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» Vestibulectomy today and no pain
Today at 3:28 pm by Dsrt16

» vestibulectomy success
Yesterday at 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:06 am by Jgreen81

» Pain aftee vestibulectimy
Yesterday at 12:03 am by Jgreen81

» Freaking out because I don't think surgery worked HELP!!!!
Yesterday at 12:01 am by Jgreen81

» Vulvodynia help
Wed Nov 15, 2017 1:04 pm by ekaterina1996

Tue Nov 14, 2017 9:53 pm by Dsrt16

» Needing some reassurance
Sun Nov 12, 2017 3:04 pm by Nicmay

» Vulvodynia burning mouth and bladder discomfort
Fri Nov 10, 2017 7:26 pm by Zbrown

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 …

Comments: 3

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 …

Comments: 1

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 …

Comments: 0

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 …

Comments: 4

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 …

Comments: 0

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 looking for self-care and treatment ideas

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New member looking for self-care and treatment ideas

Post  Millie on Thu Jan 15, 2015 4:12 pm

I am 25 years old and have been suffering from provoked Vulvodynia (Vestibulodynia) for the past year.

About 2 years ago I changed my contraceptive pill from Microgynon to Mercilon because I was experiencing side effects such as nausea and vomiting, however the side effects of Mercilon were much worse and I believe the main cause of all the problems I have experienced over the past two years; including vulvodynia. My skin and hair has become very dry and I have suffered from eczema on my arms and legs and also seborrheic dermatitis on my scalp, resulting in hair loss. I have become more anxious and stressed and have problems with digestion and bloating. About a year ago I started to experience pain during sex but tried to ignore it putting it down to vaginal dryness, the pain only got worse and worse until sex was unbearable. Believing I had thrush I used a clotrimazol pessary but this had no effect on the pain whatsoever. Weeks later I noticed a patchy, red rash on my back that was itchy and dry. A doctor explained that it was a yeast rash and prescribed me with a miconazole cream, after using this for over a week, the rash had engulfed my entire back, stomach, thighs and face. I was traumatised and had no idea what to do. I saw three nurses and three doctors and all of them were baffled, I was sent away with antihistamines and a hydrocortisone cream (something I was told would initially make the rash worse) and the rash calmed down and disappeared literally over night. On top of all of this I was getting urinary tract infections on a weekly basis. Believing all of these issues were down to the pill I stopped taking it, and noticed an amazing difference in the quality of my hair and skin, however sex was still painful so I was referred to see a Psychosexual Therapist after being told the pain was psychological.

I have now been visiting the same psychosexual therapist for the past 9 months who after taking some swabs diagnosed me with Bacterial Vaginosis, I was given a course of antibiotics I hoped that this was the end of the pain. Unfortunately it wasn't and after trying Trimovate cream with no success she referred me to the hospital last month where I was properly diagnosed with Vulvodynia. The doctor told me that it is possibly nerve related and advised me to take antihistamines and use a 5% lidocaine gel before having sex. The antistamines have not helped but I have recently been told to take a higher dose. The lidocaine gel helps but only very slightly and ideally I am looking for something to cure my Vulvodynia completely.

I am very much against the idea of taking Amitriptyline and will avoid it at all costs. After spending endless nights researching I think that I may have a hormonal imbalance, and that all of these symptoms are linked. I am waiting for the results of a blood test to confirm this even though my doctor has told me this is highly unlikely.

does anyone else with vulvodynia have these symptoms? or believe their vulvodynia is caused by a hormonal imbalance?

I have also tried; unfragranced soaps, moisturisers and washing detergents. (helped with skin irritation and urinary tract infections)
calcium vitamins (reduced pain when urinating)
drinking more water (reduced urinary tract infects)
different positions whilst having sex (helps slightly)
Latex free condoms (no help)
Lubricants (no help)
100% Natural tampons and sanitary towels (pain and irritation was reduced greatly in comparison to synthetic tampons)


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Re: New member looking for self-care and treatment ideas

Post  sailor_moon on Thu Jan 15, 2015 11:02 pm

OMG i dont believe it, your symptoms are just like mine, minus the skin rash. I had chronic nausea and vomiting 24/7. Every single day. And my vulvodynia started at the exact same time. My hair is falling out. I am constantly fatigued. My skin is dry.I get hot flushes. My vulvodynia symptoms are not just during sex, they are every day with no known aggrivators. It all started when I went off the pill. My vulvodynia is mainly itching and burning with nerve like pain in 1 side.

No treatment worked, antifungal, steroids, prebiotic, creams and lotions, antibiotics. Antidepressants because I got told it was all in my head (antidepressants made me so much sicker in terms of nausea and vomiting!) I got my hormones checked at least 10-20 times and the doctors said I was all good. What a load of shit that turned out to be! I got told it was all in my head and that I needed councilling.!

It took me 14 doctors and $12000 down the drain on non successful doctors and treatment til I found my current doctor. He did a hormone profile test which is when you get a blood test on day 7,14,21 and 28 of your cycle to measure what your hormones are doing from week to week. He also did an AMH hormone test. Well... results came back and we were blown away. I have very low estrogen, my FSH and LH are way too high and the AMH test as well as an ultrasound confirmed I have PCOS. Now this is where things get tricky. Most women with PCOS have high estrogen, not low!!. My Androgen is slightly high which is normal in PCOS.

I need estrogen, but the doctor also suspects I have endometriosis, which feeds and grows on estrogen. With endo, it can settle on nerves causing vulvodynia. So I am on a waiting list for a laproscopy and hystoscopy to see if I have it and remove it, and also see what else internally could be causing my vulvodynia.

So it's just a waiting game now for my upcoming op to come around and go from there. It could either be endo or the hormone imbalance causing my problems. I dare say a mixture of both.

Oh, and if you have any form of hormone imbalance, antidepressants will make it worse, hence me getting sicker. My doctor told me this info and was disgusted at how I have been treated. I came off them and feel so much better.

So yes, Get your hormones checked properly! Definitely! And get off any birth control because if you are on it the blood tests won't give an accurate reading.
I hope my story has helped you! Feel free to ask any questions!

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Re: New member looking for self-care and treatment ideas

Post  Millie on Sun Jan 18, 2015 8:11 pm

omg that's crazy, I have stopped taking the pill as well, it seems to me that the contraceptive pill just messes everything up and then even when you stop taking it you're stuck with the side effects. oh no it must be horrible to suffer with vulvodynia every day and not just during sex Sad I can only imagine how awful it must be.

I also got told the pain was all in my head to begin with and am constantly being told to use dilators. I cant believe you had to go through all that before getting some answers, my doctor was reluctant to give me the test as she believes there is nothing wrong with my hormones. so I am expecting to be told the same as you, that everything is fine when I really believe that it isn't.

I will definitely avoid the antidepressants after hearing your story! I'm still waiting for the blood test results but am thinking about trying a low oxalate diet but don't know much about it. I am also wondering if my vulvodynia is nerve related then how can my hormones be a part of the cause. its all so confusing!

Good luck with your op and all your tests and treatments, I hope everything goes well for you and you can figure out the cause of the vulvodynia. Thank you for your reply!


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Re: New member looking for self-care and treatment ideas

Post  sailor_moon on Fri Jan 23, 2015 11:04 am

Get your hormones checked. Obviously something hormone related has been going on for you to have been nauseated and vomiting on the pill. It has probably thrown everything out of whack. When my symptoms first started all I focused on was the vulvodynia, rather than focusing on what was going on with my entire body as a whole. Apart from vulvodynia I have nausea to the point of double vision, vomiting, irregular periods, Super heavy painful periods when I actually do get them, super sore boobs, hair falling out on head underarm and public area, migraines, hot gushes, period pain when I don't have a period, dry skin, extreme bloating, IBS, reflux, chills and fever on occasion.

If you can't get your doctor to help you, move on. Do your research on who the best specialist is in your area. Or try a really good naturopath.

Do you regularly suffer any other symptoms?

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Re: New member looking for self-care and treatment ideas

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