Introduction
Grief is complex and multifaceted. Often, we grieve without even knowing that what we are experiencing is grief. This is especially common with lichen sclerosus where we grieve many aspects of the person we thought we would be. The Grief Project is a collection of voices from people around the world with Lichen Sclerosus, sharing their experiences and journey with grief after their LS diagnosis.
Today, we have a deeply moving piece by Kelly, who shares her journey with grief and lichen sclerosus. Kelly shares her story of the grief of losing a loved one, perimenopause, the struggle to get a diagnosis, and the grief this diagnosis caused. Kelly is a beautiful soul who I have had the honor to get to know personally via 1:1 support calls. She is incredibly wise, compassionate, and her warmth radiates through the screen. I am grateful for her words to help others out there feel less alone; thank you, Kelly.
Without further ado, here is Kelly's story.
In the Beginning
For a few years, I'd been suffering through really bad perimenopause symptoms: hot flashes, night sweats, mood swings, and pain. I'd received poor care from providers in my very rural area and was feeling eaten alive by anxiety and insomnia. After my periods finally stopped, some of the symptoms decreased. Maybe I'd gotten used to managing the suffering.
Losing a loved one
But then, in early 2022, one of my loved ones got sick. I tried everything, everything I could to help him – to save him! – but he passed on. I suddenly developed symptoms that made hot flashes feel like a cakewalk: pressure in my pelvis and lower belly, and severe vulvovaginal burning. The grief was unbearable and I began having out-of-control panic attacks, which hadn't happened for years. The burning never really went away once it started.
Misdiagnosed and dismissed
I saw my local doctor, who said it was a UTI and treated me with multiple rounds of antibiotics, which messed up my digestion and didn't work. I saw a new female doctor for a pelvic exam, hoping for a solution and some listening, empathy, and knowledge. She said that the burning was normal for post-menopause and to try some KY jelly. “It just happens,” she said.
The symptoms just got worse. I never once thought to take a mirror and investigate my own vulva, but I really wish I had. I went to a female gynecologist's assistant, who did another pelvic exam. She said it was simply dryness and atrophy caused by very low estrogen, and put me on oral estrogen and progesterone. I couldn't tolerate it and she took me off of these without offering any other potential solutions. After the same off-hand treatment by two female doctors, I felt confused and dismissed.
Advocating for myself
Over the next 6 months, I decided that since the doctors wouldn't help me, I had to help myself. I tried every lube on the planet…ayurvedic herbs…Chinese herbs…OTC yeast infection creams of many types…natural yeast infection remedies. Nothing helped, except yoga and meditation and calming herbs…for a while. The pelvic pain and burning were absolutely unbearable at that point. I thought I was dying. And now I feel incredible anger and heartbreak that so many women with LS share a similar experience.
I fought, and I mean fought, my way to a specialist OB-GYN, who ran tests and listened to my story. She took one look at my vulva and said, “you have lichen sclerosus.” She showed me with a mirror and I almost passed out. My clitoris was misshapen and my labia minora were almost gone. She gave me a prescription for clobetasol. She was caring but didn't have a lot of information. The fear and shame and guilt around the LS was overwhelming. Crushing.
To make things worse, she said that inflammation had damaged my reproductive organs so much I'd need surgery. I would also end up needing a total hysterectomy and my ovaries, tubes, and appendix removed. I felt like my entire pelvic area was permanently broken.
Support from the LSSN
I found the LSSN and Lost Labia Chronicles in those first few days of obsessive internet searching, and am so deeply grateful to Kathy and Jaclyn for their work to make sure women know more…that doctors know more. The education I found there was everything! I learned how to put my clobetasol on correctly and saw that I was not alone in this disorder. I started following recommended sources on Instagram and am continuing to learn. Reading about a possible connection to trauma, I thought back to my abusive family and how I used to have what I called “cuts” on my vulva around my periods…and how for me, symptomatic LS first appeared suddenly during a time of deep pain and grief.
Having 1:1 calls with Jaclyn has been a godsend. I feel like I can ask any question, share any experience, and be seen and understood. Even though I'm blessed to have a therapist, Jaclyn is a great part of my healing team. She knows because she's been through it, walking alongside LS patients like herself.
Treatment and hope
I used the clobetasol 2x per day for 3 months and just recently have reduced it to 1x per day. I also use pure coconut oil in between, daily. It seemed to have been a combo of alternating clobetasol and coconut oil that got rid of the white vulvar lesions. Cerave Healing Ointment also works as a barrier. Due to my recent pelvic surgery, I'm now using estrogen (patch and vaginal cream) and testosterone and am tolerating them well.
I'm a yoga and meditation teacher and have been humbled and grateful to have these tools I know well to help cool the inflammation. There is a lot of deep breathing and meditation going on! I am focusing on the anti-inflammatory aspect, too: that is, avoiding anything or anyone that feels unsafe or inflammatory to my body. There are some foods I have already identified as triggers (chocolate is sadly one, along with sugar and acids). I'm really diving into the pelvic floor as well: what a powerful ground for healing this is! Have just started pelvic floor physical therapy and feel that the skillful, compassionate care will help with the LS and surgical recovery.
One of my mantras right now is “this happened, and I'm OK.” I focus on what I can control, on peace and presence, and on finding the good—taking care of myself and taking steps towards remission. Giving myself some space and grace when I have bad days (there are plenty!).
To all those out there who have vulvar lichen sclerosus and/or any other pelvic condition, I see you. I honor your journey.
Conclusion to Kelly's Story for The Grief Project
To conclude, I want to extend a huge thank you to Kelly for her vulnerability in sharing her grief story with other LS warriors on The Grief Project. I honor and witness your strength and bravery. Please share what resonated with you in the comment section below.
Read more from The Grief Project by clicking the button below or watch this video on grief and LS here.
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.