I had my biopsy yesterday. I'm pretty sure it will come back positive. I'm heartbroken. I'm 37. I feel like I can't be a good wife and like my life will be over.
I'm also in discomfort. Burning, dryness...I've been give Estrace for shrinking parts until biopsy comes back, but my estrogen was checked and it is fine.....I feel like I want to crawl in my coffin now...I have 3 small kids. Im finishing up grad school.
I should be happy right now...
Hi,
sorry for how how you are feeling and welcome to discussing a subject here we can’t mention anywhere else
once you have had some feedback and read some threads you will feel a lot better. I felt the same when I found out more so because I’d never heard of Lichen Sclerosus and was sure I had it from google even before the hospital visit. My gp had never heard of it. It will help you a lot if you find a good moisturiser that you get on with, I use YES moisturiser I got it from the internet, it’s lasted ages it should help with the soreness and dryness. My biopsy came back inconclusive sometimes it does that so be aware of that. X
Sorry to hear you've joined this somewhat exclusive club but please don't despair. Life does not revolve around LS unless you want it to. Try everything on this forum - there will be something that works for you. It took me 4 years to learn about it, but caster oil applied to the dry, sore, itchy bits has helped me enormously. My considerably younger husband still fancies me and there's more to life and love than penetrative sex! The first gynaecologist I saw for this condition was the most wonderful man. He sat me down, took my hand and said LS will be with me always, I must see it as my friend. Such words of wisdom - learn to live with it and it won't take over your life.
A woman it can be okay. There are treatments, it's just practice finding what works for you but you can. I have and it doesn't affect my marriage or my kiddo anymore.
Have you been tried on a steroid cream? That's what helped my lichen the most. That and cutting out sugar.
Don't give up. You can life with it happily. Forums tend to be for the worst stories when people need help. There are tons of people with positive stories too. They just don't get shared as much
That's was meant to say "don't worry", not "a woman"!
Hi Assilem
So sorry to read you feel like this. I’m also awaiting biopsy results and like you am pretty sure I will have LS..although my dermatologist wasn’t 100% sure I’m scared to get my hopes up. I’ve done so much research and joined the support groups on Facebook where there is so much advice and help from other ladies in the same situation. It really helps to speak to others who are going through the same..there’s so many ways of managing your symptoms. I will be distraught too if it’s positive but I’m determined not to let this ruin my life. It’s not a death sentence we can get through it! Hopefully once we find a treatment that suits us it will stay away!
Are you in the US? Have you heard about using Borax (in the bath) it’s helped so many ladies manage their LS. It’s available in your stores but we have to get it online here in the UK. It will be something I’m willing to try to stop the progression. Lots of ladies claim it’s cured them!! If you want more info it’s all on here or on the Facebook groups. You are welcome to private messsge me and I can send you some links I have.
Try and stay positive as stress can make things worse.
Please let me know how you get on.
Debbie
Yes, I am in the USA. I was treated for recurrent yeast for over a decade! I am now mssing 1 minora and dr. Said clitorus is shrinking...I cry hysterically over my missing parts.
I have no white patches. I dont want to stop having sex with my husband at 37 years old. I am terrifoed of the future. I don't even want to get out of bed. I have to because I have a job but I am totally not motivated.
Hey there,
I hear you. I was devastated by my diagnosis. I’m 28 and newly married. I was feeling like my life was over, my intimate life ruined, why did my poor husband get a wife with a broken vagina?
But so far, the clobetosal is helping to control most of my symptoms. And I’ve gotten so much good advice from the people on here that I’m hopeful. I’m using a bullet journal to track my symptoms and noticing that many days I feel fine.
I feel empowered when I have solutions ahead of me. Some of the things I’m trying include:
Cutting back sugar and dairy
Taking a multi vitamin and omega 3s
Getting probiotics
Drinking unpasteurized apple cider vinegar
Really good lubricant
Moisturizing down there with coconut oil
Some of the things I intend to try;
Baking soda baths
Vaginal dilators
Asking my doctor about a specialist
Eastern medicine
Keep going. Don’t give up. Everybody has illness in their lives or things wrong with their bodies that you might not know about.
Stay strong. We’re with you.
Sue,
Which yes cream? In Amazon I see “yes to tomatoes” and “yes to cucumbers” etc.
I’m looking for an alternative to Emuaid, which I have never tried because it is so expensive.
Jules, how frequently do you out in your steroid cream? I’m supposed to be doing it twice a week but I don’t feel like that’s controlling all the symptoms.do you know if steroid cream stops the changing architecture? I’m curious like if I’m not itchy and not cut, am I still losing my labia etc? I feel like my vaginal opening is still closing.
Hi Elle
So sad to hear you have to deal with this so young. I have 2 daughters in their 20s and pray they don’t get cursed with it.
Are you also in the US? I ordered Lisepten from Cloverleaf Farms as I heard it was very good (I’m in UK). Going to use it once I heal from biopsy.
Can I ask how you take the apple cider vinegar?
Also which probiotic you take? I’m taking Vit D and Magnesium Glycinate.
I’m wondering what others use to help stop the shrinkage ?
We all need each other’s tips on here!
Debbie
Hi there. There is no doubt that it is devasting when you first hear the news that you have LS. But everyone is correct in that you will come to terms with it in time. You will need to start reading as much about this condition as you can because you cannot always trust the doctors and you have to be your own advocate for this disease. Also remember that you will likely go into remission, probably lots of times and it will feel like you are perfectly fine when that happens.
It looks like you have got great advice and so I am just going to list for you some tips that will help you.
Buy some dilators and use them regularly when your in the shower...this stops your Vjay from becoming too narrow for sex....very important.
Use some kind of oil like emu oil, coconut oil before bed as I believe this stops the labia minora fusing to other parts of your Vjay.
After using the bathroom spray with a little water and salt or water and bicarb of soda. This removes any urine and stops irritation.
Never ever have sex when you are sore down there.
Use the Clob cream sparingly and always use a mirror to make sure that you are applying it in the correct spot.
Look up the thread 'An experiment with Borax' on here as many women swear by it.
Finally, by using your dilator with ky jelly before sex you will find it helps things a LOT.
Thank you 
Right now I’m trying to get probiotics in food like yogurt or kefir. Probably i need to find a better way, since I don’t get it regularly and since I may cut out dairy. Cutting out sugar is so hard!!
I’m in Canada.
I put 2 Tbs if ACV in about a half cup of water and drink it, not on an empty stomach. Can’t say if it’s helping. Probably shouldn’t be trying everything at once... not very scientific lol.
I’ll look into the Lisepten— thanks for the tip.
You’re right, we all need each other’s advice. I also need help with the shrinking... it’s the part that makes intimacy the hardest for me. 
So helpful! Thank you!!
That’s good advice I’ll be remembering those tips should I need them!
One thing I’d like to know is when you go into remission I’m assuming it’s when you have no flare ups for a period of time? What I’m confused about is where do you apply the clob as maintenance if you have no visible issues ie white skin or soreness?
I would like to know this too!
Hey Elle, I use 2-3 times a week when I've not got a flare up but daily as soon as any itching comes on until it's gone.
Having fertility treatment at the moment so trying to use it the minimum possible just in case
Thanks!
Thanks it’s all trial and error isn’t it but I’ve heard good things about ACV too as well as Borax soaks.
Taking all these different treatments in is mind blowing too!
Hi, Remission is when you have no itching/sores/cuts white plaques of skin etc.
Your second question is a good one and you will find that there are two different trains of thought with regard to this. Some people think it is beneficial to use the Clob maybe once a week even though there are no signs of LS. This is classed as maintenance. Other people don't believe that is a good idea due to the strength of the Clob.
I cannot honestly say who is right or wrong. You have to decide for yourself. I chose a long time ago not to use the Clob at all unless I have a flare up which for me is very rare.
That being said, in the last year I have noticed an acceleration of my Vjay reducing/shrinking and I now only have one labia minora. It would be easy to say that is because I have not used the Clob, but I think it is due in part to the different medications I have had to try this last year for a different problem. I am now on Humira after trying many other meds and I think this impacted my LS. Incidentally, when I was taking Methotrexate for Arthritis I had a severe reaction with ulcers in my mouth and vagina, and so it is not always just foods that can trigger a LS flare ups.
It does make me a little uneasy though and I do wonder if I had used the Clob this might not have happened, but at this point who really knows.