywho, After I wept and begged on my knees for God to cure me, and help me, and even called a prayer line (LOL!!) and cried on my moms shoulder, (she prayed with me for a cure also) I made an appointment with a Urologist in Cleveland, Ohio at the Cleveland clinic. The best in the country. I got diagnosed with Ureaplasma, and Im currently on a strong 30 day course of antibiotics, (augmentin, zithromax, doxicycline) then I will be on long term antibiotics for the duration, until I test negative, which could take over a year.
Many people dont know too much about Ureaplasma, so please, please google it, and try to find a doctor that will hear you ,and test you. There are links to this with V too.
The test is expensive, and many doctors havnt even heard of it, so you have to shop around. because Ureaplasma is linked to IC, (urethritis) it is also linked to infertilty, miscarriage, and premature birth. Maybe shop around for fertility doctors, say your trying to get pregnant, and your concerned about Ureaplasma. Its worth it guys, I feel 100% better now that I am taking the proper treatment. This little bacteria is prolly the the one responsible for a lifetime of pain, and ruined relationships.
The oils. I make suppositories with coconut oil, (frozen, in sport bottle ice cube trays) with various essential oils, and Ive been able to have a sex life and sometimes, pain free sex life, since I started this. The thing is. You have to rotate the oils, I learned this. For a couple of years I was just using tea tree (and douches are horrible by the way, please dont put them in douche, been there, done that) after awhile, it didnt work and I didnt know why. The Boric acid suppositories. Worked for awhile, then didnt work at all. Then Myrrh oil. Which is great by the way. Then lavender and rosemary oils. Also awesome. Then Tyme oil, and oregano oil. Awesomness. Also, grapefruit seed extract is great too. Now Im doing Geranium oil, and its the skin of my vag is very soft and supple, non itchy and completely burn free. It feels strong, and healed...Im totally down for sex atm ), but currently single again (..but yea. Start out with a few drops, first few days, then work your way up to where you feel comfortable. I use quite a bit, especially for raging pain or infection, but everyones different.Theyve

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