Fear and the Power of Education

Introduction

In my last blog post, I highlighted the different types of fear you might experience after receiving a Lichen Sclerosus diagnosis. Catch up by reading that post here. In this post, I’m going to start tackling those fears by breaking them down and providing you with practical tips you can use to dim the switch on your fear(s).

Moreover, a recurring theme will be the power of education. Specifically, how empowering yourself with evidence-based information can help soothe some of those fears. It doesn’t end there, so buckle up because we’re in this for the long haul! This is the first installment of a two-part series that examines the different types of fear people with LS experience. This post focuses on the fear surrounding relationships and sex. Part two explores the physical fears a Lichen Sclerosus diagnosis can bring up, like the fear of developing vulvar cancer; read this post here.

If you struggle with mental health on your Lichen Sclerosus journey, be sure to read this post here on progress, expectations, and Lichen Sclerosus.

Don’t forget to read until the end for this post’s #TLLCTuesdayTip!

A Caveat about Fear

None of the advice I provide is meant to completely eliminate your fear(s). If it does, great! But realistically, there’s no quick fix to get rid of all our fears about Lichen Sclerosus, especially in a short time frame. I believe in a more realistic approach, where you try and dim the lights to lower the intensity of the fear(s) you are feeling. In time, while working with these tools, I hope you can continue softening your fears surrounding Lichen Sclerosus.

Further, don’t forget, we are all unique and have different backgrounds. Thus, what works for me or others may not work for you, and that’s okay. As always, take what serves you and discard what doesn’t resonate or sit well with you.

Fear about Relationships, Intimacy, and Sex

One fear you may have is what Lichen Sclerosus entails for your current relationship(s) or future relationship(s). This is a completely valid fear. It is and one that I carried for quite some time (despite having a very understanding and compassionate partner).

Fear and Current Relationship(s)

For example, my husband was incredibly compassionate, but I was worried about how Lichen Sclerosus might affect us long-term. Sure, maybe he could go without sex for a few months, but what if I can never have sex again? What if my Lichen Sclerosus symptoms just get worse and I’m super miserable? Moreover, what if not being able to have penetrative sex affects him and causes problems in our relationship?

If I could go back in time and give myself some advice, here is what I would say:

Educate yourself on what it means to have and live with Lichen Sclerosus. Find resources and people who are educated about Lichen Sclerosus and it’s impact on your sex life.
Read the literature on Lichen Sclerosus. Once you do this, you will learn you can eventually go into remission with consistent and optimal steroid use.
Pelvic Floor Physiotherapists are your friend! If you are able to, book a session with one so they can work with you to curate personalized programs to help with painful sex. If you cannot afford a pelvic floor physiotherapist, there are tons of them on Instagram! Many of them have Instagram and Youtube where you can find tons of free content and advice. There are also some great books by pelvic floor physiotherapists that can be quite helpful. (Message me on Instagram if you’d like suggestions on who to follow).
Get a therapist, preferably a sex therapist or therapist that does couples counseling and seek therapy alone and/or as a partnership. I cannot stress enough how helpful therapy with the right therapist can be when confronting our fears about Lichen Sclerosus.
Educate your partner(s) on Lichen Sclerosus. Talk to them and give them articles, blogs, podcasts, etc. from credible sources so they can learn more about what you are dealing with.
Have multiple heartfelt and ongoing discussions about where you and your partner(s) are at emotinally with respect to processing and dealing with your Lichen Sclerosus diagnosis.
Write down your fears and talk to your partner about them. You may be able to come up with a plan of attack to address those fears together.
Take the time to re-learn your body. Explore different sensations and toys. If you need help with this, consider booking a session with a sex educator. I highly recommend Celina, who also has LS and works as a sex educator (see her information in the resources below).
Use this time as a space to explore each other again on an intimate level. Again, working with a sex educator can be helpful.

Fear about Future Relationships

This one is a bit harder for me to talk about because I was diagnosed after I got married. If you have Lichen Sclerosus and have fears about how it may affect future relationships, or you had some fears but found a partner and you want to share your story and advice, feel free to contact me. I would love to feature you and your story on The Lost Labia Chronicles as a guest. It would be wonderful to have advice from someone who experienced or is experiencing this fear.

In the interim, here are some things I would suggest for dealing with fear about the potential for future relationships.

Educate yourself on what it means to have and live with Lichen Sclerosus. Find credible resources and people who discuss sex and Lichen Sclerosus.
Take this information and draft a mini conversation you would have with a future partner. Be sure to explain what Lichen Sclerosus is, that it isn’t contagious, and how LS could affect your sex life. Don’t forget to ask them how they feel about it. Communication is key in all relationships and navigating a relationship (or potential relationship) with Lichen Sclerosus is no exception.
Know it is possible to turn the tables around and have pain-free sex. I experienced painful sex for most of my sex life. Educating myself on how to best take care of my LS, using dilators, and going to therapy, played a major role in my LS journey. I have been having amazing, pain-free sex for over 6 months now, so know there is hope!
Find a support group and Lichen Sclerosus community. There are so many people out there in a similar position as you, facing similar fears. Talk to them about it. Discussing our fears about LS can be cathartic and, for some, it helps not feel so alone in their struggles.
Consider seeing a sex therapist or relationship counselor. They can help you process any fears and emotions about starting a relationship with someone new when you have Lichen Sclerosus.
Use this time not only to educate yourself about Lichen Sclerosus, but use this as an opportunity to focus on loving yourself. If you aren’t sure how to go about this, consider online workshops, there are so many workshops out there focusing on self-love. One I would recommend is a workshop called ‘Divine Feminine Activation’ by Nira Lall (who also has LS). I attended this workshop in the spring and found it incredibly healing. Her information will be in the resources section at the end of this post.
When you aren’t in a flare, re-learn your body by masturbating. Learn what feels good and what doesn’t so you communicate it to future partner(s). Not sure about masturbating with LS? Consider booking a session with a sex educator. I highly recommend Celina who is a sex educator and also has LS (her info will be in the resources below).

General Advice for Dealing with Fear Related to Lichen Sclerosus, Sex, and Relationships

Education

Education is so important. Learning how to properly take care of your Lichen Sclerosus and learning that sex is still possible (some modifications may be needed) helps take some of the pressure off. Let me know in the comments if you’d like to see a post on modifications for sex with Lichen Sclerosus because this is something I have experimented with and would love to share.

Communication

Communication is key in ANY relationship. Being able to properly communicate how you are feeling, where you are physically and mentally is important. So is being able to articulate what you need from your partner(s) is so important. Of course, communication becomes easier when you are educated about Lichen Sclerosus because you are better equipped to answer their questions and concerns.

Therapy and Support Groups

Seeing a counselor or therapist can be helpful. However, I acknowledge this isn’t an accessible option for everyone and that not everyone can go see one. If this is the case, I suggest looking into virtual therapy and free resources online.

Find a support group, especially if therapy isn’t available to you. While LS support groups are not a replacement for therapy, they are a safe and brave space to discuss your fear(s) and ask for support and advice from others with LS who have lived experience. There’ll be a link at the end for the virtual meetups hosted by Lichen Sclerosus Support Network held every two weeks.

Podcast

Further, if you want more advice and discussions about relationships and Lichen Sclerosus, check out Kathy’s Podcast Episode (Lichen Sclerosus Podcast) entitled ‘How to Still Have a Great Relationship With Lichen Sclerosus’ here.

Also, if you would like to listen to a story about someone with LS that found love after being single for some time, listen to this podcast episode about Carrie Bock’s story here.

Important Reminder

And finally, remember that you are so much more than Lichen Sclerosus. You have so many beautiful pieces – physically and mentally – that go beyond Lichen Sclerosus.

You are worthy of love, compassion, and respect.

Conclusion

In sum, communication, education, and support are critical pieces to lessening the grip fear has on you. Your fear(s) probably won’t disappear overnight, but hopefully, you found something in here to helps dim the switch on your fears.

Be sure to bookmark this page and come back to it for the checklists at any time.

#TLLCTuesdayTip: A lot of fear is based in the uncertainty of the unknown. We fear that which we do not understand. Education is power. Through education, we can slowly break down some of those fears. And for those fears that cannot be combatted through education alone, therapists and support groups of other LS Warriors can help dim that switch, and lessen the intensity of your fears.

The Grief Project

The Grief Project is a collection of voices from people around the world with Lichen Sclerosus, sharing their experiences and journey with grief after their LS diagnosis. The purpose of this project is threefold. First, the goal is to create a space for other LS Warriors to safely and bravely share their experience with grief. Second, my hope is writing about grief and LS will be therapeutic, cathartic, and provide you with some important insights about yourself. Third, the purpose of The Grief Project is to normalize these types of discussions about Lichen Sclerosus and mental health.

You can contribute in a number of ways such as:

A) Writing your own piece and choosing your own images.

B) Writing your own piece but have me choose the images.

C) Doing a virtual interview with me and I write out the interview and you choose pictures you’d like.

D) Doing a virtual interview with me and I write out the interview and I’d choose the pictures.

If you would like to contribute, please feel free to reach out.

Reach out to Me

Message me about The Grief Project, this post, or about Lichen Sclerosus on:

Instagram: @thelostlabiachronicles

Facebook: @TheLostLabiaChronicles

Email: lostlabia@lssupport.net

Virtual Meetups

Do you want more support in your journey with Lichen Sclerosus? Consider joining our Lichen Sclerosus Support Virtual Meetups. We meet bi-weekly, every other Saturday from 2-4 and 7-9 pm EST. These meetups are a safe space for you to share your story, cry, celebrate, vent, ask questions, and be a part of a community of support. Click the button below to sign up!

Lichen Sclerosus Support Virtual Meetup Sign Up

Resources

For Nira Lall (embodiment coach)l: https://www.niralall.com/ and niralall on Instagram.

For Celina (sex educator): sexedcelina on Instagram

Disclaimer:

*The Lost Labia Chronicles does not provide medical advice or engage in the practice of medicine. The information provided by The Lost Labia Chronicles is for education and entertainment purposes only and does not under any circumstances constitute medical advice. Please consult with your healthcare provider before making any changes to your healthcare plan.

Jaclyn

I am the face behind The Lost Labia Chronicles - all things Lichen Sclerosus. I was diagnosed with Lichen Sclerosus in April 2019 and have been in remission since October 2020. I'm passionate about the intersection of mental health and sexual health with Lichen Sclerosus. My aim is to provide hope to those living with Lichen Sclerosus.