I’ve absolutely been in your shoes and you’ve come to the right place. Have you worked out a treatment plan with a doctor yet?
I’ll share my opinions based on my experience so far! For background: I’m 29 years old and I was diagnosed in 2015 (though I believe I suffered from symptoms for 5 years prior to that before getting the correct diagnosis). My initial symptoms were bad itching and nighttime scratching.
“question 1: how quick does lichen sclerosus progress?”
Since my initial treatment in 2015, and after making some changes in my life to treat that area of my body better, my symptoms have actually improved. I don’t believe I have progressed any further.
“question 2: Does everyone who has it end up fusing and losing their womanhood, even with treatment?”
I have minor fusing, or what my doctor referred to as “loss of architecture,” but that happened prior to treatment. Since then, I don’t believe any additional fusing has occurred.
“question 3: im in a new relationship, will i seriously not be able to have sex again?? it doesnt hurt to have sex right now, but fear that it is in my near future. is it ok to be fingered and have the clitoris rubbed?”
You can absolutely still have sex! My best advice would be to listen to what your body is telling you. If it hurts, stop. If you don’t feel good before you start having sex, don’t push yourself into it. That was a hard lesson for me to learn, and a conversation I needed to have with my boyfriend, but honestly it’s changed my whole experience with sex. Before, it would hurt during or after sex and I didn’t understand why. Now I can enjoy it a lot more!
“question 4: are you still able to go out and enjoy life? or does it end up hurting so bad you become a miserable wreck and stay home all the time? Can i still be a happy mom? Can i still work? will i be disabled? it seems like a condition like this would prevent people from being able to walk?”
I’m still enjoying my life very much! Honestly, with my case, I’ve just learned to live with it. Sometimes it’s irritating, sometimes it hurts, but I don’t let that effect me or define me. There are a ton of suggestions in this group on ways to make things feel better, from cotton underwear, to coconut oil, to soaking baths. All of these recommendations have helped me tremendously!
“question 5: i know a lot of you only use your clobetasol during a flare up... why do you choose to do this when every article says you must continue treatment forever to help prevent flareups?”
I’ve only used Clobetasol twice. The first time was my initial treatment in 2015. The second was my only flare up in 2016. I haven’t used it since.
“question 6: if i dont scratch, will i still get scarring?”
I don’t believe you will, if you don’t scratch. My initial symptom was bad itching and scratching. Since my Clobetasol treatments and daily care, the itching has gone away.
“question 7: if i continue to have sex, will it prevent my vaginal hole from skrinking?”
I don’t have a medical background to answer this, but as I mentioned earlier, I just won’t recommend having sex if things hurt.
“question 8: will this get worse or better once i hit menopause?”
This I don’t know either, as I’m only 29.
“question 9: why arent there ANY happy stories about women living their lives and still happily married and still having sex, and not in pain? is it because there are no people like that? is this my future? a grumpy lady?”
I think this is probably because this forum is mainly women looking for advice when things don’t feel good. Things have changed a little in my life but I just have to be more aware of how I feel and how I’m treating my body. But honestly everything else is happy and my sex life is regular.
“question 10: how do you get through the depression? i have many issues, and i definitely wasnt prepared for another issue. i was able to deal with all my issues and be happy after i found my boyfriend who didnt care about all that stuff and loved me for me. But NOW..... if we cant have sex.... then...we will be like... friends. and that is going to be awful. i love being intimate with him. Hes the first guy i actually really WANT to be intimate with. i dont want to become depressed and in pain and ruin our relationship.”
Like I said before, definitely still have sex!! Don’t let this stop you! Just don’t push it, if you don’t feel good. I’d also recommend using lube - it helps prevent friction, which will feel better for you!
“question 11: are there any stories of
women who have a mild case and it never progesses to anything worse?”
So far, this is me! I’ll have some off days where things hurt and I’ll treat with some coconut oil and maybe take a bath or sit around in pjs with no underwear to help cool off. But in regards to progression, so far I’m fine!
“like i said, im in the beginning stages so i dont have any pain or fusing, and i can still have sex(although this morning it felt irritated). im just really scared. im panicky and check my area like 10 times a day. Discovering a disappearing vagina would be terrifying for me, what were your emotions like when you discovered fusing and loss of architecture? Losing my boyfriend would really suck. and it would be even worse if i couldnt be a fun mom to my kid. how will this affect my overall life?”
I completely understand your fear and unhappiness. I felt exactly the same way when I was first diagnosed and I would check all of the time and panic constantly. I’d be lying if I told you that I don’t still feel bad about it sometimes - I definitely do. It was a long struggle for me to come to terms with it and to not let it effect my sexuality and how I feel about my body. Some days are frustrating, some days it hurts, some days I’m bummed or angry about it. But it got better for me over time. This online group has been a godsend to me. Between the support and advice, I wouldn’t be where I am now without these other women. It sucks that we all have to deal with this. But don’t Google things and read about worst case scenarios and look at photos and assume you’ll have the same experience. Everyone’s experience is different! Just continue to talk to your doctor about it and make sure you’re treating your body right and listening to what your body is telling you.