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» What's next?
Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


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

Hello
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)

Millie

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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!

Millie

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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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