Can You Miss What You Never Had?

I am 20 years old (female), I was diagnosed with vulvar and anal lichen sclerosis when I was 7...I have Lupus so that might explain it. Now that I'm an adult I want to start dating but I have a serious dilemma, I can't have sex! I have tried about 4 times and have ripped and tore severely. It is too painful and it is humiliating! It is so frustrating, I cannot even get aroused when being with the opposite sex the thought of him making "a move" terrifies me. I have tried dialators, stimulator treatment, and steriod cremes nothing has helped this problem. And to top it off, I was recently raped and badly damaged down there, so that adds more fear because off the excruciating pain I was in. I'm trying to move past that, but how? I don't feel comfortable getting into a relationship because I cannot have sex and that is a part of a healthy relationship. How will I ever get pregnant?What man would want to date me? Everyone tells me a good guy won't mind, but seriously everyone has sexually desires its a part of life. I'm starting to wonder if maybe surgery would help me? I've never had sex, so can I miss what I never had?
ALifeLost ALifeLost
18-21, F
4 Responses Dec 2, 2012

As a guy married to a woman with LS, I would like to offer another point of view. And I would offer to you, as well as the other woman that have responded to this thread, that I am more than happy to take a discussion "offline."

Clearly, having LS significantly impacts your life and creates a new perspective (that you probably weren't too keen on getting). And I would never undermine the impact that it would have on your life. You may notice from my profile that I have turned EP into a fantasy world that gives me an outlet for what I am missing at home. However, understand that in my world, the real issue is not the LS. Unfortunately, my wife has made LS "her" issue where I perceive it to be "our" issue. To a large extent (although not entirely), I do agree with CanadianMaple that your partner needs to be able to work with you on it and it needs to be an "our" problem -- something that you deal with as a couple. By alienating me, LS has grown into a much deeper and much larger problem in our marriage and it is entirely without any intimacy. At this point, I don't think that our marriage will survive, but it is not because of the LS -- it takes sexual experimentation, empathy, and persistence but I do believe that you can work through it as a couple.

Again - anyone wanting to connect and talk individually is welcome. Heaven knows that my world is turned upside down and I feel alone in this too.

I feel your pain loud and clear, I too have LS and it is amd has been ruining my life. I'm 31 and I've had it for about two years. Husband repeatedly cheated, so i had to leave him, had to quit my job and move home to care for my dying father. I live in Newfoundland, Canada an most of the many MANY doctors here diagnosed me with chronic yeast infections. I've lost 30 lbs and my hair is falling out from stress. My family does not want to talk about it and I've made several half hearted attempts to commit suicide. So there's my rant, I just had to tell someone because I feel like I'm totally alone. I hope you all go into remission and I'm sending you all my love because I know just how you feel.

It must be really hard for you as without that special someone in your life to take it slow with you helping building your confidence in learning what hurts and what doesn't must be a scary thought for you. If a relationship is not what you are looking for at the mo then maybe purchasing a very small and thin vibrator may help as you will be in control of it.
I agree with another reply to your blog that there is lovely guys out there and filtering out he bad guys will be easy, those too scared are too immature to deal with complex healing path you are on. I have only just started liking sex again after 2 years of pushing my boyfriend away. It has been hard as I didnt want to kiss him or show him any love as i did not want it too lead to sex as it would hurt so much, the hardest part was needing to practice in little baby steps and his total shutdown saying whats the point it will be rubbish anyway. Since asking the GP for a product called instagel (a numbing lube) I have come leaps and bounds. It will take years of practice and having the confidence it will not hurt when using a vibrator or having sex. With your situation I cannot imagine how hard it must be to try. Meeting a nice man in the future would be great for you though only once your ready and yes there are nice men out there. My boyfriend is only 29 and has spent most most of our relationship without sex for some reason or another, You will find your prince. Good luck and remember baby steps x

Hey there! Try not to freak out too too much. I've has LS since I was a kid but it's gone undiagnosed since it recently took turn for the worst these last few months I've been pregnant. I'm 23 (so yah, we're not all post menopausal) and my husband and I just thought I tore a lot during sex, which prompted me to go see my doctor finally. I never had too much itching until I got pregnant. It's an autoimmune disease, and apparently 1/3 of them get worse during pregnancy, which explains a LOT.
Regarding your future relationships, it's something we all kinda have to deal with when the issue of sex arises. My husband is amazing and supportive, and any guy worth marrying and starting a family with for you will be just as great. It's actually kinda nice to have it in place as a test! If they fail, leave them. That simple!
We still have sex....not NEARLY as much as either of us would like! But enough. Just make sure you use a TON of lubricant and lots of foreplay. Trust me, just because you haven't really had a good sexual experience doesn't mean you should become a nun! :P
Keep in mind there is a stemcell treatment available with great success rates in Italy and California. It's roughly $6000 but sounds worth it to me! I'm in Canada so we're making a trip to cali after the baby is born. I'm willing to try anything!
Good luck and hold your head high!

Hello! Thank you so much! You made me feel a lot better... im just getting the hang of this website lol i didn't know if anyone would reply :-) But yes LS does have an advantage because only a good guy would understand.