Lichen Sclerosus-QUESTIONS: scared/progression/sex/life/depression/anxiety

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i have MANY questions. Im at early stage Lichen Sclerosus. I have one lightly colored spot on my labia minora and have itching, but not the intense itching most describe. I do catch myself scratching in the middle of the night, which sucks because you cant control sleep scratches!

im 36 years old mom.

anywho.

question 1: how quick does lichen sclerosus progress?

question 2: Does everyone who has it end up fusing and losing their womanhood, even with treatment?

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?

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?

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?

question 6: if i dont scratch, will i still get scarring?

question 7: if i continue to have sex, will it prevent my vaginal hole from skrinking?

question 8: will this get worse or better once i hit menopause?

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?

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.

question 11: are there any stories of women who have a mild case and it never progesses to anything worse?

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??????

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  • Posted

    Start taking high level of Vitamin D3 and K2, Magnesium and all the rest that I've found online that is in deficiency with autoimmune diseases.  The article I've posted shows that some of the nutritional supplements also take care of depression and anxiety

    https://patient.info/forums/discuss/nutritional-support-protocol-for-autoimmune-diseases-636963

    I know that's a bait heady.. but will give you the foundation to Not be scared, but to get proactive. 

    AUTOIMMUNE NUTRITIONAL SUPPORT

    amounts are appropriate ratios of cofactors to the baseline of Vitamin D3 at 5,000 IU 

    _ 8 GLASSES of WATER EVERYDAY; one glass with Borax/Himalayan Pink Salt 

    _ EIGHT hours of SLEEP every night

    INDEX: Here’s the WHAT to take:

    BREAKFAST that includes fat

    _Milk Thistle

    _Grape Seed Extract

    _ sauerkraut or kimchi or probiotic supplement, a tablespoon of at most meals

    _ Vitamin A, 15,000 IU (if taking Vitamin E, which aids absorption of A, ratio is 5:1)

    _ Vitamin B Complex Super 100 (or less if better for you)

    _ Vitamin B -12, oral spray for best absorption

    _  Folate 800 mcg or about methylfolate, (NOT Folic Acid) Solgar has one

    _ Vitamin C, 500 mg with bioflavonoids

    _ Selenium, 200 mg

    MIDDAY not within about an hour of other supplements: if you have time

    MSM (MethylSulfonylMethane) Powder works better than pills  

    Alternate with GTF Chromium or take ½ hour after MSM

    DINNER that includes fat

    _Vitamin D3, 5,000 iu liquid drops

    _Vitamin k2 about 600 mixed types

    _ Magnesium, ~1,000 mg in divided dosage

    _ Zinc 30+ mg

    _ L-lysine, 500 mg or more

    _Omega-3 Oil EPA/DHA (Nordic Naturals is nice – but what can find)

    1-hour before bed: MELATONIN 3 to 12 mg Use intuition, gotta get 8 hours of sleep!

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  • Posted

    Hi I am 35 years old was diagnosed around 3 months ago although I believed I exactly had LS for 2 to 3 years prior to this. Firstly I have had times when sex as been painful or impossible due to pain but since I have been given the steroid cream and cocunut oil 3 times a day that I still have good sex , ok sometimes we have to change positions if I'm hurting in a particular area like at the mo I can't go on top but once I use the creams more and more I know I will beable too because last time I hurt from behind positions but kept applying creams and now I have no trouble in that area. I also worry about what will happen after menopause

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  • Posted

    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.

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    • Posted

      Wow, thank you!

      I know i wrote and asked alot so i really appreciate you taking the time to go through each question and answer them individually. I got all teary eyed reading your response.

      Your reply was very encouraging and it really does help to read positive responses. It helps take away some of the anxiety and fears. i suffer from generalized anxiety and it spikes when anything health related pops up. This anxiety never happened until after i had a kid. i fear being in pain and miserable and not being the best mom. i fear leaving him. i fear alot of things LoL. so again, thank you.

      my favorite response was you saying "im still enjoying my life very much!"

      i think that is the purpose of life. To enjoy it.

      I am happy for you and i enjoy my life too. i hope to continue that for forever.

      Happy friday, and enjoy your labor day weekend.

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    • Posted

      I’m so glad it was helpful! I’m happy to help. This group was a huge resource to me when I was first diagnosed. We’re all figuring this out together. smile 
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  • Posted

    question 1: how quick does lichen sclerosus progress?

    It varies, although I believe it accelerates for some women after the menapause.

    question 2: Does everyone who has it end up fusing and losing their womanhood, even with treatment?

    Fusing is quite common with LS, using an oil before bed is thought to prevent fusing.  No one loses their womanhood.

    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?

    Sometimes when someone with LS flares they can have sores/cuts and then it is best not to have sex until it has cleared up.  If you are not experiencing any pain or soreness it is fine to do whatever you want to do in the bedroom.

    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?

    Once you know how to manage LS and things to avoid, life carries on as normal for most of us.  This is not a death sentence and there are worst things to have.

    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?

    Not every doctor/or article states that you must continue to use the clobestol for maintenance.  It is a personal decision and some women prefer to just use the cream when flaring while others prefer to use it perhaps weekly.

    question 6: if i dont scratch, will i still get scarring?

    Everyone reacts differenctly but it is not a good idea to scratch, I have always managed not to.

    question 7: if i continue to have sex, will it prevent my vaginal hole from skrinking?

    It will definitely help to prevent your Vjay from becoming smaller.

    question 8: will this get worse or better once i hit menopause?

    I think for some women it can accelerate and become worse.

    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?

    Well, I'm living my life and enjoying it and still married.  Admittedly I am not having sex. I'm 56 and whilst it is not an ideal situation I have accepted it.   The key here is to use dilators regularly if you are not having sex regularly.  I did not do that which is why I cannot have sex.

    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.

    How old are you?  You do know that women go into remission regularly with LS?  I think I have had it all my life now that i look back and I certainly remember having sex regularly and so it comes and goes.

    question 11: are there any stories of women who have a mild case and it never progesses to anything worse?

    I think if you catch it early and know how to manage it you can keep it in abeyance for years

    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??????

    Always use a good lubricant when you have sex.  Honestly, men dont notice what we notice.  I doubt whether he would be able to tell if your labia minora shrank or not.  When i realised my LM was disappearing I wasnt happy,  but I have other health issues and thats what put it into perspective for me.

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    • Posted

      Thank you so much for being so open and honest about your situation.

      Your answer to question #9 and the last paragraph really sank in for me and i appreciate you taking the time to answer each of my questions... it really does mean alot for newbies who are just desperate for answers about real life stuff, not so much the treatment aspect.

      I am 36 and i do not/did not know that you can go into remission for certain periods of time. It was appearing to be something that was ongoing all the time and just got worse and worse. So thank you for clearing that up for me, as that was a concern.

      I also have other rare health issues that have no cure and require intensive treatments, which is why this was just icing on the terrible cake.

      I was nervous to post all my questions as i didnt want to come off as naive or rude, but im glad i did. The reponses to my questions have been a godsend. And i am forever grateful. Thank you!

       

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