Vulvodynia

Posted , 5 users are following.

Hi there,

I have had vulval pain for a couple of months now. It started after a break up and was originally the most pain I've ever had in my life.

I also swear that I've gained an extra skin fold next to my labia minora.

I've seen 5 doctors now and diagnosis from each doctor varied from lichen sclerosus to yeast and behcets disease. I went and saw an actual gynecologist yesterday and she ruled it all out and said she could find nothing wrong. I'm pretty sure that she specifically said I don't have vulvodynia because it doesn't hurt when she pokes and prods? Meanwhile I was in pain all evening as the aftermath of that exam. She also said it is impossible that I would have an extra fold appear without surgery, but I swear my anatomy has changed!!

Is it possible to have vulvodynia that doesn't cause pain when being actively touched, rather after? Do gynecologists not diagnose vulvodynia? She told me to go to a neurologist next. Is vulvodynia not as a result of nerve damage? I have had quite extensive laproscopic surgeries to remove scar tissue that

bound together all my organs on the same side as I am having the pain.

That is another thing, the pain is right side only and in a very specific area.

Thanks

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8 Replies

  • Posted

    Hi I don't know about the volvodnia but if I was you I would go and see a dermatologist because I had appointments with about four different gynaecologist and not one know what was wrong with me I saw a dermatologist she did a biopsy and I was diagnosed with SL please go see one  

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  • Posted

    Hi Louv. I had vulvodynia four years ago for 1.5 years and in my determination to cure myself I became quite and expert. Vulvodynia is a common but under recognised condition. Few in the medical profession understand it and all it's forms. There are several classifications:

    The pain can be generalised all over the vulva area or localised in one spot to the front, back or either side.

    The pain can come on spontaneously or be provoked by touch.

    The pain can be intermittent, constant, persistent, immediate or delayed.

    It can also be a mix of these things.

    From what you say your vulvodynia is provoked, localised to one side and delayed (comes on some time after being poked and prodded. I thought I was better and I had a smear test. I was fine straight after to smear test but later that evening I was in agony and I was back to square one.

    The cause of the vulvodynia is different for different people. It can come on for no discernible reason, it can be caused by infection or physical trauma or injury.

    It is a nerve condition where the nerves have become hyperactive and hypersensitive. It is known as a neuropathic pain because it originates in the nerves.

    If you need any more information or advice please do ask. I am keen to help fellow suffers. If you have a look at the posts in this 'vulval problems' section of the website you will see a post I did called 'how I cured my vulvodynia'.

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  • Posted

    Hi Louv, sorry to hear about your bad experiences.  I can't tell you how many doctors/gynos I went to when I experienced pain in the vulva and like you got all sorts of diagnoses which didn't help.  

    Firstly, I feel that "Vulvadynia" is a catch-all term for pain in the vulva that doctors have no other diagnoses for.  Nobody knows what causes it or how to treat it.  Personally, I found my problem turned out to be dermatological and caused by my diet.  It turns out my skin is very sensitive to potatoes and tomatoes, any of the solanaceae family of plants which also include tobacco, eggplant, chili and bell peppers.  I only found this out myself when I got gastroenteritis for a week and couldn't keep any food down.  So I lived on liquid for a week; but my "vulvadynia" completely cleared up!  For the first time in seven years, I had no pain or itching!  Not only that, but I do tend to have arthritis, and that also cleared.  So that was my first clue that my problem was caused by naturally occuring chemicals in some of the foods I was eating.  I am vegetarian, and as I slowly re-introduced foods after the tummy bug cleared up, I found my symptoms would flare up whenever I ate any of the above-mentioned foods.  I've since cut them completely out of my diet, and have been pain-free for the past five years (with the occasional flare up whenever I inadvertantly eat them - it's amazing how many ready-prepared foods have tomato in them somewhere, for instance!)

    I hope you find out what's causing your problem, but I would urge you to consider cutting out those foods I mentioned for a while, just to see if that's the cause.  I have a couple of friends who had suffered in silence until I told of my problems, and they cut the offending foods from their diet, and they both also had complete cures.  

    Bests.  

    Minamii 

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  • Posted

    Oh, and I meant to add in my last post - you don't mention your age, but from what you've said, you sound to be quite young, say your 20's?  I'm now almost 60, and know from experience that the vulva does some really weird things in terms of structure, changes in appearance are not that uncommon as you get older.  I wouldn't worry too much about the extra fold of skin.  It could just be a result of the pain, the skin tends to thicken in a sort of callous to protect itself.  The extra folds I had developed have since sorted themselves out and disappeared, once I dropped potatoes and tomatoes from my diet.  

    Minamii

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    • Posted

      Hi kell.  Yes, sad to say I'm one of the individuals sensitive to the powerful plant glycoalkoloyd of Solanine.  This is the chemical that some plants, and particularly those of the Deadly NIghtshade family produce as a natural pesticide.  The Solanacea family includes, not only Deadly Nightshade aka Belladonna, it also has tomatoes, potatoes, chillis, bell peppers or capsicum, cayenne, and tobacco. Other foods I need to avoid, which also have significant amounts of solanine are apples, cherries, beetroot, okra and eggplant.  

      Most healthy human livers do a great job of detoxifying the solanine content of the above foods, and indeed mine was the same when I was younger.  However, as I've aged, my liver has become less efficient and instead of detoxifying all of it, solanine is free to circulate within my body, causing many of the classic signs of solanine poisoning.  Which the doctors over the years should have picked up, but didn't, instead mis-diagnosing me with a variety of other ailments.  

      Not only do I get horrible pain and itching of the skin whenever I ingest the foods I now know I'm sensitive to, I also get inflammatory responses throughout the entire body.  I get arthritic pain in all the joints, and extreme headaches.  My skin feels like ants are crawling over it.  I get nausea and diarrhea.  From a young age whenever I ate apples, the skin of my lips would tingle and the tissues of my mouth and throat would swell so badly that I would have difficulty breathing, the classic asthma symptom.  For me, an apple a day definitely does not keep the doctor away, it ends up with me in hospital on a ventilator!

      It's awful, so you can see that when I finally worked out what was going on, the relief was immense.  At my age of nearly 60, I'm healthier than I've ever been, simply due to cutting out solanine-containing foods from my diet.  There are so many other foods available that I don't miss the solanine ones (although I admit I do get a pang when I see my partner tucking into hot, greasy potato chips smothered in tomato sauce!) 

      Minamii

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  • Posted

    Like Gillian, I found my gynochologist to be useless. He said he couldn't cure me only help me manage the pain. Well. I didn't want to manage the pain, I wanted it gone! It was a dermatologist who was my saviour! Do see if you can find my post about curing my vulvodynia, if you can I can repost it here.

    By the way, I forgot to say that one of the causes of vulvodynia can be damage to the nerves deeper inside (rather than in the skin in that area), e.g. trapped pelvic nerve, and for such people physiotherapy, chiropractic and yoga can help to free up those nerves. This may be the case with you, considering your operation and the fact that the vulvodynia pain is on the same side.

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    • Posted

      Thanks for the replies everyone. I have to take time and go to things referenced here smile

      Honestly I'm allergic to so many environmental things that it's impossible for me to eat any produce without the possibility that it pollinated with something I'm allergic to. I'm also a vegetarian 🙄 I have switched to "free" laundry soap and body wash.

      The gynecologist I saw as I said specifically said I don't have this condition or any other and told me to take Tylenol. I said take Tylenol for the worst pain I've ever felt? Fantastic. She was just very bad. Here in Canada it's hard to find a gynecologist who is anything other than an obgyn. As someone who has a myriad of pelvic issues and no children, it's been unhelpful!

      I am about to turn 33. I did think if the possibility of it just being part of aging to have changes in appearance, but this doctor again was very unhelpful. Something strange is that the intense 24/7 pain stopped when the skin fold appeared. Now it comes and goes, and I would say seems worse when I'm stressed or poked at. I haven't had sex since the couple weeks of intense pain. Before this ever happened I can I realize now this side has always been more sensitive after intercourse, and it seemed the more I had it, it went away- like it got used to it.

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