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  1. #1
    ICN Member
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    Exclamation Vulva skin problem - please help

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    Hi Everyone my name is Marsha and I was diagnosed with the IC 5 years ago. Since then I've been having problems with my vulva and perineum skin. It is inflammed (hype-inflammed during a flare) itchy and burning. I saw a few doctors and infections such as bacterial and fungal were ruled out. I also had 2 biopsies but apart from inflammation the resuls were fine. I tried a few steroid creams but no success so far they only made things worse. I also tried creams for nappy rash which didn't work either. I try to keep my skin dry, use organic cotton panty liners, etc. Sex is obvisouly very painful and even visits to a gynecologyst (My skin is usually cracked and bleeds a bit after any gentle stretching or rubbing). I'm currently going through a bad flare and got to a point now when I'm losing my hope that it will ever get better I've 2 children 5-year old daughter and 5-months old son. I'm breastfeeding my son and find really hard to cope with both my bladder problem and my very painful vulva skin. I would appreciate any advice from people who had similar problems: have you found a medication that helps your skin condition? Can you recommend any products you use to wash the intimate parts of your body? etc.

  2. #2
    ICN Staff ICNDonna's Avatar
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    Re: Vulva skin problem - please help

    Quote Originally Posted by Marshaa View Post
    Hi Everyone my name is Marsha and I was diagnosed with the IC 5 years ago. Since then I've been having problems with my vulva and perineum skin. It is inflammed (hype-inflammed during a flare) itchy and burning. I saw a few doctors and infections such as bacterial and fungal were ruled out. I also had 2 biopsies but apart from inflammation the resuls were fine. I tried a few steroid creams but no success so far they only made things worse. I also tried creams for nappy rash which didn't work either. I try to keep my skin dry, use organic cotton panty liners, etc. Sex is obvisouly very painful and even visits to a gynecologyst (My skin is usually cracked and bleeds a bit after any gentle stretching or rubbing). I'm currently going through a bad flare and got to a point now when I'm losing my hope that it will ever get better I've 2 children 5-year old daughter and 5-months old son. I'm breastfeeding my son and find really hard to cope with both my bladder problem and my very painful vulva skin. I would appreciate any advice from people who had similar problems: have you found a medication that helps your skin condition? Can you recommend any products you use to wash the intimate parts of your body? etc.
    Have you tried any of the surface analgesics? Those might help with the pain --- the ones I immediately think of are Lidocaine and Marcaine. There are also products that are made for painful hemorrhoids that might help.


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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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  3. #3
    ICN Member
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    Oct 2016
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    Re: Vulva skin problem - please help

    My Dr gave me a sample of Premarin Cream ...{you are breast feeding check with your Dr** I am to use very little around urethra and irritated skin. Since i go alot and use industrial toilet paper i get sensitive and bleed a little. It helps alot. it has cetyl esters wax, cetyl alcohol, white wax, glyceryl momostearate, methyl stearate, benzyl alcohol, sodium lauryl sulfate, glycerin, and mimeral oil. I drink Ozarka water. I find sea ingrediants agrivate my dry skin. Watch for carrageenan in foods and milk. I am dealing with solvents at work now making me go to the bathroom alot. Dr is testing my histamines to see why I cant process this out of my body. when I go outside I am fine.
    this is just a little of what I am going through .....please check with your Dr if you try this......

  4. #4
    ICN Member
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    Re: Vulva skin problem - please help

    From the Pelvicpainrehab.com site 2 recommendations were Aquaphor and Honest Kids Organic Healing Balm. You could try coconut oil too-that's what my pelvic floor PT uses for lubrication for "internal" work- it wasn't messy. And in one of the pelvicpainrehab.com blog postings they recommended using only water to clean your vulva. No soaps of any kind.This may take some experimentation. And I presume that as long as you are breast feeding that you estrogen will be low,which probably doesn't help matters. Good luck-sounds kind of miserable!

  5. #5
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    Re: Vulva skin problem - please help

    Thank you Donna I'll try it. I've an appointment next month with a dermatologist (although I saw a few in the past and they all just prescribe me steroid creams which don't help at all). I need to find a doctor who is a bit more passionate and has got a more holistic view on those things! Thanks!

  6. #6
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    Re: Vulva skin problem - please help

    Thanks #pennyjosh unfortunately all creams with alcohol make things worse I'm hypersensitive but good to know you found a cream that helps you! I'll keep searching until I will find something...

  7. #7
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    Re: Vulva skin problem - please help

    Thanks #icshorty I tried organic coconut oil for a couple months but unforntunately it didn't help. Will google the other 2 products you mentioned in your post. Thank you!

  8. #8
    ICN Member cindydi's Avatar
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    Re: Vulva skin problem - please help

    I too had the cracking and bleeding skin. I had steroid injections which helped the skin heal. I was also put on clobestol steroid twice a day for a month and then once a day for a month and then switched to a less potent steroid, Betamthasone which I use 2-3 times per week. It seems to control but not cure the flares. Skin is now normal.
    I react to steroid crimes I can only handle ointments that have 1-2 ingrdients. Hope u find ur answers.
    William Ellery Channing:
    Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict.

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