Vulva Burning (no itching)

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So glad to find this forum!  My problems started a little over a year ago.  I had bought some new underwear and while I washed them before wearing them I guess I didn't wash out all the chemicals.  Immediately upon putting them on I felt a burning sensation on my vulva.  I immediately took them off and put on another (not new) pair, but the damage had been done.  After that I felt the burning pretty much all the time.  Internet research led me to thinking it was just contact dermatitis, so I tried EVERYTHING people suggested on the internet: loose pants, cotton underwear, bleach and formaldehyde free toilet paper, not using soap down there, Vaseline, etc.  NOTHING worked or even helped and some stuff made it worse.  Leaving it alone also didn't work though that seemed to be the best of everything I tried.  It also stayed really red down there all the time.  So I went to see my gyno and she gave me some steroid cream, but it didn't really help.  I went back to my gyno and she gave me a stronger steroid cream, but it seemed to make it worse.  Then I decided to go to a dermatologist that specializes in vulvar conditions.  She said she thought it was lichen sclerosis even though I never had any itching, only burning, and I don't have any white patches.  She said that she didn't think my problems were related to the underwear thing though that might have helped trigger the problem that was always kind of there.  She said to be sure she'd have to do a biopsy but I didn't really want to do that yet.  She gave me another stronger steroid cream, but it also made it worse.  She then told me to just use a zinc oxide cream down there but that also irritated it.  I then started looking for natural remedies.  I've been using a spray of witch hazel, a little vitamin E oil, a little castor oil, and lavender essential oil.  It seems to help keep the irritation at bay somewhat but while it's not getting worse it's not getting better either. 

My symptoms basically are burning, not all the time but some of the time, and I have this ring of skin around my inner vulva starting from the clitoris and going all the way down to the vagina.  The skin fluctuates between red/purple and red/pink but it's a different texture than the regular skin (you can feel it's like a ridge between the regular skin and the red skin).  I also developed this small extra "fold" of skin next to my clitoris that was not there before (maybe caused by thinning skin?). 

Anyone out there with similar symptoms and/or can recommend some treatment options from someone who is so super sensitive that they can't use steroid creams (or most any other type of creams or ointments)?

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13 Replies

  • Posted

    Hi Carrie. I'm sorry to hear you are going through this. The burning sensation, reddened and inflamed skin and the fact that you have had it for around a year leads me to suspect that you have vulvodynia, possibly triggered by chemical irritation. Or you may have had dermatitis which lead to vulvodynia. However, it would only be possible to tell properly if you have a biopsy. I am surprised that the dermatologist didn't suggest vulvodynia, but without a biopsy, she cannot properly diagnose. I am surprised you have lasted this long without getting a definitive diagnosis via biopsy and, therefore, targeted treatment. I had the same symptoms as you 4.5 years ago and after a couple of months I had a biopsy to rule out lichen sclerosis or something more serious and the biopsy showed only inflammation so I was diagnosed with vulvodynia. Like you, I couldn't tolerate any creams or gels on there - they only made it worse - except natural oils. I found pure, raw, organic, cold pressed, virgin coconut oil to be soothing. After around 2 years of determination and various concurrent treatments I was finally pain free. You can read my story in this vulval problems forum. I posted it around a month ago. If you can't find it, I can post it here for you again. I think if you click on my user name you can see what I have posted.

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    • Posted

      Thanks for your response!  When I went to the specialist she did the "cotton swab" test where she used a swab to touch various spots on my vulva and into my vagina to test for pain, but I didn't have any pain.  And it's never painful to the touch, just more of a generalized burning.  And vulvodynia also usually doesn't make your vulva look different, right?  Because mine definitely looks different.  I don't know a lot about vulvodynia but wouldn't the cotton swab test rule it out? 

      I will definitely check out your post, thanks!  I did try coconut oil (with all the specifications that you named) but while it didn't make it worse it didn't seem to help much either.  I also tried aloe, and that seemed to make me itchy.  I was thinking about trying hydrogen peroxide and saline mixture which I read about on here.  Any experience with that?

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    • Posted

      Hum ... yes, as vulvodynia is a nerve thing and the nerves have become hypersensitive and register touch as pain, one would expect the cotton bud test to work. Your problem must be a skin surface issue then. As steroid creams didn't work nor has leaving it alone worked and it has been a year perhaps you should seriously consider that biopsy. When I had mine they gave me a local anaesthetic so it didn't hurt and afterwards it was just a bit sore.

      DO NOT try any home remedies - hydrogen peroxide and saline! Ouch! That area is delicate and already irritated, you don't want to go putting harsh chemicals on there. I did that and I think that is what caused my vulvodynia. I was having repeated and persistent trush and in my despiration to get rid of it I tried home remedies such as adding bicarbonate of soda to my bath and cider vinegar. Those made me much worse and started off the vulvodynia. Bearing in mind you think that chemical irritation is what caused your problem and you cannot tolerate many products on there, don't go trying any more chemicals. I understand how you feel - you are so desperate that you will try anything just in case you find that one miracle cure. Please don't. I really regret trying home remedies - I was so angry with myself for causing the vulvodynia which caused me a year and a half of pain and misery.

      Have the biopsy, find out what it is and get targeted treatment.

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    • Posted

      Thank you for the tips.  I will definitely heed your advise and not try any more home remedies.  I know exactly what you mean...in the past with other ailments I've tried things in desperation and made the problem worse and then you regret it forever. 

      The reason I'm hesitant to get the biopsy is because the specialist isn't covered by my insurance so each visit costs me $300, and I think a biopsy will cost me over $1000.  I've looked for other specialists in my area that deal with vulvar issues but those too are not covered by my insurance.  So frustrating!  The interesting thing, though, is that my specialist does not think that the chemical thing actually caused the problem.  She called it a red herring.  She said she thought that it was either a coincidence or that the issue was already kind of there it just hadn't started showing symptoms yet and the chemical just kind of brought out the symptoms.  Who knows.  I feel like if it were a chemical irritation, though, it would've gone away by now. 

      What do you think about it being a hormone issue?  I've never had my hormones tested and I'm only 36 but I know hormone imbalances can cause issues.  I know that some people have used and had success with estrogen creams but my doctor didn't mention anything about that, probably due to my age.

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    • Posted

      I definitely do not want that.  That makes sense, though, when you think about how if you put it on a cut it foams and burns. 
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  • Posted

    I agree with Suki - mostlikelly vulvodynia.

    If it were Eczema - the steroids would have improved it. 

    If it were LS - you would expect some white patches by now.

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    • Posted

      As I said to Suki, my doctor tested me for vulvodynia with the cotton swab and I don't have any localized pain, but I agree about the patches.  It seems weird that I would be missing the #1 symptom of that disorder and still actually have it. 

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  • Posted

    I assume you have been tested for STIs and other infections like BV and thrush, just to rule those out? Sometimes trush makes me sore, swollen and red but there is no discharge. I have seem posts form other women suffering from a persistent problem like yours and they solve it by taking oral probiotics (there are some containing the good bacteria found in the vagina). There is also a blend of natural oils called vulval harmony by bloom khans which I find soothing and there is a spray containing essential oils cake salcura topida intimate spray. I suggest those things because they contain natural oils, no chemical nasties and didn't irritate me.

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    • Posted

      Yes I was tested for STDs and all came out negative, and I was tested twice for thrush, once by my gyno not long after the problem started, and then again by the specialist almost a year in.  Negative on both counts.  The odd thing is that when I try to take probiotics, I almost immediately start getting thrush symptoms (specifically burning around the vagina opening, and a different kind of burning than I feel with my condition).  I don't know what in the probiotics would be causing thrush but I tried two different probiotics and had the same result with both.

      Thanks for the tips on the oils and sprays.  I will look into those!

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  • Posted

    Are you in the US? I have has this conversation with others in these forums about hydrogen peroxide. Here in the UK it is bleach, used for cleaning and disinfecting surfaces, sinks, drains, kitchen cloths, etc. We don't use it on skin. I believe it can be used in a very diluted form to clean and disinfect wounds, but we tend to use rubbing alcohol for that. It is a skin irritant. 

    A female genitals are sensitive and delicate. Treat with care. No nasty chemicals.

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    • Posted

      Yes I'm in the U.S.  We have alcohol too but yes I agree that would be way too irritating.  Hydrogen peroxide is known to be milder than alcohol, but yes I agree with you that it is better not to keep trying a bunch of things that could really make the problem worse.

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  • Posted

    I'm not sure about your chemical irritation question. Like you say, if it had simply been due to that then one would have thought that would have cleared up sooner. I assume you have bought and worn new underwear before and it has not happened. It is probably too late now, but can you think of anything else going in in your life at the time? A new sexual partner, stress, etc. Do you swim? The chlorine in pools can be an irritant.

    How do you wash down there?

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