For my first official blog post, I'm beginning with a very personal and important topic, that is, checking. Checking what you might ask? My labia minora, of course! I mean, she is lost, after all. I haven’t seen her since summer 2019.
In this post, I discuss a behavioral pattern that emerged shortly after I received my Lichen Sclerosus diagnosis. Namely, I talk about compulsively checking your vulva. I highlight the various emotions, thoughts, and feelings I experienced, and how I began to break this cycle that was damaging my mental health. On March 30th, I will follow-up in more detail into the strategies I employed to break the cycle of compulsively checking and where I am currently in my LS journey.
Don’t forget to read to the end for this post's #TLLCTuesdayTip!
Revisiting my Diagnosis
In my previous post, I explained how my general physician diagnosed me on the spot, simply by looking at my vulva. After immediately saying, “Oh! You have Lichen Sclerosus”, she asked if my vulva always looked like this.
“Um…I don’t know? I think so? I never really looked”, I muttered.
“Well, you definitely have Lichen Sclerosus”, she said, upon further inspection.
Once the Dust Settled
After I left her office, I went to fill my prescription for Clobetasol. I was shaking in the waiting area, completely overwhelmed by my emotions. I pretty much dissociated the first few days after my diagnosis.
Later, I kept replaying that conversation over in my head: “I don’t know what my vulva looks like“. I didn’t have a reference point to know what it looked like or how it changed over the years.
Finally, at 31 years old, I decided to take a look. Realistically, I had probably looked once or twice, but I never really looked in great detail. I didn’t know that was something someone with a vulva should do.
Full of nerves, I pulled out a pocket mirror and checked to see what my vulva looked like. What I saw made me want to curl up and disappear. The skin that was once pink had turned an off-white color. My clitoral hood was fused over the clitoris, and my labia minora was almost gone – the majority of it having fused to my labia majora.
My Emotional Torment: How I Felt After Checking
The shock of seeing my vulva post-diagnosis sent me into one of the darkest places I had ever been in my life. I felt deep shame and disgust – I thought my vulva was repulsive, and, by proxy, I was therefore repulsive. Never had I felt so ugly in my life.
Doomsday Google Searching
And then came fear. Like many Lichen Sclerosus warriors, I was not given much information about my disease. I was told it is considered an auto-immune disease, with a genetic component, and to apply my steroid daily.
As a result, I turned to google to get more information about what I was dealing with. Part of my Google search inevitably led to graphic images of vulvas with severe Lichen Sclerosus.
When I saw the images of vulvas with severe Lichen Sclerosus my legs almost gave out. My vulva didn’t resemble what I saw in those images, however, I was convinced it would be my fate, and this terrified me.
Enter Compulsive Checking
Soon after, I became a compulsive checker. I would check my vulva over 30 times a day. Some days I would look every half hour. At the time, I didn't understand why I was behaving this way. I didn't understand what was behind this strong impulse to check. I just did it obsessively.
It is critical to note compulsively examining my vulva caused me major mental distress. I got no relief from checking. It didn't help stabilize my mood or reduce my anxiety. Rather, it fed into and amplified cycles of anxiety and distress. The more I checked, the more anxious and dismayed I became. Of course, I knew this behavior was harmful, but I could not bring myself to stop.
The desire to compulsively check my vulva caused permeated almost every aspect of my life. I couldn't focus on my work because I was constantly bombarded by intrusive thoughts and impulses to check.
For example, I would try to work a on file, and I would be filled with an overwhelming urge to check my vulva. Unable to resist, I would go into the bedroom, check, and usually feel even more anxious and disgusted with myself. Consequently, when I would return to my work, it was hard to focus because my anxiety was through the roof.
I was, at best, half-present in my conversations with others. I really tried listening and engaging with others, but as they spoke, I couldn’t help but fixate on intruding thoughts and worries about my vulva.
Breaking the Habit: Sex Therapy
Something I immediately did after my diagnosis, even before I really knew what Lichen Sclerosus was and what it meant for my future, was book an appointment with a sex therapist and a pelvic floor physiotherapist (I will blog more on both of these in future posts).
I knew compulsively checking was damaging my mental health, but I just couldn’t bring myself to stop. Consequently, in my third or fourth session, I brought it up with my therapist. I told her I look at my vulva over 40 times a day, and thinking about checking took up so much space it was beginning to take over almost every aspect of my life. It was evident from her reaction this was a big deal and something I needed to work on.
It is important to note I have struggled with severe anxiety and panic attacks my whole life. Looking back, I can see how my anxiety was connected to my compulsive checking. I will blog a lot about mental health, anxiety, and Lichen Sclerosus in future posts.
How My Conversation with my Sex Therapist Stopped My Checking
There is a lot to unpack with respect to my checking, and I will delve deeper into this in future posts, but briefly, the conversation I had with my therapist during that session pretty much stopped my checking behavior dead in its tracks.
Essentially, she asked me, “what do you think is one of the main factors contributing to your checking”?
I told her, “I will miss an important change and I’ll lose my entire anatomy, or I’ll miss a bump that should be biopsied for cancer”.
“So, you check every 30 minutes or so, as well as every evening when you apply your steroid cream?”, she asked.
I nodded, as I use a mirror to look at my vulva when applying my steroid cream (this is when I was still applying my cream daily).
“What are the chances of things changing so drastically from one day to the next?” she inquired.
I paused for a good two minutes. I sat there, in silence, searching. Searching for anything I could use as justification to continue checking, however, not a single thing came to my mind. I realized then and there, if I check daily when applying my steroids, even if something does change, I will still catch it on time.
And that was it.
Something about that line of reasoning really resonated with me. I realized if I was worried about more anatomical changes, applying my steroids daily was more than enough for me to notice any change to my vulva.
After our session, I continued with my day and didn’t check until I put my steroids on that night.
Where am I Now? Fast-Forward to Two Years Later
To conclude, I stopped compulsively checking after that conversation and haven’t looked back since. Well, technically I still check, but it’s a different kind of checking. These days, I only examine myself once a month for my monthly vulva check, and twice a week when I apply my steroids as I am now on a maintenance schedule. To learn more about proper steroid use and maintenance schedules, read/listen to this amazing interview of Dr. Jill Krampf here.
I no longer feel weighed down by intruding thoughts/impulses to check. It feels freeing to be able to work without feeling the urge to check, and to have conversations with others and be fully present.
In my next blog post, I will dive deeper into what caused this behavior. I will reveal what was behind my impulse to compulsively check and offer details about how I coped when the urge to check would arise. I still get the urge to compulsively examine my vulva, but it is no longer a driving force I feel the need to act on.
Do you or have you struggled with checking and Lichen Sclerosus? What has your experience looked like? Let me know in the comments below or feel free to contact me via my various social media platforms:
#TLLCTuesdayTip – Seek out advice from a therapist or counsellor if you find yourself unable to break free from checking your vulva compulsively, especially if it is causing mental distress. Ask your doctor if you are unsure where to look.
Further reading & Important Links:
For further reading on how to perform your monthly vulva check: https://www.verywellhealth.com/vulvar-self-exam-514538
Listen to this podcast episode all about the importance of vulva checks here