7 to 9 minutes to read
Disclaimer: This blog post is for educational and entertainment purposes only. It does not constitute medical advice. Please consult with your healthcare provider before making any changes to your health plan or treatment. Individual health needs and responses can vary, so personalized guidance is crucial.
Post Highlights:
- This post is a transcription from our IG Live and has been edited for clarity and conciseness.
- The Role of Personal Experience vs. Online Information: Sharing personal experiences, like Jaclyn’s Instagram posts about lichen sclerosis, fosters understanding and support that online searches often lack. Unlike impersonal online information, personal stories within supportive communities offer empathy and connection that are crucial for meaningful support and understanding.
- The Importance of Professional Evaluation: Stress the importance of consulting a healthcare provider before starting treatments or exercises, as Suzanne learned from a gynecologist. Personalized advice is crucial to avoid worsening conditions.
- Integrating Partners in Self-Care: Jaclyn’s approach to involving her partner in her self-care routine offers practical insights into how partners can support each other through medical challenges.
- Managing Lichen Sclerosis and Pelvic Floor Issues: Summarize tips for managing symptoms of lichen sclerosis and how pelvic floor issues are handled, including the value of specialized physical therapy and personalized care.
Introduction:
Navigating the complexities of health conditions, especially those that affect our intimate lives, can be an isolating journey. Many of us turn to the internet for answers, only to find a sea of impersonal information that lacks the compassion and support we truly need. In this blog post, we explore the profound impact of sharing personal experiences and the limitations of relying solely on online resources. Through a heartfelt conversation between myself and Jaclyn, we uncover how community, empathy, and personal stories can bridge the gap left by generic medical information. Join us as we delve into the power of human connection and the vital role it plays in our healing journeys.
Suzanne: I had an important realization. After we taped our last conversation on your YouTube video, you mentioned losing your labia. Later that night, I went to the bathroom and messaged you, saying, "Jacqueline, my labia is gone." You were so kind and encouraged me to lean into my feelings. This experience highlighted the power of community and how you’ve built a phenomenal network. I'll finish the story of what happened that night, but first, I want to emphasize how safe you made me feel. Even though we only know each other from Instagram, I felt comfortable reaching out to you for help, and you did support me.
Suzanne: I hope to offer the same support to our community. What inspired you to share your journey on Instagram? How did you make it feel safe for yourself and others, especially when discussing something so taboo? Even though neither of us are medical professionals, we share our experiences, which is powerful. Please tell me how you started.
Jaclyn: I had another Instagram account for fitness where I shared my workouts and fitness journey. As my lichen sclerosis started affecting my daily life, including my workouts, it was tough. I love being physically active, but certain exercises became painful. For instance, I’d think, "Did I just tear my vulva open?" during a lunge. This pain and distress impacted my fitness routine.
I began talking about it on my fitness page using the hashtag #LichenSclerosis, explaining how it affected my workouts. I connected with Kathy from the Lichen Sclerosis Podcast through this hashtag and began sharing my story. Kathy invited us to record voice notes about our experiences, which led to my first explicit sharing of my lichen sclerosis journey.
Shortly after, Kathy hosted a virtual support meetup for lichen sclerosis, which was an emotional experience for me. Seeing others with the same condition was overwhelming, and it helped me feel less alone. I realized that I wasn’t the only one with this condition, and it eased my feelings of isolation.
Suzanne: I understand. It’s tough when you’re surrounded by friends discussing their normal experiences while you’re dealing with pain and discomfort. It’s frustrating to feel disconnected. Now, as I navigate menopause from cancer treatment, I’m also grappling with these issues. What distinguishes communities on Facebook and Instagram from the information we get from Dr. Google?
Jaclyn: Dr. Google lacks the human touch—compassion and empathy that make us feel connected and safe. Google provides information but misses the personal connection and emotional support that comes from human interactions. Many people experience a lack of empathy from doctors, which can be dismissive. Healing involves more than medication; it requires processing the emotional and mental impacts of living with a condition, which Google can’t provide.
While Google is useful for finding information and connecting with communities, it doesn’t offer the empathetic support necessary for true healing. It can direct you to support groups but doesn’t facilitate the personal connections and understanding that are crucial for recovery.
Suzanne: I’m ready to re-engage with my body and accept where I am in menopause. After being in full-blown menopause for 4 years, I feel aligned mentally and emotionally with my body. There’s often an emotional aspect to sexual health that’s overlooked, especially for those not experiencing pain or discomfort. Much of the focus online is on pleasure and reproduction, but I face vaginal issues despite not being a mom. This led me to develop Private Packs, recognizing that sexual health often overlooks those not fitting the typical reproduction narrative.
Jaclyn: Absolutely. Many conditions affect the vagina beyond reproduction or childbirth. The narrow view of sex and the body can be limiting. I’ve done a lot of unlearning and learning about being an embodied human. Reconnecting with my body and redefining what sex means for me has been crucial. It’s okay for the definition of sex to evolve over time. For me, learning from educators like Dr. Kelly Caspersen about how wetness doesn’t always reflect arousal has been eye-opening. It’s about rediscovering and redefining sex according to your own experience.
Suzanne: That’s a great point. Women’s bodies do change after childbirth, but the medical focus often seems to be on the overall recovery rather than the specific physical changes. We also received a question about tips for applying and retaining medication, which ties into this discussion.
Jaclyn: Here are some tips for using topical corticosteroids like Clobetasol for Lichen Sclerosis:
- Follow Your Doctor’s Instructions: Adhere to your prescribed schedule and dosage. Guidelines can vary, so adjust as needed.
- Soak Before Application: Soaking helps soften the skin for better absorption of the medication. Soak for about 15 to 20 minutes, then dry gently.
- Application of Medication: Use the recommended amount and rub it in for 60 to 90 seconds. Wash your hands thoroughly afterward.
- Use a Mirror: A mirror can help for precise application. Position yourself comfortably and use a mirror or camera to see where you’re applying the medication.
For urinary issues related to pelvic health, consider starting with a pelvic floor physical therapist. They can offer specialized care and advice. If needed, they might recommend seeing a urologist, but they can manage symptoms while you wait for an appointment.
Suzanne: A key lesson I learned is to get examined by a professional before starting pelvic floor exercises. Even if you have a diagnosis, exercises might not always be necessary or could worsen the issue. A professional evaluation is worth the investment.
Jaclyn: Pelvic floor issues are common for those with lichen sclerosus, often presenting as an overactive pelvic floor. Kegel exercises can worsen the issue, so focus on learning to release and relax the muscles. Getting evaluated by a pelvic floor physical therapist can provide tailored feedback and tools for home practice. Regular visits aren’t always necessary; a few sessions can offer significant benefits.
Suzanne: A fantastic resource is Pelvic Gym. Regarding integrating a partner into vulvar self-care, how do you approach this?
Jaclyn: My partner is deeply involved in my vulvar self-care and has even participated in a YouTube interview to provide a partner’s perspective. From the start, I was transparent with him about my therapy, updating him on both clinical progress and emotional state. He shared his concerns, and we maintained open dialogue and regular check-ins. He supported me initially by just being present and later helped with dilators, which eased his fears and improved our communication.
Every relationship is different, and some may prefer not to involve their partners. For us, staying connected both clinically and emotionally has been essential and beneficial.
SUMMARY KEYWORDS
people, sclerosis, felt, pelvic floor, sex, doctor, community, worked, sexual health, body, vulva, google, labia, tear, lycan, lichen, diagnosed, lacks, Instagram, learning
