In this post, I dive into the details of my diagnosis and what that entailed. One of the first red flags was painful sex. I discuss when and how painful sex manifested, how I dealt with it mentally and physically, and how I finally got diagnosed.
Don't forget to read until the end for this post's #TLLCTuesdayTip.
Early Warning Signs: Painful Sex
*Important note: throughout this blog when I say sex I mean penetrative, vaginal sex.
In my early 20’s, sex became painful. Early on, this manifested more as discomfort with occasional burning when I would urinate post-sex. Something felt off, but I couldn’t put my finger on what precisely ‘off’ entailed.
Later, this discomfort became pain. While having sex, it would feel as if I was being split open in certain areas (such as, around my clitoral hood, the perineum, and my labia minora), and it would burn! Afterward, I felt as if I needed a break to recover before having sex again. In fact, I would strategically plan when I would see my partner next so my vulva would have a few days to recover.
Normalizing Painful Sex
Due to the fact that sex was never discussed in detail in my family, and because the sex education I received in school was problematic, focusing on scaring you about STIs, I normalized painful sex. I normalized painful sex for a myriad of reasons, the primary ones being sex was not a topic of discussion in my household growing up and the sex education I received in school was (is) problematic, focusing on fear of STIs above all else.
I regularly told myself, “It’s just because you’re small down there”.
Most of my friends with vulvas didn’t mention needing time to recover after having sex. I allowed the experience of others and my own rationale of having a small vagina normalize the pain and tearing I experienced during and after sex. Moreover, I never told my doctors about the tearing.
During one of my early sessions with my sex therapist, I remember likening myself to a pair of shoes needing to be broken in.
“Essentially, my vulva is like a new pair of shoes that need to be broken in. It is painful to break in a new pair of shoes the same way sex is painful for me. However, if I do it often enough, I get to a point where I can tolerate the pain”, I explained.
This is how I understood my ability to have sex: I was like a pair of shoes needing to be broken in.
Painful Sex & STI Clinics
Despite normalizing my experience, I visited multiple STI clinics while I was sexually active. The little knowledge I had at the time led me to believe painful sex could only be caused by an STI. However, with each visit I received a negative result.
“You’re all clear”, the doctor would say.
But…how could I be clear? I’m young and I’m into the people I am with, so why is sex painful for me?, I wondered.
Since my STI tests kept coming back negative, I assumed I was broken and there was something deeply wrong with me.
Retrospective Learnings about Painful Sex from Dr. Jill Krampf
After listening to Katy interview Dr. Jill Krampf (read/listen to this incredibly insightful conversation here) everything clicked into place. My history of painful sex began to make sense.
During the interview, Dr. Krampf noted vulva owners present with different symptoms depending on their age. While post-menopausal people with vulvas typically report itching as their primary symptom, vulva owners between the ages of approximately 18-50 tend to report painful sex and tearing as their primary symptoms.
In the medical community, however, Lichen Sclerosus is mainly considered to affect those who are post-menopausal, where itching is the primary symptom. This might be why I was dismissed for so long when reporting painful sex and tearing to the numerous doctors I saw throughout the years.
The Lead up to My Diagnosis
Despite being diagnosed with Lichen Sclerosus at 31, I believe I already had it in my early 20’s, maybe even earlier.
Since Lichen Sclerosus is considered a progressive disease and I was untreated for years, my symptoms not only worsened, but new symptoms emerged as well. For example, I began to experience fissures, dryness, and stickiness of the labia, itching, stinging, irritation, generalized pain, and discomfort. I wasn’t checking myself down there yet (you can read about my experiences with checking here and here) but had I been, I would have added skin depigmentation as well as fusing to the list.
Time and time again, I was examined and subsequently told nothing was wrong with me. In fact, a week prior to my diagnosis I went to a women’s health clinic in downtown Toronto. I told the doctor about experiencing painful sex along with my other symptoms. However, when the doctor looked at my vulva, she said everything looked fine, and told me my symptoms were neurological or caused by stress. Either way, she said she could not help me.
Why I Almost Gave up Hope
One week later, I went to see my general physician for a completely unrelated issue. I wasn't even going to see her for my LS symptoms, because I had pretty much given up hope at this point. I truly believed it was all in my head.
During this appointment I brought up painful sex and my other symptoms, and for the first time in about a decade, I finally felt heard by a doctor. Her facial expression instantly changed, indicating she may have an idea of what was going on with my vulva.
She asked if she could examine me, to which I consented, and upon seeing my vulva she said it was Lichen Sclerosus.
Finally, after all this time, I had a diagnosis.
Because I waited almost a decade for my diagnosis, my symptoms had progressed beyond painful sex. My vulvar anatomy changed so much from it’s original state a biopsy wasn’t needed to confirm my LS diagnosis.
For instance, my labia minora fused to my labia majora, the skin had turned an off-white color, and there was significant fusing of my clitoral hood to my clitoris. Thus, based primarily on visual presentation, she knew immediately it was Lichen Sclerosus.
The Silver Lining to My Experience
In spite of my experience, I remain incredibly hopeful great progress will be made in respect to LS awareness, research, and treatments because of all the brave individuals sharing their LS stories along with the ground-breaking scientific research of doctors, like Dr. Jill Krampf, Dr. Gayle Fisher, Dr. Andrew Goldstein, etc. Furthermore, the Lichen Sclerosus Support Network is working to become a nonprofit organization aiming to increase awareness, education, and provide mental health support for our fellow LS warriors. Read more about this here.
Together, I believe we will make great progress with respect to Lichen Sclerosus awareness, research, and treatments.
To conclude, painful sex was one of the first indicators of Lichen Sclerosus. Due to the narrative I created for myself (i.e., it is because you’re small, I normalized my pain. Being dismissed by doctors only amplified/exacerbated this narrative and made me feel broken and less than, like I failed as a girlfriend and romantic partner.
Looking back, I now know I am not, nor have I ever been a failure. I had Lichen Sclerosus had yet to be correctly diagnosed. This disease is not my fault. In my next post I begin to explore the impact my diagnosis had on my sex life and relationship.
Does this Sound Like You?
Do you suffer from painful sex? Do you experience tearing and/or burning during sex? How does this affect your mental health? Let me know in the comments down below!
Please feel free to contact me in the comment section below, or through social media:
#TuesdayTipbyLLC: Listen to your body! Do not normalize your discomfort! If your body is telling you something is off, trust it; don’t minimize your experience. Painful sex should not be normalized because it means something is going on.