Vulvodynia

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I have suffered with Vulodynia for some 7yrs now! It took 4 yrs and the internet to help my GP realise what it was! Before then I was constantly treated for yeast infection, even though my swabs came back negative!

I have had all the tests under the sun, patch testing, STD testing! All very embarrasing and all very hard to explain to friends and family! I mean how do you tell your partner of 10 yrs that you need to go to an STD check up? I have been stupid enough to suffer it alone for the first 4 yrs, thinking it must be in my head if they can't find it, and then when it finally got so bad that I would be happy to jump out of a window than spend another day pretending all was ok, when I was burning below... I finally told my sister, and what a sister she has been, if not for her and the love of my partner, I would have given in along time ago. My pain is very real, my life was once fun and full of life, I was normal, happy nothing wrong with me, and then one morning I woke with this! I worry that the lack of knowledge and care will end me with cancer. Doctors don't seem to know about the condition and those who may have heard of it tend to treat you as though it is all in the head. I am 34 now, still suffering, oh I have a good day, I think its all ok I can go out and get my job back, but the moment I try.... the pain hits hard to remind me it's always there! I am lonely, I don't want people knowing what is wrong with me.... sometimes I think it would be better if I did have a well know illness, I find this embarrassing to mention, and you will be suprised of how many people do not know what a vulva is! So for those of you suffering as I do, the cool \\baths still help, aqueos cream is a saver... cake it on, and cover yourself in a long skirt, forget pants! Gabapentine was good, but I got up to 3000mg a day and it started to cause other problems! I don't know if you are like me, but I get dressed, rush out to get everything done, so that I can come home, jump in a bath, cake my cream on and put my cotton over large pj's on. Then hope no-one comes to the door to see me ready for bed at 2pm! It's no life anymore is it! But we keep getting our hopes up looking and sites like these. :cry:

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  • Posted

    I can fully sympathise with you. I started with what as been diagnosed as vulvodynia. But like you there does not seem to be much help out there. What is this thing? I ask myself and why does no-one seem to come up with a cure? It seems to get dismissed as nothing by my GP. Like you my partner is brilliant and gives me great support but we both get very frusrtated by the lack of information available about this problem. Most if not all web sites are in America where i Must say they seem to have a better understanding than here in the UK. I have just been looking at a web site TIPNA which has just made me think that it may be a condition called Padundal Nerve Entrapment not Vulvodynia. Treatment in Eirope for this is mainly in France. Not much hope for us then. Hope this is of some help. Good luck
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  • Posted

    Hi I have also suffered with this for 2 years, I am taking amptyptyline but has no real effect. Like you I do not think i could hold down a full time job as it is such an embarrasing complaint, only my husband knows about it. I was putting emla cream on but that seems to have lost its effect. I just want to cry, The doctors are not at all sympathetic, and you cant tell anyone what the matter is because of the embarrassment. I am trying accupuncture now but have only had 1 treatment so far. Having a really bad day today.There doesnt seem to be any help out there for us. I have also been to std clinic to have all the tests - all negative. I feel like cutting it out. If anyone has got any treatment for advice PLEASE let me know. VERY DESPARATE>
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  • Posted

    i've also been diagnosed with vulvodynia and although it isnt as severe as some of the symptoms you're described, it's pretty much ruined my sex life sad

    i recommend this website which has got really useful information and advice:

    http://vulvalpainsociety.org/

    there are good suggestions for treatment.

    please don't despair, if the medication you're using isn't working then try a different one.

    my doctor prescribed me a steroid cream which helps a bit (it calms down the inflammation). i just found out about lidocaine gel which you can use to numb the pain, so i'm going to ask for that and see if it helps with sex.

    also apparently some anti-depressants help - not because it's in your head, but because they stop the pain signals. if the one you're on isn't working you could try others.

    it's really important to have a sympathetic doctor, so if your GP isn't helping, go and see someone else, or demand a referral to see a specialist eg. gynaecologist. i've seen on websites that some medical centres and hospitals have specialist vulval health clinics so you could try and find one of those.

    good luck everyone. it's such a comfort to know i'm not the only one

    xxx

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  • Posted

    Hi i have had this for years as well and i findit totally embarrassing. It would be nice to actually meet someone with it but it is so embarrasing that only my husband knows about it. I am on gabapentin now but it doesnt seem to have mucj effect. It is so frustrating that no one really knows how to treat it. I look at people and think have you got it but if they have tight jeans on i know that they cant because i could never wear them. I have have chnged my wardrobe to make symptoms better. Doctors have no real sympahty, one dermotolist i was seeing simply washed her hands of me and told me there was nothing more she could do!!! It is a very depressing condition
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  • Posted

    I have had vulvodynia just over a year and I have a great GP who will listen to me and we work together when it comes to my health so I am really very fortunate.

    I was given Tegrotal but had such an adverse effect so had to come of them. I looked for 'alternative' ways to help this awful condition and have found that after about five weeks being on a low oxalate diet has really helped me together with washing after going to the loo (using 100% white cotton cloths to wash and dry me), using 100% cotton sanitary ware, pelvic floor exercise, only using the shower not the bath to wash in, washing my hair separately, using nothing but warm water to wash 'underneath', 100% white cotton pants, using only white unbleashed toilet paper and taking calcium.

    I know the above may seem a lot to do but honestly my condition has improved by about 60% I still get 'bad' times but anything that helps is ok by me. My doctor is still very supportive and encourages me to try alternative treatments which is great. He's aways there for me.

    I'm starting a new job next month which means I may have to sit down quite a bit but I use a rubber ring when sitting which relieves some of the pressure and was worth buying.

    Hope this helps someone as I know just how ill you can feel suffering with Vulvodynia.

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  • Posted

    I have just returned from gynaecologist with vulvodynia diagnosis after months of worry about what might be wrong with me. I too have been checked for STDs and found none and have spent nearly 3 years feeling embarrassed about my sudden inability to have and enjoy sex the way I used to. It is very comforting to read other peoples experiences and know that I am not an unusual case.

    I do feel a little sad that we seem doomed to 'manage' this condition rather than get through it. I have been watching 'Spa of Embarrassing Illnesses' recently and wonder if we could be treated for this in a holistic/detox way - anyone gone down this route with any success?

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  • Posted

    Hello!

    My name is Renae and I have suffered from Vulvodynia for four long miserable years.  So annoying!  I used to have the best sex life until this nightmare called Vulvodynia occurred.  Now I have pain upon penetration or inserting tampons.  While doing research to find something to help my pain I came across vuva magnetic dilators.  I've never tried anything like this before.  Has anyone tried this product?  I think I'm going to ask my gyno on my visit next week to see what she says.  Any help and/or support would be appreciated. 

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  • Posted

    Hi, I have been looking for a forum to share my experience of vulvodynia, and offer some hope. I had vulvodynia for 10 years, following recurrent thrush and then coming off the pill, on doctors' advice, after many years... the docs all said there was no connection, even though the first pain came within 24hrs of stopping the pill. Anyway, the vulvodynia was pretty bad, with pain becoming unbearable if I stopped taking the meds (pregabalin and duloxetine). I had resigned myself to 'managing' this condition. I went around the usual cycle - GUM clinic etc - and finally went to a pain management clinic. A young woman there advised me to massage the vulval area: the impulse is to avoid this area, but she told me it is better to reacqaint yourself! The first time I tried I stopped pretty quickly as it really flared up the pain. So I stopped. However, under another stimulus (!), I did start it again a few months back and I am very pleased to say that my vulvodynia is much improved! I have even given up taking the meds. I guess this should all be done with the knowledge of whoever is looking after you, but it seems a fairly straighforward way to try and find relief. Hopefully some of you will also find it works. Good luck! 
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  • Posted

    Hey.

    I hope you are all well.

    Is the discomfort mainly during sex or is it also throughout the day when your body discharges a little? Have you tried a ph test to see how acidic you might be? Ever looked into Cytolytic Vaginosis where basically you are too acidic for yourself causing your own bodily fluids to harm your vaginal walls? To the point where they are inflamed and sore so you can't have sex?

    My girlfriend is going through something similar at the moment after having recurrent thrust for the past year. She got rid of the thrush and now has too many good bacteria causing too much lactobacilli

    I wish this was easier for us to find an answer

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  • Posted

    Hi all you poor suffering ladies. This condition sucks! However a positive mind and a glass half full approach seems to have an impact on this type of pain. My story in a nut shell is that I first experienced this in my late twenties following a vaginal infection ( I think thrush) and was so embarrassed to explain symptoms to my doc that he prescribed antibiotics for a uti which made the problem 10 times worse! 4 months later and nearly at my wits end In horrible pain daily, I was given a soothing gel and some amitriptyline tablets and boom it was GONE!!!!!

    Nearly 10 years on and two children later I have just started to experience the same symptoms!! Can't believe it. Treatment for thrush and BV has not worked so I'm guessing (as I am happily married so not an STD) that this bloody thing is back.

    It Defo improves when I'm relaxed, lying down, have a few drinks on a night out but can't get it to disappear. Is it just nerves? Is it thrush not showing up? Is it in my mind?

    Why is this so emotional? Because it affects such a private and sensitive area or is it because there is such little medical advice out there?

    For all of you suffering it can go, completely go...just a bugger to get rid of and no link as to why it happens??? The only link I can make is the oral contraceptive. I have not been on it for years and recently trying hard not to have a third baby I have been trying a couple of different pills and bam!! This bitch is back!!! Determined to get rid of it once again as I know my lady bits work just fine...they are just having a bad and irritating time right now!!!!

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    • Posted

      My advice would be stop any type of Birth control. And get back on amitriptyline. Also consider acupuncture. Does your back ever hurt? In Many cases it's all linked together the nerves are damaged

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  • Posted

    VuVa Dilators really helped me. Using them right before sex really worked. 
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  • Posted

    Hi ladies I've recently been diagnosed with vulvodynia myself, I really don't know anything about it all I can share with you is that I have tried trust treatment a course for a week with no improvement antibiotics seem to make it worse down there( severe redness) I've been checked at the gum clinic and nothing came back I have inflammation inside opening and itches a lot inside and outside occasionally does this sound like vulvodynia?

    I just don't know what to think ....

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  • Posted

    How are u now? Recovered I hope

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