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still in pain

Posted , 8 users are following.

arlee
arlee

My urogyno told me in October I had LS because of change in architecture 

She prescribed clobetasol and I used it twice daily for 5,weeks. I saw her again in November and she told me to use Clob once daily and zinc cream for barrier. She changed my hormone cream as well. I’m seeing her this Wednesday and not feeling very confident  she never did a biopsy. I’m reading that many ladies here had one. I still have burning and pain and sometimes itchiness. My anal area burns as well. I don’t have white patches. This whole situation has me feeling very down because I can’t see myself ever improving. 

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  • elle2424
    elle2424 arlee

    Posted

    Hey. i found out I had LS in November. I also don't have white patches but still sometimes get pain and itching. I also never got a biopsy. I'm seeing my doctor again next week and I have so many questions. I've learned way more on this forum than from her. 

    This is just to let you know you're not alone. From what I've read many women here have shared lots of different solutions and options... so there's lots of hope! I hope you start to feel better soon. 

    • arlee
      arlee elle2424

      Posted

      Elle. What made your dr suspect you have LS?  I’m still using clob once daily  still have burning and pain and sometimes itchiness. It’s only quiet when I sleep!  This is going on since October. On wed I’m going with a list of questions (again). This is the third time. I just can’t see an end to this misery. I do all my usual daily activities and I volunteer but it’s not in comfort that’s for sure 
    • arlee
      arlee elle2424

      Posted

      PS. I’ve also learned more from this his forum than my doctor. I’m also researching - probably too much on google 
  • elle2424
    elle2424 arlee

    Posted

    URGH. id written you a huge reply and it got deleted. 

    My doctor suspected when I said the fissures and itching were interfering with my sex life. 

    She didn't really educated me about LS. And I was devastated when I did my own research at home. 

    Now I'm focusing on tracking my symptoms in my bullet journal and trying the stuff people have recommended. I now take vitamins and omegas 3s. I switched underwear. Trying to cut back on sugar and dairy. Haven't yet tried the baking soda soaks or vaginal dilators, but will try soon. 

    • elle2424
      elle2424

      Posted

      My biggest question is does the clob prevent fusing? Or is my architecture still changing even if the clob is managing the symptoms like itching and cuts/fissures? 

      I felt so alone and devastated when I found out my diagnosis. Like I was a wreck. But don't despair!! There are so many things you can try to make it more manageable! And you are not alone. 

    • arlee
      arlee elle2424

      Posted

      I’m with you Elle my doctor didn’t educate me either. Said you have a skin disease - Lichen Sclerosus  here’s a prescription for clobetasol. I was a wreck like you.  I’m not sure if it prevents fusing. I’ll ask this week. It’s strange for me - I’m 70 and been menopausal since I’m 50. Never had major problems before. Since this diagnosis I’m always checking myself or I’m on the computer. Not good! 
  • Guppy007
    Guppy007 arlee

    Posted

    With regard to your concern regarding a biopsy.  All this means is that your doctor knows more about LS than most.  Many women go through having biopsys simply because their doctor is clueless and doesnt know enough about LS ,and so they send you off for a biospy..terrible really. 

    A doctor that is familiar with LS can give you a visual diagnosis of LS straight away.  That, and the list of symptoms that most of us have should make it a pretty straightforward diagnosis.

    The Clob will clear up the white patches but its diet that needs to be changed for some women. I am gluten free which helps.  You could try going GF for a month and see if it makes a difference.  But really, the biggest problem i think is the amount of sugar we all eat, that causes 'off the scale' itching.  I know its hard to believe that diet is responsible but it often is. 

    You have to do some work to figure out what is causing your ongoing itching and burning.  It wont go away with just the cream.

    • sandra52875
      sandra52875 Guppy007

      Posted

      Hi Guppy, you are so right about sugar.  Number one, yeast loves sugar.  Like you I have cut out sugar (a lot of startches as well) and eat loads and loads of plain yogurt.  My local Gynocolgist seemed very knowledgeable about LS and told me she also had the disease.  I ask her about sugar and she said it had nothing to do with LS, but I really disagree.  Sugars alter our digestive system causing yeast infections and other disgestive problems.  Because sugars are in so many products, I take a prebiotic and a probiotic and as mentioned, eat Plain Yogurt twice a day and plenty of it.  Ginger tea also kills yeast.  I try to drink a cup of ginger root tea every day.  Antibiotics mess up our digestive system as well and once again can cause a yeast infections that play havoc on LS.  

      This site gives us all hope!!!!  Thanks for you input

    • Guppy007
      Guppy007 sandra52875

      Posted

      Heres the thing....just my theory....by the time your Vjay is constantly itching you are 'overloaded' with sugar, not just with sweet stuff, remember carbohydrates turn to sugar.  If you can cut out all sugars for a few weeks you will notice as your body appreciates the difference.  Then, you can have the occasional sweet stuff/glass of wine.  But when your body is in crisis (itching) you need to listen and stop the sugar to help it to recover.  Also, I think I mentioned before a D........N tablet helps, (over the counter thrush tablet)

    • debi14820
      debi14820 sandra52875

      Posted

      Sandra, thank you for the anti sugar advice here. I didn't know it had a direct link to yeast infections. Thank you! Debi14820.

  • Guppy007
    Guppy007 arlee

    Posted

    Sorry I meant to say.  Sometimes LS itching is linked to low level thrush (without obvious symptoms) so if you take an over the counter thrush tablet that sometimes stops the itching.  They are called D.........N  Had to write it like that as we are not supposed to recommend stuff.
    • arlee
      arlee Guppy007

      Posted

      My problem is that I love sugar many ladies have talked about going off sugar among other things. I will need to do the same. Hard as it may be! 

      My dr saw that my architecture is changing. No white patches I certainly don’t want a biopsy on skin that’s already tender 

    • Guppy007
      Guppy007 arlee

      Posted

      You dont need to cut out sugar forever....but you do need to stop the sugar intake now to give your body time to recover.  Once you have stopped the sugar you wont want it as much anways and you can have the odd treat.
  • debi14820
    debi14820 arlee

    Posted

    Dear Arlee. When I was first diagnosed with LS, I was very depressed. It DOES get better. I have no white patches right now at all! I used my Clobetasol twice a day for 2 weeks during breakout of LS; now I use it only twice a week. Try using either Recticare OR Emuaid on the places it hurts. Do not get Recticare near your vagina. Only on labia! Recticare has lidocaine in it which Burns if you get it inside you. I buy Emuaid online. If your doctor didn't do a biopsy, it maybe that your architecture was the very obvious sign. If you're concerned, ask for a second opinion. Or ask for a biopsy to "set your mind at rest". Take care!

    • arlee
      arlee debi14820

      Posted

      Hi Debi. I agree it’s very depressing - not only that it’s LS but the discomfort is horrible I don’t have white patches - burning pain and sometimes itching. I’m still using clob everyday - I’ll see what my dr says about that on wed. I’m reading that many ladies here use emuaid. Which one do you use? I notice there are different kinds. I’m very sensitive to creams etc but I see there’s no alcohol in it (I thought there was). Do you order it from the company that makes it? They were saying not to order from other sellers because it may not be the “real” thing. It’s quite expensive but if it helps that’s all that matters 

      Not a day goes by that I don’t check to see if any parts have disappeared. Never did I think I’d be doing that

    • debi14820
      debi14820 arlee

      Posted

      Hi Arlee, I buy my Emuaid directly from them. You can also get it on Amazon, but it's the same price. I only buy the First Aid cream. The other stuff burned on me. Maybe I'm too sensitive. Yes I too check every day to check my parts. smile. I was told that once your episodes die back to keep using the Clobetasol twice a week. Forever. to keep it away. Mine has been gone now for 1 year. Knock on wood! (Joke). I hope this helps. Take care!! Debi

    • arlee
      arlee debi14820

      Posted

      Thanks Debi. I’m very sensitive to most everything 
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