My weird LS Symptoms?

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About 5 years ago (excuse me for being graphic if I am but I can't think of ways to explain this and sound ladylike really). 

About 5 years ago after intercourse,  I felt pain on my vulva near the opening. When I looked there, there was like a blood blister that had popped?With black and purple around it. 

It turned to a sore white spot. Sometimes the spot would go in th early days, now it's there always. 

It's really sore. I was told by a few doctors and a gynea that it is LS. I didn't believe them at first. However one day whilst looking at myself down there, I saw the figure 8 whitening. Not severe. My clitoris is white on one side and has changed structure. Like loose skin around the one side (if that makes sense?). 

I tried clob a few times but it burned so much I gave up. (It;s the ointment as recommended). I'm told my LS is not severe? I have no itching. Just on occasion. It's more pain I feel. I have dryness and pain. I had a horrible appointment with  a female doctor who I think misunderstood me. I think she thought I wanted to be treated with vagfem? (hormones) but I was questioning the ointment burn and whether to continue as well as addressing the dryness with vagfem. Is vagfem okay to use? is vagfem dangerous? What should I do with the clob if it hurts so much. Is hurting normal at first. Any help appreciated. Thankyou. x

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14 Replies

  • Posted

    First use organic coconut oil for the dryness. All natural...no nasty chemicals or side effects.  I've had excellent results with witch hazel...without the alcohol...you can find it online and  100% aloe vera gel.  Put the witch hazel in a spray bottle and use it after each bathroom break, then apply a dab of aloe vera gel.  I mainly use the coconut oil at bedtime and after showers.  I've not had the whitening, or calousing or splitting since using this regime...now for over a year. Give it a try...nothing to lose...and hopefully much relief to be gained.

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    • Posted

      Hi. The same thing happened to me. I had a punch biopsy done. LS was not confirmed back then. 20 years ago but later in a second biopsy. I also had soreness and white labia which later spread to anus and groin creases. I use Clob ointment as well. But have learned that only a tiny speck is necessary and that it has to be massaged into the area until it almost disappears. But....What is even better is a sitz bath in either bicarbonate of soda or a little Borax. I have used Vagifem too. Recommended by my gynecologist. It didn't make me sore but since I am unable to have intercourse I really don't need it. I use Zincfax baby barrier cream on my creases. It works. Coconut oil is great if you aren't going anywhere but it's very greasy. Hope I have been of some help. No worries about being open with us. We are all in the same situation. Good luck.

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    • Posted

      Gosh that really has helped, just a tiny speck?? Perhaps I was using too much. I am quite excited now, it might just work that way for me. x
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    • Posted

      Yes one pes sized dab. I used too much too and got really sore. It wasn't explained to me by my doctor. Vi had to learn it on here.

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    • Posted

      I found aloe Vera gel to be too strong to put on straight. Start with it slowly and make sure you tolerate it. We are all different.

      Emu oil is very gentle and moisturizing.

      Many have great success with coconut oil but it makes me itchy.

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    • Posted

      You must not use the witch hazel that has alcohol in it.  You can purchase it online without...and the aloe vera gel must be 100% aloe vera gel...no alcohol.  Otherwise it will burn.  The coconut oil should be organic. It melts at body temperature...so will melt as you apply it.  There is a comment that coconut oil causes itching...if you are allergic yes it will. Also, long term use may cause this, so I take a break from it once in awhile...or just use it every 2nd or 3rd day if I find this happening.
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    • Posted

      As viv says...yes, 100% cotton underwear are a must.  Also, she mentioned the non-soap use.  Soap is drying...so it seems to make things worse. There are several good products out there.
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  • Posted

    Hello Callianne and don't worry about being graphic, I think it helps all of us to be more open and honest about our experiences. I just want to say that you are not alone in your symptoms or finding what works for you. But to be told your condition is not severe although comforting is not helpful. I am not wishing to alarm but I know from experience not to underestimate it or become complacent. Always keep an eye for changes. The absence of any symptoms such as itching does not mean that it is not active. Just easily tearing skin is significant. I did not get on with Vagfem but have just started using Coconut oil. As Octopus points out though, it is greasy and this requires consideration depending upon life style. I use it at night only. My Dermatology Nurse prescribed White soft Parafin which works brilliantly but I am concerned about long term use. Clob did not suit me and I have an alternative steroid. But all should be used sparingly. 

    Good luck.

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  • Posted

    I would definitely use the clobetasol ointment, but you only need the tiniest amount--a little goes a long way.  I've been using it for awhile now and it doesn't irritate me at all, but I do remember it burning when I first started so I think that's not unusual.  Spread a pea-sized amount very thinly on the area, preferably after a warm bath as this helps it to spread well and soak in easily.  It really does work to restore comfort and structure and after awhile you only need it occasionally for maintenance.  In between using the ointment, I would definitely use warm sitz baths and either petroleum jelly or some kind of oil, such as coconut or emu, both of which have been very helpful for many people on this forum.  I personally didn't have a lot of success with coconut oil, but emu oil works well for me as long as I don't overdo it.  I now try to alternate it with plain petroleum jelly, which for me just creates a barrier during the day against moisture from discharge, which irritates my LS significantly.  I have some vagifem that was given to me by a doctor, but I've never used it because I find that I don't really need it if I use these other methods.  

    Also, make sure you always wear 100% cotton underpants, and don't use anything in that area that is perfumed (tampons, pantiliners, etc.).  Use a very gentle emollient in the shower--never soap.  Don't wear underpants to bed--in fact I like to wear a nightgown with nothing under it and it allows me to "air out" overnight.

    Good luck!

     

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  • Posted

    My suggestion:  Perhaps read the topic "An Experiment with Borax"  on this forum to learn about a possible alternative to Clobetasol.  Especially because of your skin's reaction to the use of Clob. 

    ?Learn as much as possible from these threads.

    Against dryness I use coconut oil or emu oil. 

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  • Posted

    Vagifem will treat dryness due to atrophic vaginitis, which is something separate from lichen sclerosus, but something that affects many women who are post menopausal. No amount of moisturizer (coconut or emu oil) will reverse dryness due to lack of estrogen. Pain is also a symptom of atrophic vaginitis so prescribing hormones could very well be inline with the problems you raised with the doctor. I have both atrophic vaginitis and lichen sclerosus. I have different types of pain with each if not treated. 

    If you are using  steroid for lichen sclerosus it is important to use a moisturizer. 

    Blood blister like skin can be a symptom of lichen sclerosus. My blood blister areas don't turn white afterwards. It is important to be clear if the skin is turning white, or appears lighter in contrast to other skin that is red and aggravated.  

    You may need to try a different steroid from clobetasol. There are ingredients in the cream or ointment that some people are sensitive or allergic to and have reported things are better when they switch ointments or creams. 

    If you don't like one doctor, go to another. Sometimes they are like hair stylists and we need to do some shopping to get a good fit.  

     

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  • Posted

    HI, I have the white line on one side of my clitoris, and white patches which then turn into open sores, waiting to see my gyno at the end of may, which she said she would probaly do a biopsy, i think i  have had this for a few years, i am nearly 60, think doctors have mistook it for thrush. x
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