I have had LS for over 3 years.f

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I have had LS for over 3 years diagnosed by biopsy.  I have been using Clobetasol twice a week except for the 1st 12 weeks which was every night.  I had it completely under control until the past 2 months,  I underwent 2 surgeries and a hospital stay which required lots of antibiotics.  Even though I took diflucan, I still got a yeast infection that was misdiagnosed as a flare up of LS.  I am now really suffering,  Can’t wear underwear because of the pain.  I am going crazy because I never know if it is yeast or LS as I don’t get that familiar white discharge.  I never know if I should use the topical yeast medication or the Clobbetasol.   Has anyone ever used both together?  I do have itching which is relieved by topical yeast medication. I also use coconut oil.  This is the worst flare up I have had.  Thank you.  I am new to the discussion

Sandra

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  • Posted

    I see a vulva dermatologist. She actually specialises in vulvar skin conditions
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    • Posted

      And nilstat is over the counter.  And yes, I use the clob and nilstat together. You get an applicator so you can use it internally and then I put it on externally because I’ve had external thrush and it was awful. I’m pretty sure that’s what’s caused this new flare up.
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    • Posted

      Yes, me too Isabelle. I asked my GP to send me to a Dermatologist rather than a Gynae. The lady consultant I saw for my initial appointment is a specialist in vulval conditions, and very knowledgeable, and she does vulval surgery relating to LS fusing, which I have, but has improved since using all my treatments 2 months ago, including borax. Obviously all specialists have their area of expertise. Some dermatologists cover vulval conditions, as do some gynaes, but not all have an interest in this area of medicine.
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    • Posted

      Isabelle do you mix nilstat and clin together or use it separately?   I really believe it is thrush ( itching and burning).  I also have pain from the LS.   Would you tell me exactly how you use  these medications I would deeply appreciate it.   Challenging last few months with recurrence of breast cancer and flare up of LS.  THANK YOU so much for everyone’s help
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    • Posted

      Aww bless you Hun, things can get so difficult to live with. Like a lot of us, those hormones drop, and we seem to be open to all sorts :-( I was already going through the menopause last year when pre-cancer was found in my womb lining, had to have a total abdominal hysterectomy, then LS reared it's ugly head a few months ago, now looks like I may be prolapsing inside, waiting for pelvic physio appointment for exact diagnosis. I've always looked after myself, including pelvic floor exercises etc, but lately I'm just falling apart. Sending hugs 🤗 x

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    • Posted

      Oh Maggie I do understand.  I am so sorry you are going through all this.  I had a total hysterectomy at an early age due to Endometriosis and then breast cancer,  A few months ago breast cancer again with no chance for reconstruction because the radiation treatments from the 1st BC destroyed my muscle and now suffering from LS once again.  I am on anti hormone cancer treatment drugs which eliminate all estregon in the body.  Of course LS will be worse without estregon.   I am glad I have my faith to carry me through.  Please let me know how you are doing.  Women like us on this site need one another.  Most people have not ever heard of LS.  Hugs
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    • Posted

      I wish you the best. That sound so awful. I've gone to a Gluten free, sigar free mostly all organic diet. I'm only on day 3. I was hoping to do mostly natural, bit not opposed to the cream if it prevents disfigurement.

      This may be too personal but I'm curious about the extent of disfigurement. The pictures online are horrid. Is that what happens to most people?

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    • Posted

      So glad you are seeing a specialist. Sounds like you are in very good hands   I have seen 3 different Gynicologist due to an out of state move.  Each doctor had a different take on treatment.  As I mentioned before I now have an appointment to see a Vulvar specialist.  For me, this is the way to go.   The disease is complicated and complex.  
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    • Posted

      Oh my you poor women you’ve been through so much!!! You sound like a fighter.  Goodfor you!! I’m trying to be strong but this is just one more thing to be stressed about! I guess in time if we get a handle on the LS other things hopefully fall into place 
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    • Posted

      Hi Hun, thanks for your kind words. Please don't despair about the images you've seen online. As someone pointed out before, they would highlight the worst cases, possibly untreated for a long time. I've had good improvement in the 2 months since being diagnosed, but it's all been very upsetting for me too. I'm on maintenance doses now, and don't know what the future holds. I had white skin and fusing around the perineum/fourchette area, which has improved, but may still require surgery, it was splitting a bit during sex, but not tried lately, I don't have a regular partner. Then I have my internal issues, as I said :-( Btw, the steroid is important to knock out the immune response and oestrogen to heal. I use both, on a maintenance dose now. Also borax solutions and oils are important too. Best Wishes x

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  • Posted

    So I apply the clob. Wait 30 minutes and then I apply the nilstat on top and then a barrier cream. I use emulsifying  ointment which you can get from chemists, they use it to mix ointments and it’s soo soothing and is the best barrier ointment I’ve used. You can apply it before you shower as well so the water doesn’t dry your skin out. I do this twice a day right now because I’m having a flare.
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    • Posted

      Isabelle I have a question; does the topicals applied after clobetasol interfere with the effectiveness of clob making it a weaker application?  Are you applying Clob 3 times a week?  One Gynocolgist said to use Vaseline or coconut oil for a barrier.  Sounds like your method works for you.  I was concerned about using Vaseline worried bacteria would get trapped under it.  
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  • Posted

    I’m currently using clob twice a day because I’ve flared all over my vulva, initially I only had it near my clitoris. Waiting 30 minutes has been working fine, I have to use the nilstat otherwise I come up in a bumpy rash which is thrush. I also get psoriasis so I need the barrier ointment for that as well otherwise I would be too uncomfortable.
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