Hi All,
I am hoping someone can offer advice. I am in the uk, 38 years old and presented with severe itching and white patches 'down there' a year ago. My GP visually diagnosed LS, and sent me home with Betnovate ointment and Cetraben emollient. I used it as prescribed - twice a day for 3 months, then once a day for 2 months. For the last 6 months, I have had problems stepping down the Betnovate to every other day. Every time I try, the severe itching is back within 24 hours, plus the stress is causing me to have 2-3 periods a month which just adds to the drama. I've been referred to Dermatologist who said she can't see why LS was diagnosed as I dont have any change in architecture and she can't feel any thick skin, and there is nothing to biopsy. Then got referred to Vulva clinic and doc there said the same and is not convinced its LS, but did say I have to try again to step down from the steroid. She gave me Lidocaine and said to use it once a day in the evening, with Betnovate in the morning for a week, then try Lidocaine once a day with Betnovate every other day. I am still in the first week of 'dual running' and 4 days in I'm back to severe itching but with red rash and pimples front and back which is new. I have emailed the new doc to find out if this is normal or if I should stop the Lidocaine and waiting to hear back as this definitely does not feel normal. Over the last year the things I've tried to stop the itch is epaderm ointment, coconut oil and emu oil but these had no effect; only the daily use of Betnovate stopped the itch. I already have a restricted diet in place, no sugar, regular exercise, for many years prior to getting this and have never had any health issues before this other than the odd cold/ flu in winter. I am currently waiting for my aloe vera gel to arrive, but I was wondering if this is what everyone (appreciate different people all have different experience with this nightmare) with severe itch experiences when trying to step down the steroid? Does the itching ever stop? After a year of suffering, I only just got my head around this thing and felt like I was in a good place, and now I am back to square one, its very heartbreaking and hard to start from scratch again to get a diagnosis. I know a lot of ladies have felt the same over the years and this forum has been a lifesaver for me. Thank you for reading/ listening to me whinge.
I’m following discussion as I’m having a rough time stepping down too. I was down easily to once a day with betamethasone but I’m in a terrible “flare” (my new normal, sadly) and am back to clob twice a day. Mostly for pulsing/activity I can constantly feel and active pain. The clob is semi-irritating at first but the only thing helping even if only a little.
I use emu oil, aloe and a couple punches of baking soda in squirt bottle every bathroom visit. I either baking soda soak or do a compress every day or every other day.
I’m kind of at my wits end. Day after day and feeling tortured.
I live in Southern England and would like to know where a Vulva Clinic is. I've had this since 1998 ish, and no one mentioned one to me. Marvellous isnt it the stuff we find out on this kind of forum.
Hi Susan,
Do your research, which hospital cover vular clinics. I found that the London free hospital had amazing reviews for LS so requested my gp to refer me. Although it was a trek too & a good 5 month wait for an appointment. With LS you have to instruct your gp what treatment you require as they a) don’t know b) just want to move on with next patient. Good luck.
Hi hun I can totally sympathize with you. I’ve just turned 38 been diagnosed 6 months ago. All this mix information just is confusing, I’m having the same issue my gyno is saying now it’s just a skin condition see a dermatologist no LS present. But 3 months ago it was. I’ve stopped using clob as white patches have gone, left with itching at times and dry skin. Vulvar clinic now say I’ve got fusing happening to labia minora and most it it has shrink specially one side!
I’m freaking out as I’ve completely changed down there.
Work what’s best for you as these professionals just can’t deal with these issues and fob us off with no cure for LS.
Are you dairy free by any chance? I’ve found that changing my diet helped.
Hello. I can appreciate your pain as I’ve had severe nightly itching for over 4 yrs. I did have a biopsy done and my Gynecologist confirmed LS however at the time she said it did not appear as LS. I have no other symptoms.
I have tried clobesterol (steroid) but it irritated me. I’ve also tried every kind of oil, coconut, olive, caster and even canola. I’ve used aloe, wild yam salve, baking soda baths and recently an ointment I ordered from Amazon that I had high hopes for- no luck. I regularly check this forum hoping someone finds something but so far nothing has worked. I’m also on a restricted diet-no sugar, gluten or dairy. Also gave up coffee. Wish I had some better news. I’m still looking for the cure.
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.
Since you’re referring to me, I’ll explain.
I eat beans, greens and a protein 3x a day. I’m not including salt, pepper, olive oil or vinegar in the 3-4 foods I initially told you as I’ve already tested each one separately. You see I have done my homework and do have a clue. Thank you. As for the other foods I’ve tested them all too. It’s super easy to test what you eat when you are on a restricted eating plan. My diet is limited not bc I have LS but for health. This is not to say I do not eat foods like carrots and blueberries ever, I do. But I have limited my diet to 3-4 items for weeks on end as a way to test for triggers. There are none for me. Food for me has nothing g to do with my itching.
Hi
I wanted to ask if you still itch every night? The reason I ask is because for me the itching itself was causing all my problems and the itching was a vicious cycle that your body gets into an itch cycle and if you can STOP the nightly itching you will heal. Stopping the scratching when it itched was something I had to figure out how to do because I would scratch in my sleep and not know it so I decided to tie my Jammie pants in a knot at night so I could not get to my vulva and the first 3 nights were very hard and I would wake up with itching that I wanted to scratch so despertly but I just coated it with coconut oil and did NOT give into the urge. After a week the itch cycle calmed down and the itch went away. What I have discovered after having LS for 35 years is that if you stop scratching the itch you stop the progression. I was just wondering if you have tried NOT to scratch when it itches.? I am 55 and I was diagnosed at age 21 with a biopsy, but I do believe I have had this since a small child. I hope you get some relief as I know this disease to be very life changing.
Hi j14251, if you are happy with where you are at with your LS then that's all that matters.
Hi. Thanks for sharing. I actually read your post a few days ago on the subject and have thought of it every night since. Your will power is amazing because it is not easy and I have not been successful. As dumb as it sounds I have these unused oven mitts that I think I’m going to put on before bed and see if that helps. Like you experienced, I too wake in the middle of the night scratching. It’s torture and bliss if you know what I mean. I know I need to stop-it’s so unhealthy. I really appreciate your support! It’s good to know someone else has gotten past the terrible itch.
Please stop commenting to me. You have absolutely nothing helpful to impart. You believe that you are right in everything LS and diet is the only culprit for itching. Well everyone is different that has been proven in all the varying symptoms people have. I have proven diet is a non issue for me and you are angry about it. We’ll take it to your therapist.
Hi
I know exactly what you mean about it’s pain and bliss at the same time because nothing in this world felt as good as scratching that itch. It was almost euphoric. I think the reason we can’t stop scratching is because it is so pleasurable while we are doing it. I too tried the gloves and what I noticed was I would take them off in my sleep and there I would be scratching. I also tried skiing gloves where you could tighten them really tight with the Velcro those worked a little bit but for me the only thing that worked was wearing a pair of jammy pants that I could tie in a triple knot so I could not get my hand down there to scratch. Once you stop the itching cycle the tremendous urge to itch will be gone. I would only ever scratch at night and let me tell you it was very pleasurable but the damage that I would face in the morning that would take a week or two to heal had to end. All of my white callous patches came from itching and I remember that I could literally after a week or two peel them off. It was the body protecting itself from the trauma of scratching so it would build up a big white callous and then a week or two later it would shed. I remember being able to pull the white patches off as they were healing. I would wake up in the morning after a night of scratching and my first pee in the morning would sting so badly because I had made my skin so raw. The self discipline I had to stop the scratching came from knowing that the older I get the worse it would become.
As you go to bed each night tell yourself I WILL NOT SCRATCH. Your mind set will subconsciously keep you from scratching so tell yourself before bed each night I will not scratch. But then of course you must have some hindrances like your pants tied in a knot or gloves over your hand to also aide you in not scratching. For me it took about one week and after that one week the itch cycle was gone. Start tonight. I am rooting for you!!
Hi forumuser,
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.
Errmmm excuse me..I was replying to your post to ME..your the one that has had your posts removed by the moderator, not me....this is the last time I will be responding to you.
Thank you so much! That helps a lot!
j14251 this group is about supporting one another not insulting them. Guppy007 has nothing but helpful things to say and is very supportive.
Pls refrain from being hostile.
Hi. I wasn’t being hostile. I was defending myself. I spoke up to support the woman who was using her tens unit for relief. Guppy made a comment that she had no one to blame but herself for her diet. I took offense to that comment as a person who has tested everything she eats. Let’s move on now. Thanks.