Posted , 9 users are following.
I'm 42 years old and have a "likely" diagnosis of lichen sclerosus. I don't have the white patches but suffer from a lot of burning, occasional swelling and some itching. My daughter, who is almost 13, was diagnosed with LS when she was 5. She's doing fairly well and thank heavens it doesn't seem to affect her, generally speaking. But I'm struggling, a lot. I used to be active, exercising, going on day hiking trips, running the kids to their sports, and so forth, but now I can't even walk more than a few minutes without terrible burning. I can't grocery shop, Christmas shop, exercise, or clean my house. I've gained 20lbs in the last five months. My marriage is suffering, too, both from lack of intimacy and from the depression I'm feeling. My doctor has me on a steroid cream (Desonide) and I use olive oil which has helped with some of the burning. I switched to cotton pads for my period, am using only feminine hygiene wash for cleansing, and use sensitive skin laundry detergent. Can I do anything else, especially when I have flare ups? Also, how do you deal with the depression?
0 likes, 8 replies
I would say don't use feminine hygiene wash - just plain warm water. Use bleach free toilet paper/sanitory products. Double rinse your pants/tight/towels. Cut out sugar / fruit/ artificial sweeteners/ fizzy drinks I would also try cutting out dairy and gluten and junk / processed food.
I think that the hardest part for me was going through a depression period. I needed to put things in order before I could move on. The hardest part was indeed the lack of intimacy. My husband was good about it, but still, I struggled for a good period of time. Even though we tried to find alternatives, it's not the same.
?For treatment I would suggest you read through the discussion "An experiment with borax." I discovered that baking soda baths and rinses helped to get things under control. The use of coconut oil after rinses still is very comfortable. The most difficult area around the clitoris cleared eventually up after I started using borax baths and rinses.
?I have returned back to almost 'normal' and today intimacy is possible again as well. Perhaps it helps you to know that there is a way to live in relative comfort with LS. Diet has been important as well: I have cut out added sugar, gluten, caffeine, alcohol and limited dairy. The diet is a bit of trial and error. Perhaps start with leaving out sugar and go from there.
?Then there is hormone replacement yet. Maybe discuss this part with your doctor.
So sorry to hear of the trouble you've been having. I struggled with depression too, and the changing nature of my life and relationships. Like you my daughter also had it when very young but it went away. It made it worse though because I knew what it was as soon as I got my diagnosis - no gentle introductions there. I feel for you.
Sugar is definitely a trigger, avoid if you can and that will help hugely. I have cut down on caffeine and wine to maybe once or twice a week because I like the taste, but avoiding gluten and dairy have made no difference to me.
What you will find on these forums is that everyone finds something that helps, and we are all different, so follow suggestions and you will find your normal again.
Avoid applying anything with fragrance, that will irritate. Read the thread 'An experiment with borax,' I am another person who found instant relief from it. Baking soda didn't suit me but others have found it really helpful. look for eczema products to wash with rather than soap or special 'feminine' products, and read all the ingredients as sometimes there will be hidden fragrance. Use oils and moisturisers, people here have liked coconut, emu, olive, avocado (my favourite). Get a spritz bottle and rinse after every toilet visit, then put some oil on.
It is a blow, but you are not alone. I cried a lot, and felt really isolated. My doctor at the time told me it was very rare. Three doctors later and I have a GP who specialises in dermatology. She says that at some point nearly every post-menopausal woman will have had it to some degree, and every one she sees is isolated and thinks they are the only one. It's really common, no one talks about it and SO many doctors are misinfromed. The thing that helped most was being here and having other women to share with. We are all here to help you come to terms with your diagnosis and offer help and support. You will find more information here than any one of us has got from our doctors, and we all share what we know.
A big hug to you
Thanks for the suggestions. I've been going through this for almost six months and am willing to try anything at this point. I live in West Virginia in the U.S. and we have a shortage of doctors here. My gynecologist, after seeing him for the fourth time in six months, said he did not know what is wrong with me, that I look fine, and that the things that make me feel worse don't match with anything he's ever heard of. He told me I could go to a specialist three hours away but gave me no information about it, and said that he's tried everything (which consists only of steroid cream and olive oil). He then dismissed me and told me not to come back until my annual exam in six months. Needless to say, I went home and cried. I am glad I found this website. I'll be trying out your suggestions and hope to get some relief.
I hear you on the lack of doctors. I live in Virginia and my GYN has been of little help. I am going to go there one more time in January to see what he has to say about the fusing I have. My next option is to see Dr. Goldstein in DC. I will have to pay a lot of money out of pocket for this.
Anyway, to your issue. I am in menopause now and most of my burning and itching has stopped. I am now dealing with fusing. When I was pre-menopausal, I felt as if I was burning all the time. And my own natural lubrication and discharge seemed to really make it worse. I noticed that the only relief I got was when my period started and I used tampons exclusively. I found that keeping fluids OFF the vulva relieved the burning. Now, I couldn't wear a tampon all month, so I ended up putting vaseline on the vulva (thin coat) and then I would fold up some very soft toilet paper or gauze and place it between the labia and up there enough that it would stay in place. Not quite like a tampon but sort of. For some reason, it controlled my burning and it's how I got through the day at work without it driving me to distraction. Maybe it wasn't the healthiest thing to do but it worked for me.
It is not just sweet stuff you have to watch, carbohydrates too. It is possible you may have a problem with Gluten. Many of us on this site have found that cutting out Gluten has helped. It does not affect everyone, we are all different and so you must see for yourself. Usually, a month of going gluten-free should be long enough to know whether it helps or not.
Some people have a problem with dairy, again it is trial and error. I am gluten/lactose/salicylate intolerant and so my diet is fairly rigid but I still enjoy life and eat well.
It is very important not to cut out everything at once or you will not know what your particular triggers are..remember everyone is different. It could be that if you just cut out sugar you will start to feel good again. Start by limiting sugar and see what happens.
I think once you get on top of your LS flare you will start to feel more like yourself. Try to see this like a military operation, that you need answers, and you will, therefore, have to be strict until you have your answers.
You do not want this burning carrying on for months, and so I urge you to go for it.
I have no real answers for you as I am too new to this to have much information but just wanted to send best wishes and to let,you know you are not on your own. I really hope that you get some relief from your symptoms soon. In my research I have read that a lot of sufferers use coconut oil and say that keeping moisturised is very important. I have bought some today and plan to try it tonight. There seems to be a lot of talk about carb soda baths and something with borax, although I haven’t found that thread yet. Good luck
Join this discussion or start a new one?New discussion Reply