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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, …

Comments: 9

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


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

New Member - Not Offically Diagnosed, But Frustrated

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New Member - Not Offically Diagnosed, But Frustrated

Post  ehalaska on Tue Oct 29, 2013 8:23 pm

About three months ago my partner and I got into a pretty deep discussion about our lack of sex-life. I told him that I had actually been feeling pain for probably the last two years. Since I was regularly getting bacterial infections and yeast infections I kind of always just assumed that it was something that would go away. But when he brought it up, it sort of blew me away that it had been that long. I realized it was a bigger issue.

So I made an appointment with my regular NP at the local women's clinic. She found a small amount of both bacteria and yeast, but she also suggested that Vulvodynia may be the underlying culprit. The clinic I go to leans towards the natural, so we tried an alkaline cleanse to flush out my system, boric acid suppositories, and we did do a bomber antibiotic to try and deal with the bacteria. The bacteria didn't go away, and I'm still experiencing pain during sex. She's also referred me to a physical therapist for pelvic floor therapy. I haven't yet had my first appointment.

Reading on here, it's clear that what's going on with me is not even remotely as severe as it could be, but yesterday my partner had a bit of a meltdown about our relationship and sex-life. We've been together eight years and for most of those years we were really sexual. But the last couple have dwindled. I've now realized that it's due to the fact that I've been experiencing pain, which I kind of just have been plowing through because I still feel pleasure, and still want him to be fulfilled, but because of the pain, it's really hard for me to initiate. If he initiates and gets me going, I can just kind of ride the train through the pain and then deal with burning afterwards.

I think the most frustrating thing is that it all feels like a guessing game to me. Maybe I have vulvodynia, maybe I don't, but even if I do, that doesn't actually help anything because it seems like every treatment is a guess.

The one definite thing is that I feel sharp pain during vaginal penetration and experience intense burning after sex - every time. The meltdown my relationship had yesterday covered a lot of things, but more than anything, it felt like it was the lack of intimacy, and my seeming lack of interest in sex, at the root of it all. I'm getting worried, and frustrated, and a little scared.

He's a good partner, and I think with this being new to both of us, I'm not sure he realized just how much pain I've been in (probably cause I never told him...). Talking about it last night he suggested I get online and try and find a forum and see if other people have ideas for treatment. Don't know why I haven't done it before, because just reading through these other posts at least made me feel less alone. Really glad I found this site


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Re: New Member - Not Offically Diagnosed, But Frustrated

Post  EviE°Bee on Sun Nov 03, 2013 4:01 am

It could be your hunny giving you an infection, it's not unheard of. Unfortunately, sex and VV go hand in hand regarding pain.

Here are a few tips I've heard of, maybe they will help you:
° Lidocane 10-15 mins before sex, nickel sized amount.
° Cold compresses after sex can really help
° Baking soda bath with warm water, not hot
° Gentle sex
° Try different sex positions, some don't cause as much pain
° Non penetration sex. It's a long list, you should look that up.
° Anal sex (not for everyone)

Personally, I used to have sex often, right now it's 2x a month, maybe 2x a week. It just depends on how your feelin. If I have 2-3 good days (pain is 1-2 on a scale of 10) then i'll try and have sex. If not then he can wait lol.

Hope this helps a little.

Evie bee


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Re: New Member - Not Offically Diagnosed, But Frustrated

Post  Kathy100 on Wed Nov 06, 2013 11:46 am

Hopefully the physical therapy will start to help you - it has done with me. Other things to try are deep breathing and pelvic drops to relax the whole pelvic floor area (which is usually tight if you have v as the muscles tense up) before & after sex. Amy Steins book Heal Pelvic pain has some exercises in to stretch the pelvic floor.

Lidocaine numbs the area - so can work or you could ask your doctor for some painkillers - notriptyline helped me with burning initially.


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Re: New Member - Not Offically Diagnosed, But Frustrated

Post  tinkerbelle2 on Sun Nov 10, 2013 9:59 am

Hey ehalaska,

I totally get what you mean about the guessing game. It seems to be a really vague condition. I was told that vulvodynia is kind of an umbrella term which just means 'unexplained pain in vulva/vaginal area'. It isn't a disease or infection but more of a condition. So if that's what you have then you can call it vulvodynia. I agree with all Evie bee's suggestions. And keep trying with doctors! I try and think to myself, if there was a time when I didn't have this, surely it can go away again.

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Re: New Member - Not Offically Diagnosed, But Frustrated

Post  Fingerscrossed on Tue Nov 12, 2013 10:51 pm

I also only have pain during sex, so I understand your frustrations. My issues started about four years ago and I have always had pain during pelvic exams and at the beginning of sex, but for a while it was fine. I was diagnosed with vulvodynia and pelvic floor dysfunction in March and have since been placed on meds and regular physical therapy. I'm going to have a vestibulectomy in December. My now husband does get frustrated with our lack of a sex life, particularly since I tend to avoid too much intimacy, but he has been wonderful.

I hope that your problems get better without resorting to surgery or medicines! Sounds like you've got a good, supportive guy. Just keep communicating with him.


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Re: New Member - Not Offically Diagnosed, But Frustrated

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