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How to have BETTER sex even though you have Lichen Sclerosus.

How to have BETTER sex even though you have Lichen Sclerosus.

Just a quick warning, I will be talking about sexual things. If you are sensitive to that I completely understand but this may not be the blog for you.

I also want to set proper expectations. Lichen Sclerosus has many symptoms and progressions. Unfortunately, there are too many and span too many degrees for me to cover in one article. This piece will focus on women who do not suffer from severe fusing or other sexual complications that may require surgery.

To honor you that are suffering these awful symptoms, I hope to bring in someone knowledgeable about these cases. I do not feel comfortable speaking on it because those are not my experiences and I am sensitive to your plight.

Does Lichen Sclerosus Affect Our Sex Life? 

How does having Lichen Sclerosus change our sex life? How do we talk to our partners about sex? What can we do to make sex better when we have Lichen Sclerosus?

What Does the Science Say?

In 2014 the Journal of Women’s Health published a study done by the University of Michigan Health System titled “The Impact of Vulvar Lichen Sclerosus on Sexual Dysfunction”.

They studied 337 women divided into three groups one group had valvular Lichen Sclerosus, one chronic yeast infections, and the last was completely healthy. The women were of various ages, races, relationship statuses, and social-economic situations.

The study concluded,

Women with Lichen Sclerosus suffer from a greater degree of sexual dysfunction than both healthy women and those with Candida infections…Women with Lichen Sclerosus have less frequent sexual activity and less satisfying sexual activity when compared with controls.

How Does Lichen Sclerosus Affect sex?

There are four main ways Lichen Sclerosus affects our sex lives. 

Pain

Lichen Sclerosus makes our vulva skin thin. This makes us susceptible to tearing. If you have ever touched an open sore you will understand the pain it causes. Now imagine sliding your finger over and over across that sore with varying degrees of pressure, that’s how sex can feel when you have LS.

The friction of rubbing the skin can also cause burns. Rub your hands together. Feel your skin get hot. Now think about how that would feel if the skin on your palms was paper-thin. It would be manageable but not pleasant.

Let’s not forget the pain of having sex when you have fissures, blisters or tears already, sex just amplifies that pain. Sometimes we force ourselves to have sex because our partners want to and we do not want to deny them, either out of love, obligation, or because we desire them as well. This is not healthy for us mentally or physically. Continuing to have sex when we anticipate pain can lead to vaginismus (the contraction of the vagina muscles when approached by something trying to penetrate it), which will lead to more complications.

Women who have partial fusing of the labia may find that their capacity to be penetrated is greatly reduced and will feel pain if penetration is forced. Some may not know that their opening is smaller because they do not look at their vulva. They run the risk of tearing and causing greater damage as well.

Libido

Our desire to have sex or libido is closely tied to our self-esteem. If we do not feel worthy, desirable, or sexy our libido will lower drastically. Our lower self-esteem will have us questioning ourselves. Does my partner still desire me? Do they still find me sexy? What if I can’t perform the way I use to?

All these question race through our minds causing anxiety. Stressing us out and leading to fear. Fear of not being good enough. Fear of losing our relationship, on top of the fear sex will hurt again.

Mentally and Emotionally

All of this anxiety and self-doubt can manifest mentally and emotionally. We can start withdrawing because we don’t want to get hurt, emotionally and physically. Our minds can play tricks on us. Things our partners do could be misconstrued as signs they no longer desire us because we already question ourselves.

Physically 

Our physical body plays a big part in our sex life. If we are having an outbreak or have fissures, blisters, or legions we are less likely to want to have sex (see pain). If you are suffering any type of atrophy (fusing) your hole may be too small for your partner to penetrate you. Forcing sex in any of these contains can cause vaginismus, creating another complication to a healthy sex life.

How Do We Talk To Our Partners About Sex and Lichen Sclerosus?

Long-term relationship

Easiest to deal with because

  • You have been together for a long time
  • Have a shared past
  • Sex is probably not one of the most important things in the relationship
  • Strong emotional and spiritual connection
  • You have probably spoken about Lichen Sclerosus and your symptoms so they understand

New relationship

A little harder because

  •  You haven’t had as many life experiences with this person
  • May not know how committed you are
  • Might be unsure how important sex in the relationship is to your partner
Two people with brown skin hugging each other. Having a new relationship with Lichen Sclerosus can be nerve wrecking but it doesn't mean you can't have better sex.

Dating

Could have it the hardest because

  • You have to decide at what point you tell your partner about Lichen Sclerosus and how it can affect your sex life
  • They may not believe you and think you are hiding an STD
  • Might not want to commit to a relationship where there could be stretches of time they can not have sex

In all of these situations, you have to take into account the level of the relationship and maturity of the person you are dealing with. If you haven’t explained what Lichen Sclerosus is yet, tell them your symptoms, and the symptoms in general. Use my episode on symptoms as a resource if you need it. If they are more of a visual person I have a YouTube video as well. Tell them how you feel mentally and emotionally as well. Let them support you.

Be open and honest. Let them know what the disease looks like if it progresses. They may have a lot of questions. Answer them but try not to overwhelm them or yourself. They have to commit to taking on your life sentence if they decide to stay with you. If they can not stand by you then it’s better you find out now than later.

How Do We Have Better Sex After Lichen Sclerosus?

There are ways to make sex enjoyable even with Lichen Sclerosus. The biggest tip I found was to use hypoallergenic lubrication. Coconut oil was recommended as a natural lube, although I have never used it.

You can also find new ways to bring intimacy into your relationship. If you are unable to withstand your usual foreplay, like me, get creative and come up with new ways to get each other in the mood. It may have to be more verbal and visual rather than physical. You could also bring in soft toys you can tolerate better.

Experiment with new positions that do not require as much penetration. Communicate with your partner. Let them know what feels good and what hurts.

Conclusion 

Lichen Sclerosus can affect the quality and quantity of sex. It can change how we look at ourselves and sex. Low self-esteem can cause us to question ourselves and our partners. Pain during sex can lead to fear, making us shy away from wanting sex.

We have to communicate with our sexual partners. Explain the pain, lower libido, anxieties, and lower self-esteem. Let them know how the amount of and the act of sex could change in the future. Come up with a plan on how we will navigate that change.

Let them help us come up with new ways that will keep sex satisfying. Find new ways to entice each other. Use lubrication if needed and try sex with minimal or no penetration.

If all else fails there are more aggressive treatments such as laser or stem cell injections. I have not researched them yet but will be doing so in the near future.

If you have any other tips for improving our sex lives while we suffer from Lichen Sclerosus please send me an email or click the teal button on the side and leave me a voicemail. I would love to hear from you. If you found this helpful and think someone else would as well, please use the buttons below to share.

Have an amazing week!

Resources:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4158972/

15 Comments

  • hannah2082

    Awww love you. I do get pins and needles around that area when I’ve been sitting for too long. Sending love and feel for you. Love your podcasts and thank-you for doing this.

  • Kelly

    I just read your article. I was diagnosed with lichen sclerosis, a year ago. I have had two biopsies. I am miserable. I have flare up’s. And it is painful to have intercorse. . It has caused much friction in my sexual life with my husband. I don’t have the urge to have sex because of the pain. I appreciate the information you provided. It is not an easy subject to talk about. Thank you for your time. Thank you for your understanding. Lichen sclerosis is a horrible, embarrassing situation.
    K L

    • Oh Kelly I’m sending you so many hugs. I completely understand. I hope you start finding relief soon. Hopefully our other resources on treatment, sexual wellness, and pain can help you get to a place where sex is pleasurable again.

  • Caroline

    Thank you for sharing this, I found it comforting to know I am not the only one who experiences this. I was just diagnosed with LS last week. I find it difficult and feel so bad for my partner, as we have always had a great sex life together but now I just can’t do it anymore because the pain is so bad and tears I get every-time 🙁 he is very understanding but it can really effect you mentally!
    I am researching all I can and trying to find a way to make it better so thank you again for sharing this blog & information! Sending lots of love x

  • Thank you for posting such an informative on LS. I was diagnosed two years ago. Having intimacy/sex is very painful. Even sitting too long, I experience pins and needles. My husband is very understanding, but I still feel bad about the situation. I would be interested to find out about laser therapy or injections. Thank you again.

  • Katie

    I have had LS for years now and even a stem cell treatment $10,000 out of pocket because no insurance will even discuss covering it. While it did help for awhile the symptoms came back and with a vengeance and was told it could need 1-3 treatments total. Well I don’t know about anyone else but I can’t afford $10,000 two three times.

    The itching is out of this world. I have an extremely understanding husband and thank goodness for that!

    Women with LS go through A LOT and it needs to be more understood. We don’t have to let the embarrassment take over but that’s hard to do. Talk about it with your partner so that it gives anyone the information to see and feel what we are going through. The more you talk and get empathy it’s a little easier to deal with

    • So sorry you’re going through this. Unfortunately stem cell treatment has been shown to be an ineffective treatment.

      I agree, an understanding partner is a godsend. Communication is key.

      Have you seen this article? lssupportnetwork.org/drjill I’ve been in remission going on two years following this protocol with my ultra-potent steroid. We also have a provider directory where you may find another provider. lssupportnetwork.org/providers

  • Tony Cummins

    My name is Tony I found out I had lichen sclerosis about 4 year’s ago. I found out most women have it and it’s rare that men get it but we do unfortunately. My heart goes out to anyone that has lichen sclerosis. I’ve heard these Lady’s telling there stories and my heart goes out to them. I pray than can find a cure for this. I will keep on researching everything I can about it my self. I’m Wishing everyone the best in there journey with this lichen sclerosis.!!!

    • Thank you tony! As we grow and are able to hire more researchers and writers we will start adding resources for penial LS. I hope you find the information and support you need.

  • Elisabeth

    I am one week into my first flare. I have Hashimotos and alopecia so I guess my body decided I needed some “razzle dazzle” of an auto immune disease to round it out. The pain has been more than expected. Even only having my first flare and only a week into it, my vaginal opening has shrunk enough that when I had sex (it was the beginning of the flare and I had no idea) the pain caught me off guard! I also have a raised line of flesh on my perineal area that goes to my rectal opening and none of that was there the last time I looked – probably 2-3 weeks ago. Do these adhesions/ raised bands of flesh connecting areas normally happen this fast? Also- I’m having a VERY difficult time telling my partner. We’ve been together 3 years and are very much in love and he is so supportive of me…. But he is 20 years younger than I. He is a mature loving old soul that treats me like a goddess… but I would be lying if I said I’m scared to tell him. Scared he will not be as sexually attracted to me. Or as sexually free with me. Our intimacy is very important to us both. I feel damaged

    • I’m so sorry this is happening Elisabeth. Skin changes can happen quickly or take a long time to develop. I encourage you to see your provider. You may need a more aggressive treatment plan to halt the skin changes. There is a chance you may also need surgery to reverse them. Check out this article on skin changes. Architectural Changes & Lichen Sclerosus – https://lssupportnetwork.org/architectural-changes-lichen-sclerosus/

      I also encourage you to speak with your partner. Chances are he loves and adores you for who you are and the sexual intimacy is just a manifestation of that not the reason. He will probably want to take care of you and support you in your healing journey. Communication is key when dealing with anything but especially chronic illnesses. You don’t want let his mind run wild when you make excuses for why you don’t want to have sex.

      Make sure you come to the upcoming Wholistic Healing Summit. We’re going to be diving deep into LS, partners, and disclosure.

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