lichen sclerosis diagnosis
Posted , 8 users are following.
hi
i was diagnosed with LS two weeks ago after a hysterectomy. up till then i never had any symptoms. i was prescribed dermovate ointment which i think im alergic to so was changed to betnovate. at the moment i feel like i cant go on with the burning. i have children and they have had to take over. i cry with the burning. ive been checked for uti and all came back clear as well as for thrush. i have never been so miserable and upset in my life. Dr Google has not helped with all the bad stories and i was hoping that you might have some good news stories before i go out of my mind.
thanks in advance
Trisha
0 likes, 9 replies
maggie27191 trishafox1967
Posted
I think the most gentle thing to put on is cocunut oil for some moisturizing for the moment. People have found caster oil good.
Very best and lots of love ❤ Maggie
jean71564 trishafox1967
Posted
Hello, I so understand your pain from burning. It was horrific for me also. I finally called my gyno and she gave me lidacaine pain reliever to use prior to peeing. It definitely helped. I also use A & D ointment or Aquphor as a barrier when needed. These also are a tremendous help. I wash/cleanse daily with Aveeno Naturals Body Wash. I am pleased to say I have been pain free, itch free and symptom free for about 6 weeks. I hope this can help you to get relief. Let me know if you have any questions.
sarb73328 trishafox1967
Posted
Guest trishafox1967
Posted
Hi Trisha,
You have come to the right place. Everyone here understands what you are going thru. They are more then willing to share some of their experiences and what has helped them. I have had LS for a little over three years now and I am one of the fortunate ones who has had very few symptoms even when first diagnosed. I have not experienced the itching and severe burning a lot of the ladies have, but when I do have a little irritation I use Destin baby cream and that helps me. Everyone is different but I am sure that some of the other ladies who have experienced the same symptom as you will reply to you and tell you what helped them. I am now on clobetasol ointment once a week (I was started on twice a day for two weeks, then twice a week for about nine months and then once a week which I have been on for a little over two years) There is hope. My specialist has told me that we appear to have this disease under control and it is stable. I will continue to see her every six months and use the clobetasol. Have you talked to your gyn or whoever diagnosed you, about the burning you are having? I would suggest you don't go to google to look at the pictures as they show only the very worst cases. This disease can be controlled by seeing your doc once or twice a year and using medication. Please be sure you are seeing a doc who is knowledgeable aboutLS. Not a lot of them are! I changed from my gyn to a vulvar specialist because gyn was not really knowledgeable about LS and that was the best thing I did! Good luck and let us know how you make out.
trishafox1967 Guest
Posted
thanks so much for your message, the clob is making my life unbearable so i have been changed to a cream called betnovate. my gyn is not very sympathetic. i has my hysterectomy 7 weeks ago with him, The urethral burning is the worst but there is no infection. i am now on tablets to calm the nerve endings, xanax, sleeping tablets, anti depressants and the ointment because my day to day life is a misery, with christmas coming up im going crazy with the stinging. i live in Ireland and i cannot seem to find a consultant who has proper knowledge of LS
Guest trishafox1967
Posted
Hi Trish,
I am so sorry you are having so much difficulty! Hopefully someone else who lives in Ireland will see your post and may be able to lead you in the direction of someone knowledgeable. I am in the USA and am lucky enough to live in an area where a specialist is near by. I feel so bad for you! I know some of the ladies use a borax solution which seems to help them. I am not sure of the mixture but I am sure one of the ladies can tell you. I have never tried it as I don't have the stinging but it seems to work for the ladies that have used it. Hoping you can can find relief. Please let me know how you are doing.🦋
Bridge_of_Sighs trishafox1967
Posted
so sorry you've joined us. A bit hug to you. You'll find, sadly, that unsympathetic gynaes (especially male ones) are a bit of a common problem. Spend some time cruising the threads here and see what others have found helped. There's a myriad of things to choose from. We are each different and you have to work out what's right for you. I for example thrive on borax rinses and avocado oil, and get UTIs from bicarb rinses and sore from coconut, but those are the perfect things for others. So keep on trying out people's suggestions until you find what's good for you. Try to have two things as you need to change occasionally or your body gets used to it.
Look of a vulval dermatology clinic to see if you can get a referral. Some people have had better treatments from dermatologists than gynaes. After trying 3 surgeries I finally found a great GP, but it took a while. Is your GP any good? I'm in the UK, so can't help but there might be other people in Ireland on this forum. You could try a new thread 'Anyone in Ireland got a good consultant...?' and see what comes up...
Sorry for random tying (in case any slipped in) I've got a cat competing for attention with my keyboard, he's trying to sit on it!
trishafox1967 Bridge_of_Sighs
Posted
Hi thanks so much for the information. I'll start a new thread now. I'm here at the moment, after another night of little sleep and alot to do for christmas, going crazy . Its so frustrating that theres no cure
seginns trishafox1967
Posted
I'm having similar problems. I have found that olive oil can help with the burning, even if it's just for a few hours. I'm applying it two or three times a day.