Flare up

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Hello all , just looking for advice . Had this now for 9 weeks (diagnosis) , been on Dermovate twice a day , GP said for a month then reduce , have done a month , then down to once a day . When I try to reduce from that I have real trouble . The best I have got it to is every other day with the lower dosage steroid on the other days . My gynaecologist told me to also put it on the perenium which has now gone completely flat !!!!! Last Thursday I felt a sting when I put it there , went to see GP who said how well it s looked , at that time I was four days into every other day with the Dermovate . By Sunday I had the throbbing paper cut feeling g round the clitoris and burning along the perenium , so am now ( since yesterday) back up to twice a day . I was following a thread on here where a lot of women said they felt pain in that area , this is the first time I have had it , I feel like I almost need to buy a ring to sit on. Have covered myself in sudocreme, I suppose what I am asking is , is this all normal , I had a really great couple of weeks where I thought I had a handle on it and now this ? I have very bad anxiety , and have LP on my back and feet and also oral LP I hasten to add that these appear to be getting better , but in my mind I now have LP in my vagina , my GP tells me that this is extremely rare and there are no signs of it whatsoever !!!!!!! How long does this take to settle down please ? I assume heat affects it to ? I am worried now as I am going on holiday in three weeks xxxxx

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  • Posted

    I’m also going on holiday in 3 weeks and concerned about getting a bad flare up.  My symptoms don’t ever seem to completely go away however I’ve stopped using the clob because the white patches I had had gone.  It’s the swelling, burning, itching and general discomfort I feel.  I soak in a sitz bath every other night with approx half a cup of bicarbonate of soda and 2/3 drops of lavender oil.  I also put coconut oil on all day, as in 5/6 times a day.  I think the frequent application of coconut oil  is what’s making my sysmptoms bearable.  I’ve noticed the burning has got a little worse since around ovulation.  It seems to be that my natural lubrication which occurs during ovulation (become more wet) irritates me and stings.  I have no idea why! Like many others, I also believe alcohol plays a big part.  I very rarely drink however I had a few gin & tonics over the weekend.  Sure enough my symptoms have flared up a bit this week.  I don’t know whether this is because i’m Ovulating (I use an app on my phone so know roughly when) or if it’s down to the alcohol, or both!  Anyways, I would recommend lathering down there with coconut oil every day.  It’s helped me massively!

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  • Posted

    Hi Jane , sorry to hear yo are struggling it seems never ending does it 🤦🏻???

    I also bathe in bicarb and lavender oil, but have reduced the amount of baths i have as this seems to agrivate things in general. Tried lots of things but think i have over done it and find less is more beneficial.

    Synal cream has helped me passed few days and i have stopped using betnovate.

    I am also taking magnesium and vitamins D and B with zinc.

    Letting the area breath also helps so go commando as much as possible .

    I do so hope you get some relief soon xx  

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  • Posted

    Hi Jane,  Sorry for what you are going through.  I started using Emuaid every day all day and it has helped considerably in taking away the itch and helping me look more normal down there.  Yesterday it felt like I was having a flare up, but I did not resort to Clobestol this time, just Emuaid, and it worked.  I only use Clobestol when the itching is unbearable.  It's worth a try.  All the suggestions here are good but it all comes down to what works for you.  It takes a lot of time and experimenting.  I would say go on vacation and have a good time and just be mindful of your situation.  Because LS is so unpredictable, one shouldn't let it rule our lives.  it's a workaround since  it is most likely here to stay.  I hope I have helped.

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    • Posted

      Thank you . I know I have to get used to it , just when you are so newly diagnosed every little pain or itch etc is magnified , once I get the hang of it I think I will be ok , let’s face it you have to be don’t you ? Thank you so much for your kind helpful words , at least I am not alone xxxxx
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    • Posted

      Hi Jane,  I bought it on Amazon and there are different formulations.  I bought the red label:

       

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  • Posted

    For me I have found that stress is almost an instant cause of a flare. Heat is a problem and tight clothes. Don’t wear panties to sleep. Hope these tips help. Enjoy your holiday!
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  • Posted

    Jane- I can only relate my own experience. I am  24 days diagnosed, left for month long vacation the day they called with results, so I hv had NO Steroids or medical treatment. Have been using homeopathic Emuaid and Emuaid Maxx- all ulcers are gone, all pain is gone, clit is no longer swollen, 99% itching is gone, (had a bit after eating some ice cream- sugar is NOT GOOD). I used a moisture barrier with Vit A, D, E after every time I pee. Have completely re- vamped the way I eat, Low Oxalate, no wheat, very low carb,   very little sugar, lots of water. No Dr appt until July 24, until then I am treating on my own. I can feel an anal fissure?  ( rough, thick skin) on my perenium near my butthole, hv been rubbing Emuaid on that as well- no burning or pain.  From everything I have read on this site and all my research I truly believe what we eat is the main factor, and stress is number 2. I am on vacation, trying to relax, de- stress and figure- this out before I return to real life ( 4 jobs, three kids and hubby). Good luck to you! 
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  • Posted

    Hi Jane, have you changed anything food wise? and drink wise? because if not that could be why you are struggling. 

    I think this is the hardest hurdle for people with LS. 

    It doesnt matter how many creams and oils you use the itching and all that goes with it will continue if you don't address the root cause which is diet.  

    The thing is that the steroid cream is a temporary fix and you cant use it indefinitely, like every day, and so you do need to get to a place where you can use it just occasionally.

      

    The fact that you are suffering with OLP and rashes means you need to really look carefully at what you are eating and drinking.  I have had rashes on my back and on the top of my feet, and I have OLP too and so I know exactly how you must feel. but fortunately, I have had no issues for quite some time.

    I feel bad for you, I know its awful especially when you have got a lot going on with the rashes etc.

    I am sure the doctor is probably correct when they said you don't have LP in your vagina because LP is easy to differentiate from LS because with LP you would have ulcers/sores on the inside of your labia minora.  If you are clear then it is LS that you have which presents itself with sores/ulcers outside of the vagina.

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  • Posted

    Hi Jane, from what my specialist an Immunologist Dermatologist told me most practioners cannot decifer LP in the vaginal area; he said I have it! In addition he felt is was causing me more problems than the LS... I have not been able to have any normalcy since this mess took off, everyday I am reminded. I cannot walk much because I cannot find a lubrication that does not irritate me down there. This thing is horrible! You have to get a handle on the anxiety someway, somehow... Heat does effect it!!! I am trying to stay out of hot weather, who needs fresh air in the summer anyway!!! Keep working at it..
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    • Posted

      Hi Linda, Have you tried vaseline or organic castor oil.  Those may not irritate you.Try going commando too. I agree, this thing is horrible.  Every day I wake up to a different landscape down there.  Ugh. Good luck.
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    • Posted

      I have not tried castor oil but will pick some up along with some emu oil. I have to go commando many times because any underwear just causes more problems the next day.

       

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