1. Community
  2. Women's health
  3. Lichen Sclerosus

LS

Posted , 9 users are following.

lori123159
lori123159

IS THERE ANYONE I CAN TALK TOO

0 likes, 16 replies

16 Replies

Next
  • justine89448
    justine89448 lori123159

    Posted

    We are all here are you struggling dealing with ls
    • lori123159
      lori123159 justine89448

      Posted

      eit worshe one i just beleive it.i wonder whathelps?the steroid i' not helped onyed in fora week 5 years ago.I am in tears,i can't wash,wipe it hurts exrely bad.what do youow about this.
  • suedm
    suedm lori123159

    Posted

    Ring the clinic you attend on the day you have your appointment ask to be put thro to the senior nurse, she should be able to put you in touch with a fellow LS er who might be willing to talk. There is also a national LS organisation where there have been support groups in the past.. Check on line for this outfit. 

    Pecker up we all go thro very difficult times and we can get thro them eventually, sadly it can take time.

    Do post your anxieties here ..you can do so privately by clicking on the envelope to one of the contributors and may be they could help " talk" you thro the issue that you want to talk about 

    Good luck and take care 

  • Guppy007
    Guppy007 lori123159

    Posted

    Yes, you can talk to us.  We don't hold back on here, we talk about LS in great detail on this site, otherwise what would be the point...you can PM me if you want to, no problem, but really, everything is discussed openly here, and you will get a lot of feedback from lots of women with the exact same issues. 

    As mentioned, there may be a support group that you could join near where you live...Sometimes it is hard to believe such a hideous disease exists, but I can promise you, things do get better once you have things under control.. 

    • lori123159
      lori123159 Guppy007

      Posted

      I Have had it for about 5 years now.i have it extramly bad.i was given that steroid cream but that was 5 years ago.i know i will never be able to have sex again.Iam already a deppressed person but this really bums me out.i can barely wipe right now,figure i need to go see the doc again.oh i'm 55 years old by the way.It itches alot of times,this is so frustrating.what is a real bummer i even have herpie break outs 1 to 3 years or so.what can i do for this,i have heard of emu oil.what do you suggest.and will i never be able to have sex again last time was 2 years ago and it so badly burns after,so much afraid.well don't have a sex partner anyway.i just hate the pain.i have had it bother be the worst as we speak.it hurts to wash or touch at present time.i have a cut type between front and back i'm sure thats what is burning.dear God do you have any answers.doctors really don't know much about this.I beleive i have it because of my under active thyroid.damm thyroid. please help me if you know what can help.thank you so much
  • Guppy007
    Guppy007 lori123159

    Posted

    Lori, sometimes the moderator on this site deletes posts if they contain links regarding products, or sometimes they are automatically removed because its a glitch in the system...just so you know! as I noticed you have had a post removed!!  

    Firstly let me just say that if you scroll up to the top of this page and click on "Lichen Sclerosus" this will bring up all the recent posts from other women and you can then spend some time reading through them, its very helpful!

    The best advice I can give you is to find a doctor that understands Lichen Sclerosus, your best bet is a Vulva Clinic, as you are correct, many doctors are not that well informed with regard to Lichen Sclerosus, and it sounds like your in a lot of pain and discomfort.  You mention Herpes, are you aware that one of the symptoms of LS is small open sores that many doctors often diagnosis as Herpes, but can actually be Lichen Sclerosus, so you probably do not have herpes!.... this is why its soo important to find a good doctor  quickly.  

    To help with the pain right now, run a bath and put plenty of salt in it, do this  twice a day, remembering to dry your Vjay carefully, then apply the steroid cream you have been given, remember to  rub it in well, after about an hour you can then apply something to lubricate your Vjay, I use coconut oil some days and Emu oil on other days, but don't over use it, less is more!.

     

    Please read the posts from other women, it will help, and make sure you make an appointment today with a doctor, and let us know how you are getting on as this is a frightful disease and can easily make you feel depressed.   Sex is possible, but you have to get this nasty flare up under control first.

    One last thing...cut out all sugars for now, many women have found just by doing that one single thing they have started to feel much better, as Lichen Sclerosus LOVES sugar!!

     

    • lori123159
      lori123159 Guppy007

      Posted

      wow!!! i guess i will work on trying to cut out sugar.sounds almost like cancer,cause cancer loves sugar too i hear.are you sure about baths?not putting salt in water that would hurt i would think.so am i going to be in this pain for a long time?how and where did someone find that sugar is a no no for this stupid ls.sounds like you know alot.i am so depressed about this,i hope it sometime will get better.so you can have sores?well the doctor saw it i guess,she said it wasnt a herpies outbreak,this l s may give me a outbreak then i would be double screwed.this is worse then herpies ever could be.i have such bad luck.ugh!!!!!!i guess i will keep using the clob but dang it sure stings.what happends if this goes on for a couple more weeks?i just am stupid with this,i am just learning all from you
    • Guppy007
      Guppy007 lori123159

      Posted

      I understand your concern regarding salt water, but salt water does help, and while it may sting at first,  it should ultimately help with the healing.  Many women often report that after swimming in the ocean their Vjay feels better. 

       After bathing, I would try to dry the area without touching it,  and that is when a hairdryer can be useful instead of a towel.

  • sandra01720
    sandra01720 lori123159

    Posted

    Just to let you know I care. There are hard days with LS for me but find some soothing things to do and apply and it can go a long way.

    I find baths so soothing emotionally and throw some sea salt or baking soda into the water and it should bring you some relief for the LS.

    I still can hardly believe I have this nasty disease. I'm 44 and have had it for many years I believe, tho I was only diagnosed in June. you are not alone. Hang in there!

    • lynne1945
      lynne1945 lori123159

      Posted

      Have an open mind Lori. People are trying to help you here. If you have been suffering for five years I am surprised you haven't picked up many tips for soothing the area. I have only been on this site for three months and this is my first flare since diagnosis. I have got so much help from here and you will too if you just stop and read and absorb the info, and start coming down from your melt down. Of course salt isn't poured into an open wound, but diluted with water in a bath. It's the oldest remedy for healing a wound there is. Swimming in the sea etc. Salt. It's great. Try half a cup in a shallow bath to sit your undercarriage in, and do it twice a day. Stay in for a while and swish it around. I use baking soda the same way. And wash after peeing with a spray bottle or whatever. I use a nasal cleanse bottle which shoots the baking soda up into the region and gives it a good clean. 

      Its not fun to be us, but the reason we are all here is to help each other and if something doesn't seem right for you on one post then there are lots of other posts here with different tips. confused

    • lori123159
      lori123159 lynne1945

      Posted

      I will have to get a spray bottle to have on hand.but seriosly i can put baking soda in the bath,ok i will try that.the clob stuff is no good to strong,it has made my sore worse and got a rash on both sides of my inner legs from it.i am not using that anymore.my doctor said she will get me some linocane for my pain.and appointment with a gynocoligist,this is just totally getting out of hand.this is the 3rd time in 5 years i have had this happend.but this is so so bad.thank you for your help.i'm glad there are people to talk with
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.