Need help stepping down steroid

Hi, I think you have to insist on a biopsy because you need a firm diagnosis bearing in mind all the other issues that you have going on.  

However, It does sound like LS and I believe the constant itching is due to your diet.  When you stop using the cream the itching returns which is like putting a sticking plaster on the problem but not getting to the source of it.  Being able to pinpoint what it might be is not easy and I think you need to do some research on how to monitor what you are eating or possibly a dietician might be able to help you, because it is far more complex that you would think.  

The other day someone on this site said "I only eat four food items a day" which told me she hasn't a clue.  For example, you may have oats for breakfast with blueberries, a pinch of salt and a drop of milk followed by coffee with sugar, .that right there is SIX individual food items..and that's just for Breakfast.  I had to use a food diary for a year,  so I got to understand how to do it and it ain't easy.  

Some people will tell you it is not diet related and maybe for them it really isnt, but if they still have sores/itching then they are deluding themselves.  I know this because of all the feedback over the years from other women and of course from my own experience.

Thank you for sharing your tough situation. We are dealing with a terrible condition and it breaks my heart to know what you and many others (me too) are going through. when it comes to topical steroid use it almost seems we are damned if we do, damned if we don’t. They are, according to my very reputable gynecologist who specializes in LS, the only thing that slow down the disease and keep from fusing and going white. Many people here disagree that that has been their experience. For me LS has been constant since early 2000. My condition is fairly advanced with almost totally white and atrophy and total fusing on top and the sides. I was prescribed clobetasol from the start and it presented problems for me from the start. I have always used as directed but don’t really like how it feels taking it and knowing it’s highly potent and gets into your whole system. I don’t know if my condition advanced because I didn’t use it regularly (topical steroid) or because it made things worse. All I know is throughout my use I’ve had other health issues too. I believe the steroid weakened my immune system in general. Unfortunately for me so far, the borax/bicarb/baking soda hasn’t helped reduce the white or unfuse - and the essential oils emu oil and aloe, though very soothing, have not changed the color down there back to normal or unfused any of the areas - yes it’s only been two months but when I last peeked it almost looked whiter and drier. I’m not giving up and still using them but have decided I need to go back to my steroid cream two days ago only because I’m desperate now and have so little anatomy down there I’m just scared and figure maybe my topical steroid has been helping? Arg.

I do know this: Overuse of topical steroids (aka corticosteroids) can cause the body to be addicted to it and that side effect is often rash and severe itching. The only way to stop the itching is to get the steroid out of your system cold turkey. When the steroids are used too often they take over the adrenal glands’ role which is to produce cortisol. So when you stop the steroid creams your adrenals don’t know how to function on their own- that’s why you have itching (or could be one of the reasons), this is a vicious circle. Pls feel free to pm me if you want to chat more about it. 

Thank you all for your wonderful and supportive replies. Hearing that most everyone is in the same boat as me makes me both really sad that we have to suffer like this, and really happy that I am not alone. I saw the doc twice last week and she advised the Lidocaine was causing an allergic reaction and to stop. She then saw me 48 hours later and said that since the burning had calmed, she wanted me to try again with stepping down the steriod, but every 3rd day, not every other day, and she prescribed Elidel for the non-steroid days. I havent used that yet as I've noticed the irritation from the Lidocaine is ongoing, not as bad as when I was on it, but still bad. I am waiting for that to calm down before trying something new. I aksed her about going cold turkey and she said no as it causes toxic steroid withdrawal and we want to avoid that. She has also booked in a boipsy for next week. As there is no visible skin changes, she said we would have to boipsy the general area and hope it comes back with something. 

Re diet, my GP referred me to a nutritionist 6 months ago, who took bloods and tested for food intolerance and mineral/ vitamin deficiency. That all came back healthy. We reviewed my food diary which I've had for a few years as I am into clean eating and whilst he was happy overall, he said I need to reintroduce some white carbs like potatoes and white rice to balance things out. He also advised splitting up my high-oxylate foods like dont eat spinach and kale at the same time, rather Monday is for spinach, Tuesday is for kale etc. I asked him if I should go gluten free or vegan free and he said there's no medical reason for it. Eggs are the only dairy product in my diet and he didnt see a reason to stop that either.

Now I am just waiting for my skin to calm down again which seems to be taking forever. I don't scratch when I itch though googling for scratching causes itching was a really good read. Thank you all for being here. I will let you know what happens after the biopsy.