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    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

    Post Vestibulectomy

    Thu Aug 03, 2017 6:15 pm by infinitelywondering

    Heya,

    I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

    However, today I came home and have done the following things:

    -washed with warm water
    -applied manuka honey to the area
    -ensured I wash at least 3 times a day and dab the area dry gently
    -use frozen peas to stop the swelling

    As of now I am …

    Comments: 1

    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: 3

    Anyone from the PNW?

    Sat Aug 05, 2017 7:54 am by jungleclover

    I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

    Comments: 0

    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: 22


    Just Diagnosed with Vulvadynia

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    Just Diagnosed with Vulvadynia

    Post  CherryTree23 on Tue Aug 02, 2016 9:11 pm

    Well, I was just diagnosed today, yay...my symptoms are just burning pain in vaginal opening. This all came about after taking Bactrim, Monistat, Clindomycin and Diflucan. This doctor was extremely confident I have Vulvadynia. Also told me my vaginal skin isn't red. Yes, it is, mine isn't typically electric red. He prescribed Ampytripline (sp) said, I have a very mild case, and worse case scenario we'll just remove the skin...yikes. This doctor was a jackass. Now, getting depressed, scared and a burning vagina. Someone please help

    CherryTree23

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    Re: Just Diagnosed with Vulvadynia

    Post  emalita on Tue Aug 02, 2016 11:12 pm

    Vulvodynia simply means "chronic vulvar pain without an identifiable cause" (per the National Vulvodynia Association). It is a diagnosis of a symptom, not a disease. The cause of the pain or burning is different for everyone. It can be caused by things like nerve issues, irritants/allergies, disrupted flora (inflammatory vaginitis - this is part of my issue), undiagnosed skin conditions (lichen sclerosus, lichen planus, etc.), pelvic floor dysfunction, etc. So don't be too nervous because the doctor basically just told you that he has no idea what's wrong with you, and I would personally be very leary of a doctor who starts talking surgery so soon.

    I would really recommend finding a vulvovaginal specialist who treats women with vulvodynia on a VERY regular basis. They are your best bet for proper guidance with treatments, but sometimes they can be useless idiots, too.

    You've only had this pain since May (not diminishing your symptoms in any way); so you are still in the early stages, and hopefully you can help prevent it from getting worse. My advice is still the same...do not put anything on your vulva or in your vagina. Please give your lady bits a chance to figure themselves out. Certainly take the amitriptyline as prescribed since it is, I'm assuming, in pill form, but if your issue was caused by antibiotics and then irritated by antifungals, I can tell you with absolute certainty that throwing more lotions and potions at it is only going to make things worse.

    Please be kind to yourself and take a few deep breaths before using another vulvar or vaginal treatment. You will get through this and will more than likely have a greater respect for your lady parts in the end Very Happy

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    Re: Just Diagnosed with Vulvadynia

    Post  CherryTree23 on Tue Aug 02, 2016 11:30 pm

    Thanks so much for your reply! The Doctor was just so cavalier about it! He was so sure these nerve pills would get rid of all the pain in a few days...From my reading it looks like it can take much longer!

    I will definitely not be putting on any lotions, that's for sure!! This whole thing is so confusing. I guess I wasn't looking at this as a broad diagnosis. It's hard to really understand what exactly this is!

    CherryTree23

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    I am cured of Vulvodynia

    Post  angelique2016 on Tue Aug 16, 2016 12:13 pm

    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 for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) used sparingly every night only before going to bed, and not to wash to much off in the shower in the morning. I did this for about 3 months, took the Nortriptyline at night before bed and used the ointment at night before bed. This worked, why, because the Nortriptyline, is for pain, and makes the brain stop thinking about the pain, as it has now become persistent pain, and the ointment, soothes the skin and it has properties in it to help heal the skin. Anyway I stopped posting on here as I was getting abused by people that were not able to get a hold of the medications in other parts of the world. So if anyone is interested in this information, and if you can get these medications, then it will cure you, you will need to do your pelvic floor exercises after you are cured to help strengthen the muscles again, but I hope that this information can help some people out there, as I know how extremely excruciating this problem is, it bought me to tears, and no sleep and could hardly sit, wanted to go to the hospital so many times, I nearly went crazy with the pain, and of course no intercourse what so ever, could barely even wee without pain, had to wear loose clothes, not tight jeans what so ever.

    So I wish everyone all the best, please dont write back nasty things to me, simply because the medication might not be available in your country, perhaps look for medication that are of a similar nature that will help you. All the best everyone! Smile

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    Re: Just Diagnosed with Vulvadynia

    Post  Linda Williams on Sat Jul 22, 2017 2:13 pm

    So, what type of treatment have you had with any luck.
    I was diagnosed about a year ago but am sure I have had this longer although no doctor has ever diagnosed that. I have a very long history of UTI's. I have had a, hysterectomat age 51. Then painful test to see if I had IC., again infection after infections.intercourse very painfu. I had bladder repair in 2006. Went for quite some time without infections but I intercourse still painful. Then infections started again. The urologist did 1 exam in almost a year. I would have a UT I antibiotics ...finished them infection again. Finally found a doctor ob/gyn, sub specialty bladder. I have had several, infections. Then diagnosed with vestibulis, and vulvadynua. I have used nystatin, clove tail & topic or plus Premarin vaginally. Last week he had a compound of baclofen, gabpentin, & amitriptylene, it burns but was SO red down thre...this medicine may take weeks to help Any of you ever used this? Wondering about seeing a dermatologist.

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    My cure for Vulvodynia

    Post  angelique2016 on Sat Jul 22, 2017 2:34 pm

    Hi Lyndia, my doctor prescribed the following Advantan Fatty Ointment, applied sparing once a day and only at night before going to bed, around all the affected area, try not to wash it all off the next day in the shower it helps to heal the skin.  This product is available in Australia and only a few other countries, it might not be able in the UK or US.  To alleviate the brain thinking of the pain, take on tablet 10mgs of Allergron Nortriptyline Nortriptyline is a second-generation tricyclic antidepressant marketed as the hydrochloride salt under the trade names Sensoval, Aventyl, Pamelor, Norpress, Allegron, Noritren and Nortrilen  Take this just before you go to bed, it is used to stop the brain thinking of the pain, it used for pain management in low doses.  It takes about 3 months in total to get it under control, no intercourse, and thereafter pelvic floor exercises to strengthen the muscles again.  This worked for me very well, but I am not sure if you will be able to get the Advantan Fatty Ointment, it must be the ointment, it stays on the skin and prevents the urine from burning the skin constantly.  Anyway I hope this helps either yourself or someone else, as I know how painful this dreadful skin problem is.  xxxoo

    Advantan Cream is available below on a UK pharmacy where you can buy online.  It might still work, may not be quite as effective, but it has the same ingredients.
    https://www.unitedpharmacies-uk.md/Advantan_Cream_Methylprednisolone_Aceponate_01_15g_Tube_p_1411.html

    or maybe here
    http://o-t-c.co.uk/advantan-buy-online

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    Re: Just Diagnosed with Vulvadynia

    Post  Linda Williams on Sat Jul 22, 2017 3:17 pm

    Thank angelinue! Is this a prescription or over the counter ?

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    Re: Just Diagnosed with Vulvadynia

    Post  angelique2016 on Mon Jul 24, 2017 1:57 am

    prescription medication.

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    Re: Just Diagnosed with Vulvadynia

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