Introduction
Are you struggling with the sexual health aspects of living with lichen sclerosus? Do you feel like your sexual identity took a massive hit after being diagnosed with LS? Perhaps you struggle with low-self confidence because of anatomical changes to your body. If so, you are not alone. I felt all of this and more in the first year of my lichen sclerosus journey. In this post, I discuss what motivated me to get a sex therapist after being diagnosed with lichen sclerosus. Then, I share how working with a sex therapist helped my physical and mental health.
Stay tuned! In my next post, I'm going to approach the topic of sex therapy from a more practical angle. Specifically, I will address things like how to find a sex therapist, how to vet them, red flags, etc.
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My Sexual Health Up Until Getting Diagnosed
If you've heard my diagnosis story, you know that my first symptoms of lichen sclerosus started as pain with sex in my early 20s. This pain, which began as mild discomfort progressed to intense burning, stinging, and tearing during sex. By the time I hit my 30s, my sexual health was awful. Sex was excruciating; I had so much anxiety around sex and penetration. Perhaps unsurprisingly, my libido was also shot. I lost all confidence and questioned myself as a sexual being. In fact, I didn't feel like I had any sexual identity at all. Sexually speaking, I felt like a shell of a human, unworthy of love, desire, care, or compassion.
I had partners throughout this time, and eventually married my husband when I was 30. Penetrative sex was always complicated, and, because I didn't have a name for what was wrong with me, it was hard to communicate about it. I did my best by describing my symptoms and mental distress, but many didn't understand and took it personally. Fortunately, my husband was super compassionate and was more than happy to get creative with me about ways of having sex.
Still, I would be lying if I said I didn't wish every day that I could just function properly and not have these vulvar issues.
How My Diagnosis Affected my Sexual Health
When my doctor gave me my diagnosis, my head was spinning.
“It's an autoimmune condition…you have an increased risk of cancer…just apply your medication, and you can have sexual dysfunction with LS”,
my doctor said to me.
At least, those are the fragments I remember; I pretty much dissociated after I got diagnosed. Being told, as a newlywed at 31 years old my condition could cause sexual dysfunction destroyed me. My already declining sexual health plummeted.
In addition to thinking I could never have penetrative sex again because of pain and tearing, I was struggling to process the anatomical changes to my vulva. When I first looked at my vulva in the mirror after being diagnosed, I was absolutely horrified. It was all white, and I had lost my labia minora. My vulva looked white, flat, and disfigured. It didn't take long for me to feel profound disgust and shame about how my vulva looked. I had never felt so completely hopeless, ugly, and unworthy in my entire life.
A Critical Moment in this Chapter of my Life
Despite my ever-worsening mental health at this time, I was able to see my rapid decline. I knew I needed professional help and fast.
I've had mental health issues since I was a child, so I'm no stranger to therapy. However, my gut told me I didn't want to see a regular therapist for this. I don't even know if I would have been able to talk about my sexual health and lichen sclerosus with a regular therapist. Instead, I knew I wanted to see a sex therapist. If you've read my free eBook, ‘Three Key Things To Have In Place When You Have Vulvar Lichen Sclerosus‘, you have read about the difference between a regular therapist and a sex therapist.
Briefly, a therapist is a licensed mental health professional like a psychologist or therapist who works with folks living with mental illness and mental health issues. Some work with patients with general mental health issues, while others are more specialized and focus on a specific subset of mental health. For example, some therapists specialize in early childhood development, addiction, eating disorders, etc. While some therapists work with a broad spectrum of mental health issues, specialized therapists research and work in a very specific area of mental health. Typically, they have more training and research in this area.
For me, I knew I wanted to work with a sex therapist – someone who is specifically trained to work with folks with a variety of sexual health issues.
What We Worked on in Sex Therapy
I did a fair bit of research before booking my first sex therapy session (I will talk about how to find a sex therapist in my next blog post). For my first session, I actually got trapped in a staircase and had a panic attack, and showed up 35 minutes late! It's a long story, so I will share that on my YouTube channel when I film a video on this topic.
The first session was mostly her grounding me post-panic attack. The next couple of sessions were kind of taking my general history and going through my goals, motivations, and reasons for seeking sex therapy. From then on, we worked, very slowly, on a variety of sexual health-related issues.
For example, we worked on:
- Body dysmorphia around my vulva.
- Feelings of shame and disgust in myself.
- Libido-related issues.
- Worries about my relationship.
- My concept of what it meant to be a sexual being.
- Depression and grief about my sexual health.
- Fears around having sex again.
- Supporting me with the mental health aspect of working with dilators.
- Intimacy issues.
Let me know in the comments if you want to hear more about these different pieces.
My Sexual Health Today
Today, my sexual health is probably the best it has ever been. It took time and a lot of hard work. It meant sitting with and processing an immense amount of trauma, pain, and hurt. I still work with my sex therapist to this day, which means I have been with her for over 3 years now. We spend less time on sexual health these days, but if something comes up, I know I'm in excellent hands to help me work through it.
Not only am I able to have pain-free penetrative sex, but through this hard work, I feel more confident in myself as a sexual being and no longer feel like I am broken. I am more positive and optimistic now about my future and my sexual health than I have been my entire life.
Conclusion
In sum, working on my sexual health with my sex therapist did wonders for my sex life and mental health. The change didn't happen overnight, and my progress was anything but linear. Nonetheless, working with a sex therapist help me foster a healthy and loving relationship between myself and my vulva and really helped me through many mental health hurdles whilst working with dilators.
Reach Out to Me
If you want to chat with me about biopsies or Lichen Sclerosus, I can be reached at:
Instagram: @thelostlabiachronicles
Facebook: @TheLostLabiaChronicles
Email: lostlabiachronicles@gmail.com
1:1 Lichen Sclerosus Peer Support Calls with Jaclyn from TLLC
If you are struggling with grief and emotions, feel free to book a 1:1 call with me. Simply click on this link to learn more about lichen sclerosus peer support calls.
This is such a big topic Jaclyn. I feel like the condition starts long before the symptoms present and there is a lot to be looked into regarding the imposition placed on us from young girls around sex that for me just felt wrong but where do you turn as everyone else seems to have just accepted it as normal and you just have to deal with it.
Hi, Suzanne. Thank you so much for taking the time to comment – I so appreciate you. And yes, it is difficult for sure, because most of us are told to just be grateful for what you do have. I’ve been told that so many times when fighting for my sexual health it’s not even funny. So I feel you on this, for sure.