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Is Lichen Sclerosus Lowering Your Sex Drive?

Is Lichen Sclerosus Lowering Your Sex Drive?

*Just a quick warning, I will be talking about how Lichen Sclerosus affects our sex and sex drive. If you are sensitive to that, I completely understand, but this may not be the blog/podcast for you.

**Another caveat. This episode is geared towards women with moderate to mild Lichen Sclerosus and not for those with severe Lichen Sclerosis (i.e., those with fusing across the vestibule/vaginal opening) or those with vaginismus or vulvodynia.

I’m excited to bring some fresh insights to the podcast after our Lichen Sclerosus virtual meet up.

As many of you living with Lichen Sclerosus already know, Lichen Sclerosus can negatively impact our sex drive; sometimes it stops it all together. This week we dive into the topic of Lichen Sclerosus, how it can lower our sex drive, and, most importantly, how we can become empowered to get it back!

During our Lichen Sclerosus Virtual Meetup, I discovered a trend – 88% of us weren’t having sex and most of us suffered from low or loss of sex drive. That’s a large percentage, and it makes sense! If our libido is low, we probably don’t want to be having (a lot of) sex.

Sex Drive and Lichen Sclerosus

Our libido is our sex drive – our desire for sex.

Experts agree our sex drive naturally fluctuates throughout our life. This is contingent on many factors: age is one. As we age, our libido tends to trend downward. According to Menopause.org, women’s libidos drop around the late ’40s to 50’s. Other aspects such as medications (e.g., anti-depressants, anti-psychotics, pain medication, etc.) can affect our sex drive.

However, Lichen Sclerosus affects our libido in a different way. It is not necessarily related to age (as many of us with Lichen Sclerosus are in our teens, 20’s, and 30’s) or medication (not everyone with Lichen Sclerosus is on medication).

Hope et al. (2014)’s paper ‘The Impact of Vulvar Lichen Sclerosus on Sexual Dysfunction’ concluded that women with Lichen Sclerosus not only had less frequent sex than women without Lichen Sclerosus but that the women that had sex with Lichen Sclerosus reported that it was less pleasurable.

Conclusion: Women with LS have less frequent sexual activity and less satisfying sexual activity when compared with controls” (Hope, 2014).

My own Anecdotal Research

As I chatted with the ladies in the Virtual Meetup, we suspected our low libidos likely had two main contributing factors: a hormonal component and a mental component.

I did my own unscientific research by polling my IG followers. (If you aren’t following me already on IG, you can find me @lichensclerosuspodcast to participate in future polls and discussions).

I began by asking if Lichen Sclerosus affected their libido. Of the 47 answers I received, 39 said yes, and 8 said no. That’s 82% of people saying that Lichen Sclerosus impacts their libido – this percentage is consistent with the percentage from our Virtual meetup, and that’s a BIG percentage!

I then asked whether they thought their libido was impacted by hormones, mental health, or both. Of the 26 responses I got, 14 said mental, 11 said both, and 1 said hormonal. So let’s look at the hormonal and mental components in more detail.

Hormones and Sex Drive

Hormones, such as estrogen, progesterone, and testosterone will determine whether you have a high, moderate, or low libido. An imbalance in any of these can lead to reduced libido.

Some research says there may be a hormonal component to LS – and indeed some of the women I spoke to definitely seemed to be affected by their hormones in that their cycle impacts their flares. Unfortunately, to date, there is little research on the relationship between hormones, Lichen Sclerosus, and low libido/sex. Therefore, to any researchers out there reading this, please consider investigating this! We need your help!

Mental Health and Sex Drive

Image of person lying on their bed, hands covering their face, representing how alone and scared many individuals feel with a LS diagnosis.

Importantly, in the poll, 14 out of 26 answers claimed their low libido was mental, if we add the other 11 that said hormonal and mental, then 25/26 think there is a mental aspect to their low libido. Let’s explore this a bit further before I offer 5 tips for revving up our libido and taking back our sex lives!

The mental component of our sex drive is tied to our subconscious. Our subconscious mind is in control of 90-95% of what our body does. The body's digestion, heartbeat regulation, breathing, etc., this is all controlled subconsciously. Our subconscious not only controls our bodies but our minds, as well; it is there to protect us and keep us alive and safe.

When we experience a threat such as pain, subconsciously that painful experience is coded as ‘danger’. When we find ourselves in a similar experience, our subconscious rings the big ALARM bell and we go into fight or flight mode.

An Analogy

When I started exercising, I began with the goal of walking 1 hour, 3 times a week. After 30 minutes on the first day, my legs felt like they were going to buckle. My heartbeat raced. I was sweating profusely. I started to feel like I couldn’t walk anymore like I needed to give up and go home. My subconscious was making me feel like my body was in danger, but in actuality, I was not in danger, my body just wasn’t accustomed to exercising. So what did I do? I kept going, I pushed through, and I survived; I was OK. Every time I went for my walk it became easier because my subconscious learned that the exercise was not a threat, there was no danger, and in time it began to help regulate my heart rate, breathing, etc.

Image of person running outdoors representing Kathy's determination to push through and reach her goals.

The Moral of the Story

Our subconscious works the same way with our libido! Therefore, when we experience pain during penetrative sex, or tear and burn afterward, our subconscious codes penetrative sex as painful tells our bodies, “next time there is a similar situation there will be pain, and I don’t want my person in pain, so I’m going to lower their sex drive”. Accordingly, our mind creates an obstacle for our sex drive.

What Can We Do To Improve Sex Drive?

In our Virtual Meetup, I discovered that the primary driver behind the mental component of low sex drive was FEAR. Fear of tearing, of pain, of causing a flare. Fear was also frequently brought up by my IG followers.  

I now want to offer 5 tips for moving past the fear, and empower us to take control of our libido and get back to having healthy, pleasurable sex.

Image of a couple's feet under the sheets of a bed, symbolizing the possibility of a healthy sex life with LS.

5 Tips for Re-programming the Brain to have Healthy, Pleasurable Penetrative Sex

  1. You don’t need to figure this out alone. Find a support group and/or community, listen to their success stories, and let that give you hope and guidance. Let those voices overpower your subconscious voice. Sign up at lssupport.net/connect – join our support network and be a part of our growing, lively, and compassionate group of Lichen Sclerosus warriors and work through this with us. Get support on your journey.
  2. Be real about how you feel; you can’t change what you don’t acknowledge. If you’re afraid it’ll hurt, acknowledge that. If you’re afraid it’ll spark a flare, acknowledge that. Imagine the worst-case scenario with having sex and then create a plan for how you’ll deal with it. For example, if your fear is it will cause a flare-up, know you have a protocol to follow when you flare. Therefore, if you have sex and you do have a flare, you just have to implement that protocol. If your fear is that your partner won’t be able to penetrate you, have a plan to work on creating space and getting comfortable with penetration (e.g., try using dilators and/or vibrators).
  3. Self-care and masturbation are key: take care of yourself, try masturbating. Get to know your body again, slowly, gently, and patiently. Learn what your body likes, what it dislikes, what hurts, and what feels good. Experiment with pushing past some discomfort; remember, your subconscious has put up barriers because it thinks you aren’t safe. Slowly teach it that you are safe by pushing past the limits a little bit, but be safe and gentle with this. Of course, do not do this if you have a tear/fissure.
  4. Face your fears and train your brain to stop the fear response. If you’re afraid it will hurt, try using a dilator and see how it feels. Furthermore, get your body used to something entering it, and if it doesn’t hurt you, remind yourself by actively saying to yourself “this didn’t hurt “or “this felt good”. Reinforce those good, pleasurable feelings. If you’re afraid of tearing, use a ton of lube (way more than you think you need). Test your limits mindfully. Get your partner to join so that they get a better understanding of what feels good, what is off-limits, etc. Reinforce and celebrate your victories, however small or big they may be.
  5. Look at the evidence and be realistic with it. You tried penetrative sex – what happened? Document how you felt physically and emotionally after, note what was successful, and what wasn’t. Use this information to plan for next time; it may mean more foreplay, more lube, a different position, etc. Decide when you will try again, pick a date, and be committed. Be gentle, have fun, but also commit to it.

Review

In conclusion, let’s review key ways to get our sex drive revved up!

  • 1. Join a group and get support.
  • 2. Be real about how you feel and have a plan.
  • 3. Practice self-care and masturbate.
  • 4. Face your fears and have a plan.
  • 5. Look at the evidence and adjust your plan accordingly.

Repeat steps 2-5 and discuss it with people from 1. Don’t have a support group? Come join us – let us be your people! Join us at lssupport.net/connect.

Do you have a low libido, do you think it’s hormonal, mental, both? Let me know, DM me on IG @lichensclerosuspodcast, FB @lichenscleorussupportnetwork, or email Kathy@lssupport.net.

See you February the 5th, 2021 when the first episode of season 2 of the podcast will air! Subscribe so you are notified when I’m back! Sign up for our virtual meetup!

The Podcast is also available on YT and your smart speakers – search for Lichen Sclerosus Podcast and follow me there.

Resources:

By Jaclyn

I am the author of The Lost Labia Chronicles, a blog about Lichen Sclerosus, Sex, and Mental Health. I was diagnosed with Lichen Sclerosus in 2019 but had been symptomatic for over a decade. My mission is to provide support and hope to others with Lichen Sclerosus.

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