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just plain confused

Posted , 8 users are following.

lora101
lora101

i was recently told by my GYN that I have LS .. She acts as if its a hang nail ,no big deal use a little cream all will be fine  No worries about my sex life or possible complacations  So far medications have proven too strong.  Im not really sure what my next step is.  I guess from reading other post im somewhat lucky no itching but i do have a lot of burning and pressure sensativity. What kind of advice would you give me 

0 likes, 11 replies

11 Replies

  • joey20961
    joey20961 lora101

    Posted

    I hear you. Sex for me is very painful now and the steroid cream scares the &hit out of me due to thinning of skin. I understand you with saying these meds are too strong. I think maybe if you don't have itching just to take probiotics and apply coconut oil. I am trying to use the clobestol again only 2x a week, scared but it can put it into remission and 2x a week is not too much. we don't want our vaginas fusing or closing in. i have heard horror stories about that. really this is a scary disease
    • lora101
      lora101 joey20961

      Posted

      Thank you for your advice.  I wish I would have checked out my own antomy sooner I have no clue to where the changes are .  Im planning on trying some of the  ideas that people have given me and keeping a close watch for changes.  also i think I need to try and find a better doctor.
    • joey20961
      joey20961 lora101

      Posted

      no problem smile i really do think the clob may be beneficial if used the right way and the right amount. lots of people have downed it. i really am also trying to get this into remission. this site is great for alternative ideas and yes i would see another doctor i saw like 3 already..
  • Okpeeps
    Okpeeps lora101

    Posted

    Well I'm just back from first visit to gyn. He ( the consultant) says it looks like I'm in remission thank the Lord. His advice..... Steroid cream twice a week now for maintenance; no soaps or baby wipes to clean at all..... Ever !! Plain warm water on cotton wool pads to clean or if out and about pure coconut oil on cotton wool pads. Sex (? What's that ?) use plenty of water based lubricant with plenty of time. And finally.... Ladies..... It's official ..... Cut out sugar and stress !!!! Straight from a professional. Oh and where appropriate.... No underwear !! In Scotland ? In winter ? Have to say he stressed what we all know already.... Flare ups are highly likely but learning what triggers them is totally random for all us. So there we go. I shall continue to check into this forum as all you fellow suffers ( and myself) find new ideas and thoughts and tips to help us with this damn condition
    • lora101
      lora101 Okpeeps

      Posted

      Thank you for your advice I would bet sugar plays a big role for me  I have a really bad sweet tooth.I will also try and find a better doctor.
  • kathryn07219
    kathryn07219 lora101

    Posted

    Believe me - it's a big deal!  I thought I was doing well in comparison to others too.  It started with LS of the genitalia with patches on my back, then it crossed over to LP of the nails, then one breast developed a purple/red discoloration, then my appendix scar started to stand out in a white ridge with brown/red skin discoloration around it.  Yesterday I was told I had early signs of OLP and an associated auto-immune system skin disorder on my legs - granular something or other.  LS needs to be taken seriously as it may just be the start.  As I said to my dermatologist, I feel as though my body is slowly disintegrating.  Make sure you gynae/doctor takes it seriously!
    • lora101
      lora101 kathryn07219

      Posted

      Thanks for your advice. I feel so uninformed and uneducated about this whole thing.  So far Im just gathering as much information I can get, and hoping to be my own advocate 

       

  • Morrell1951
    Morrell1951 lora101

    Posted

    Could be you're being too generous, or you need to ask the pharmacist for the ointment version. There are extra ingredients that make cream white, etc. And some of us are sens itive to them.

    Doctors vary so widely on LS!

    • lora101
      lora101 Morrell1951

      Posted

      Thanks my doctor said I should use the ointment instead of the cream and I told her thats what I was using ( how wrote the RX) my doctor  

      Time to find a new doctor

  • andrea58721
    andrea58721 lora101

    Posted

    Hi Lora,

    I'd find a more sympathetic mainstream practitioner if possible, although unlikely in my experience. They can't solve your problem except to mask it, so they feel inadequate and go into denial by pretending your problem doesn't exist. They are the silver bullet crowd.

    Experiment with the meds. Bring ideas from this website about alternative meds and ask for prescriptions to try them out.

    There are lots of suggestions on here about diet and stress. The wrong diet is a stressor on your body, the same as emotional stress. Try to avoid both. Sugar is a stressor for most people here and flours of any kind go into your bloodstream like sugar. Nuts and seeds ground fine are not considered flour but whole foods, so they're ok as substitutes. Lots of recipes are online for alternative diets. Visit a good nutritionist and see what s/he has to say. Find out if you have any food sensitivities.

    It's not as hard as it sounds at first. Have faith in this community, and have faith that you can make things better!!  

    Andrea

    • lora101
      lora101 andrea58721

      Posted

      Thanks I think I am in the market for a different doctor. I hope to keep gathering information so I can be better informed when I find one.  Do you seen a GYN or a dermatologist
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