Vulva Burning- Drs at a loss. Help!!

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For 7 months I've had constant vulval burning and soreness. At first thought it was UTI or thrush, was treated for both with no improvement. GP said it looked like eczema around urethra/vestibule and prescribed betnovate as general HC cream hadn't worked. Seemed to have a bad reaction to steroid cream (stretch marks, extreme thinning of skin, swelling so bad a small tampon wouldn't fit, more severe burning + redness)so went to GUM clinic. They prescribed nizoral for potential seb derm and then lidocaine gel which numbed me for about 10 minutes then made the burning worse. After this I was referred to a gynae consultant. She said it looked like a typical eczema case and confirmed a reaction to steroid cream so prescribed estriol to use every night for 2 weeks to thicken the skin. Result: MORE BURNING AND SWELLING after about 5 days so I had to stop use. Seem to have had the same reaction to the cream as steroid cream?? I've been tested for food allergies which have come back clear, all STI and thrush/BV tests have repeatedly come back clear. Saw the GP today who refused to prescribe me oestrogen in any other form as that would be HRT and I'm only 23. I have been washing my hair over the bath for months, washing with Dermol, sleeping without underwear and wearing loose fitting clothing since it started but can't find a trigger. It's driving me insane I can't even sit at work!! The drs are at a loss as to what could be causing it and what would help without a biopsy which they won't do. Vulvodynia was mentioned but the consultant dismissed it after examination since she thought it looked like typical vulval eczema. I am sexually active but don't see my boyfriend that often and there is no correlation between when we have sex and the burning. I've tried condoms, no condoms, latex condoms and latex free condoms so ruling them out. Just to add, the burning subsides during my period and then starts up again after but drs have dismissed this since the pill hasn't helped it!! 

Any suggestions would be great because it's driving me insane!

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9 Replies

  • Posted

    Sounds like vulvodynia from too much lactic acid build up from your pelvic muscles.
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    • Posted

      Thanks for the reply!

      I did wonder if it was pelvic floor related when I couldn't have sex/use a tampon but GUM clinic said the swelling was just as a result of inflamed dermis. Will mention this to the consultant. In the meantime is there anything I can do for it if it is? 

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  • Posted

    Im still working on mine since I was just diagnosed a week ago. Ive been doing accupuncture and I start physical therapy next month. I have been dealing with this since January of this year. I had to travel to a different city to see a vulval specialist, as the OB doctors here just kept telling me to take a probiotic and prescribed 2 different steroid creams, lidocaine, estradiol and anti fungal cream that all just made me worse and flare up. It literally feels like acid is dripping inside. The specialist total me my pelvic floor muscles are overactive and they produce lactic acid and that is the boring that I am feeling. I did do a baking soda sits bath and that helped calm it a little. I did not want to do it too much because I don't want to change my flora. I did stop my probiotic because I read that the lactobacillus acidophilus probiotic produces lactic acid and peroxide which is counter productive of what I want. I went on line and am also trying some breathing exercises to relax pelvic floor muscles. I had a hysterectomy August 2017 and the pelvic floor muscle thing makes way more sense to me than anything else the other doctors have told me. 

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  • Posted

    Also the reason why the buying subsides during your period is because your blood has a higher ph so it rise the ph in your vagina and that is soothing for the time being. thats why the baking soda helps
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  • Posted

    Sounds like vulvodynia to me. When I had it, like you, steroid cream and lidocaine made it worse. In fact all products on there made it worse so I decided to stop all medication and just use natural oils. Coconut oil was soothing. After a while I did try saginil gel which made the pain more bearable. I did a lot more and it took me two years to be pain free. You need to see my post “how I cured my vulvodynia”. Other women have put their success stories on there too.
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    • Posted

      Around the vestibule and vaginal opening is slightly erythemous, though this doesn't seem to be a measure of pain i.e I can look not inflamed at all but have much more severe pain than the more erythemous days. I thought normal skin was characteristic of vulvodynia? 

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  • Posted

    Sorry you are going through so much - I have Vulvar Lichen Planus which a gynecologist diagnosed right away when she got the results of a biopsy she performed at her office. Sounds to me that a biopsy is in order. 
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  • Posted

    Hi, Sounds just like me. Thought I had UTI’s but when burning wouldn’t stop I went to gyny who said it is Lichen Planus and put me on a steroid cream Lotrin with a numbing gel to put on also. Well, after 5 days it was even worse and I was crying with the burning. So called her and said I thought the cream was making it worse, so was put on Dermovate and things are settling, apparently the first cream contained canesten which was actually making it worse, honestly I am mad at the Dr for putting me on that awful cream. I feel I have lost a week of getting better. I am also taking 3 times a week Vagifem and hope this helps. Not entirely better yet but going that way. Hope you can find something that helps.
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