Treatment 'forever' vs as and when symptoms flare up
Posted , 11 users are following.
Having just listened to the Dr Goldstein webinar, I'd be interested to know people's thoughts on this.
Dr Goldstein stresses the importance of continuing the steroid treatment even if you're not symptomatic, as he says there is still active disease even when there are no symptoms, which could increase the risk of cancer.
On the other hand, I've read that a lot of ladies are concerned about long-term steroid use, and only use it when they have a flare up.
Being new to all this, I know nothing about the implications of long-term steroid use, or whether this risk is worth taking if it will lower the risk of cancer.
Anyone have any thoughts or additoinal info on these two different approaches to treatment?
Which do you use, and why?
0 likes, 17 replies
Morrell1951 Joan1978
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judy02533 Morrell1951
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Morrell1951 judy02533
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It's important never to apply or ingest essential oils 'neat' – straight. I bought a small eyedropper bottle, filled it with jojoba oil and then dropped in three drops of the frankincense. I use the dropper to put a bit on my finger and apply it. It's very nice.
kimmiesue Joan1978
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suedm kimmiesue
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i understand there are clinics in Bristol and London in the UK
i have been using. Clobetasol regularly for several years. I am also on
hrt. I get a flare up when stressed or cross! But extra days of the steroid works for me
kimmiesue suedm
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Morrell1951 kimmiesue
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harriet12877 kimmiesue
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Try taking benadyl at night to help quiet the itch. You will sleep but relief from the itch is worth it.
claire12259 Joan1978
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I am mainly symptom free now but even when suffering I couldn't tolerate the steroid cream. It worked initially but then I reacted to it. I told my specialist I didn't use anything at all topically and she was pleased - never said I should use the cream if not symptomatic. Think you could ask 10 docors and you would get 10 different answers!! x
kimmiesue claire12259
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claire12259 kimmiesue
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Not just the steroid cream, even emu oil etc. Anything topically just aggravated the condition so I gave up! So now I don't eat dairy, sugar or gluten. I did start eating gluten again recently and my LS (itching mainly) has been playing up but I have also just had 2-3 weeks of stress so it could just be that! (We had holiday in Italy in August and I ate plenty or pizza and pasta and didn't flare then so thought I could eat gluten again). Anyway we shall see - for the moment I'm back on gluten free unfortunately X
kimmiesue claire12259
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Joan1978
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Guppy007 Joan1978
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My Vjay looks perfect, no white plaques, or cuts or sores, and so there is no way that I am going to apply steroid cream on something that appears to be fine. At first, admittedly I did apply cream between my labia minora and my labia majora twice a week, but I wondered why the heck I was doing this with no visual symptoms or discomfort, and so I stopped that. I sometimes get pain in my clitoris, not often, but sometimes, and then I will apply the cream twice a day for usually around four days, and then I will discontinue use after that. I truly believe that my routine of spraying with salt or bic soda water after using the bathroom, drying well, and lubricating has been far more beneficial than anything else.
When I was first diagnosed, I did not do the research on LS, and neither apparently did my Gyno, because she failed to mention the one most important aspect of Lichen Sclerous that I really needed to know about, and that is fusion!! and of course because of that some of my Vjay fused. Since that time I have carefully maintained my bathroom routine without fail, and I believe this to be the sole reason why I have had no more fusion.
Joan1978 Guppy007
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