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    Diagnosed recently, looking for advice

    Sun Sep 02, 2018 12:51 am by Cloudberry

    Hi everyone,

    I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

    I’m a woman in my late 20s. Before getting diagnosed …

    Comments: 3

    Hurting, Burning, Itching, and Worn Out

    Thu Aug 09, 2018 10:55 pm by donnambr

    This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

    Comments: 5

    Hi girls! New in this forum

    Fri Jul 13, 2018 2:31 pm by Gaby

    Hi everyone!

    Also joining the V club, Here my story:

    It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

    Comments: 1

    Newbie and feeling helpless

    Wed Jul 11, 2018 1:52 pm by Taylor1

    Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

    Comments: 3

    I'm new to this forum and would love some advice! :)

    Tue Jun 05, 2018 4:13 am by anikita

    Hi lovely gals!

    I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

    I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

    Comments: 6

    From a concerned husband

    Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

    Hello everyone,

    This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

    I’m sure a lot …

    Comments: 3

    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: 10

    Gabapentin Gel. or other topical creams

    Thu May 10, 2018 9:43 am by Rosie21

    Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

    Comments: 1

    What has been helping ME (much less pain over time!!)

    Wed May 16, 2018 3:43 am by leoscc

    Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

    1. I …

    Comments: 0


    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

    emalita

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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

    angelique2016

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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.

    Linda Williams

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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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