I work with mostly women……lots of them. As an elementary school principal, I have mentored and gotten to know many women on both professional and personal levels. This opportunity has made me privy to their stories and as a result, has allowed me to gain validity about my own health.
I have always felt that as a woman, my health care should be specific to me as our bodies are hormonal and undergo life-changing events like pregnancy and menopause. I have always believed that I have to be my own advocate. In most areas that gets me the answers that I want or need. In the medical arena, it does not. After two difficult and hormonal pregnancies that required the last 9 weeks each on bed rest, I developed itchy painful external vaginal areas. Having an uncomfortable vaginal biopsy determined an autoimmune condition called lichen sclerosis.
Following, I was told this happens after pregnancy sometimes. When I asked why and if it was common, the answer was “no, it’s not common” and “it just happens sometimes.” When my questions came around to a possible hormone imbalance, the answer remained, “it just happens sometimes.” I began using a steroid cream, the only real treatment and would need to use this cream for the rest of my life. This would keep the skin from tearing and itching at the least, and developing cancer at the worst. All for something that “just happens sometimes.”
Several years later, although the condition was getting better, my gynecologist decided that I should see a dermatologist in order to determine if we were using the right intervention. This was surprising to me as back when I was initially diagnosed, this was the only treatment. After meeting with the dermatologist, she recommended I discontinue using the steroid cream as steroids are not meant for long-term use. I was told it was not healthy. In the meantime, I had been using this steroid cream for roughly five years…. Everyday!
I was prescribed a bacitracin-based ointment but the itch and the painful areas have returned. Suddenly there is also a laser treatment option which is not something I am considering at the moment. From my own research, the laser treatment is typically used for vulvovaginal atrophy but MAY work for conditions like lichen sclerosis.
In the meantime, I am at a crossroads. I feel like I am back to the drawing board. I am not symptom-free and I still can’t help but wonder why lichen sclerosis just happens sometimes after pregnancy. I am compelled to align myself with the efforts of those who also wonder the same things.
This is my story and the response of “It just happens sometimes,” doesn’t work for me. I have two daughters. As I think of them, I want their health stories to be different than my story and the stories of so many women I know. I am grateful to be able to tell my story on a platform that is working to build awareness about women’s health and find answers that are better than “it just happens sometimes.”