Lichen Sclerosus
Posted , 12 users are following.
Hi everyone, I'm Brit and I'm new to all this.. I was diagnosed with Lichen Sclerosus little over a month ago and honestly I have alot of questions about this disease I'm 25 so my biggest question is.... Will I ever be able to have children? And I was wondering is there certain foods and drinks I should stay away from? And are there certain foods I should eat? So far the creams I've been using hasn't worked... honestly nothing the doctor has gave me and told me to do has worked and it's getting worse and the pain is absolutely horrible 😔 I don't know what to do
0 likes, 19 replies
jeri24294 brittney25
Posted
Hi Brittney, you didn't say what kind of cream you are using. Most of us use Clobetasol and a moisturizer oil. Baking soda spitz baths are helpful and some use Borax ( you will have to find the texts about that). I use ivory soap, it doesn't irritate, but you have to rinse very well. Sugar bothers some. Sex is a problem for many but I would think you could still have children...you will have to ask your doctor. There is so much info on this site...keep reading and good luck. Let us know how you're doing.
brittney25 jeri24294
Posted
Thank you for you comment. I'm sorry I didn't think to put the cream I'm using up It's Estrace cream which like the cream before it.. it hasn't done anything 😔and I sure will.. I'm suppose to go back to the doctor tomorrow
linda22319 brittney25
Posted
brittney25 linda22319
Posted
Thank you for your comment I'm looking into different baths and I'm gonna try the one you said
UlliS brittney25
Posted
I am sorry to hear about your situation. It can feel overwhelming at first but don't let it consume you. The good news is that you can have children. I've had LS for almost 40 years now (since my early teens) and I have two wonderful daughters. The condition has affected my life (I would lie otherwise) and penetrative sex has been difficult from time to time. But I can still enjoy sex and reach an orgasm. Clobetasol is standard therapy but also I have had limited effect from this treatment unfortunately. It is important that you find a moisturizer that works for you. For me, white vaseline is the best but everyone is different. I also use baby zink ointments when the area is very sore. It might feel awkward but keep the area active, stretch the vaginal opening with your fingers or by a dilator set so that you prevent narrowing and scarring. But be gentle so that you don't hurt yourself. If you have a partner, try to stay sexually active. But if you have a bad flare, it is wise to wait until you are feeling better. It might help with local anesthetic like lidocaine in bad times. As many diseases, it goes up and down. Take good care of yourself and stay as healthy as possible in other ways. You will learn how to live with this, even though it is hard right now. All the best!
brittney25 UlliS
Posted
Thank you so much I'm glad to know this because dealing with this as you know is hard I'm gonna try the things you said hopefully I can get some relief.... and thank you for putting my worries about having children to rest. My husband and I was trying up until may when we had a miscarriage we were gonna start trying again in June but this came up at the end of June to make a long story short I finally found a doctor that told me what I have.. and put me on Estrace Cream which like the last cream hasn't done anything good. Hopefully what you have told me will help me thank you again so much
claire12259 brittney25
Posted
I found changing my diet put my LS into remission. I gave up sugar (including fruit etc), dairy and gluten. I also take MSM which is an anti-inflammatory. Alcohol also irritates and diet pop. Basically everything you want to eat!!! TBH I have been eating gluten and (small bits of) dairy again and it hasnt botherered the LS. I found that anything topical irritated me so I had to work from the inside out!! Everyone has different triggers that inflame their LS, you just have to work out what are your triggers!! Good luck in your journey xxxx
brittney25 claire12259
Posted
Thank you for your comment I've been trying to eat a Gluten free diet and drinking nothing but plain apple juice with no sugar or anything else in it and water and I'm trying to give up my sweet tea but that is so hard lol
Tree_hugger brittney25
Posted
Hi Britney,
I can totally sympathise with you... I am 46, I only got my diagnosis last week, although I think it's been building up for at least two years and misdiagnosed.
I am currently on Dermovate ointment, is this what you were on first?
I feel like my symptoms have got worse since I started using it (and only been using it 11 days). Feel it gets a bit more worse every day...
Trying to keep my chin up, but it's hard isn't it... I had to go private to get my diagnosis. I'm going to try and get back in with her over the next week.
I take oatmeal baths (grind them down in a coffee grinder and add about 1 & 1/2 cups to a shallow bath) This does calm my symptoms down, but different things work better for different ppl.
I saw a film by a dr Goldstein that said, when applying Clob (Dermovate), to soak in the bath for 20 mins, and apply the ointment after, making sure you gently rub it in for 90 seconds. This apparently makes the steroid get deeper into the the lower level of the skin where the irritation is.
All the best xxxx interested in what you were on 1st
brittney25 Tree_hugger
Posted
Yes it was but I wasn't told to take a bath first I just put it on I wish I would have known to maybe that would have helped so far nothing has 😔 I went to the doctor yesterday and was told it's worse so she's is sending me to another doctor fingers crossed this will work.. I'm gonna try that oatmeal bath you talked about tonight i hope it helps and I hope you get help with yours too hun I wish I knew how long I've had this but I just notice it back in June and I thought it was some kind of yeast infection so I used over the counter medications that didn't help so I went to the doctor in July she thought it was a fungus gave me medication that didn't do anything finally I found a doctor that told me it was LS but none of the medications so far has done any good I'm hoping this new doctor will help me 😔 hope things get better for the both of us
Tree_hugger brittney25
Posted
It's all so disheartening isn't it.
I decided today to go and have the O-Shot in London. My god it's expensive... Not available on the NHS yet, but clinical trials have proved it works well for women (and men) with LS. Many women have it done to help with sensation and give a better orgasm - well I'd be happy with it just aiding my LS into remission! 😅
Dermovate has done nothing for me yet, but I am only on day 11. I'm hoping this 'O-Shot' will prove exactly what I need.
The best of luck with your appointments. Let me know how you get on with them and I'll try to remember to update you on the O-Shot thing.
If you want to find out more about it, Google 'O-Shot Lichen Sclerosis'
Sending you lots of strength xx
janet80455 Tree_hugger
Posted
Tree_hugger janet80455
Posted
Hi,
I went for it yesterday. The procedure was uncomfortable but bearable and I'm surprised I don't feel more sore. I heard that some find a difference in days, others in 2-4 weeks.
Hoping it works for me, they were very confident at the clinic and seems they have a lot of success.
I guess time will tell! In the meantime I will carry on my personal regime.
Xx
brittney25 Tree_hugger
Posted
Thank you an idea will Google it I'm very interested even though I'm probably going to be stuck with this cream and yes that was what I started off on now that my biopsy came back positive for Lichen Sclerosus.. my doctor has me on Clobetasol Propionate Ointment which so far hasn't done a thing for it 😐 😔 I wish you all the luck and hope things get better for you.. I've been wondering if this horrible disease can cause depression and anxiety because I've been really down lately I just want to get back to normal again I want to stop hurting and go back to work.. I just want my life back 😭😭😭
Tree_hugger brittney25
Posted
I know what you mean. I've been off work for weeks. I have to say that PRP (O-Shot) has definitely made a difference to me.
Although I did something stupid today. Sorry for blunt description: I tidy up, but I don't shave. Dr asked me to shave in the days after so they can monitor progress and see more clearly.
So, because I've been so much better, I started to shave, but didn't intend to get rid of all. So what I d managed to leave myself with is a bit stubbly (not used to shaving) and it's like needles prickling me. Bloody awful, should have thought about it more... now I'm stuck between, do I let it grow and will become more comfortable, or do I carefully shave better so there is no stubble. Nightmare. Can't walk around because it's uncomfortable - feel such an idiot.
Anyway... that my current hell!
I was using Dermovate, but decided was making my skin worse. Then next day had big inflammatory reaction to the sudden stop and do I started using Betamethasone which is weaker.
This took my information down in time for the PRP treatment. Got better and better throughout the week and now this!!! And all my fault.
I actually got som councilling to deal with depression and anxiety over all this. It is no surprise that you feel terrible at times, look what we are going through, it is really distressing.
I also tried Amitriptyline - one doctor put me on a dose too high, so I'm reducing down to 10mg slowly.
What is your next move? Will you see if the doc prescribes a different cream?
All the best xxx
janet80455 Tree_hugger
Posted
Thanks for answering back!
I know this sounds dumb but I'm not experienced with LS treatments at all ... just diagnosed a little over a month ago. I'm curious where exactly the O-shot is administered and if it is one single injection or multiple ones, and if you have to go back for more, and, if so, how often.
Can you really tell a positive difference? If you are pleased so far, would you mind sharing which symptoms you have seen an improvement with since the O-shot?
joanna43- janet80455
Posted
Nancy_K_B brittney25
Posted
Brittany... if you are still online here, how has it been going for you? Have you discovered that Vitamin D deficiency is one cause? have y ou taken any Omega-3's? I'm in my 70's now and just diagnosed, but I was SO grateful for teh poster who mentioned Vitamin D to me as well as MSM. HOpe all is well with you.