I decided to create The Grief Project back in June 2021. I wanted to create a space for people with Lichen Sclerosus to openly write about and share their experiences with grief.
This is a topic we do not hear much about, but it is something that touches almost everyone with Lichen Sclerosus in some capacity or another. I wanted this to be a part of The Lost Labia Chronicles, but make it a separate project to truly give space to others to share their stories.
I opened up a call on my social media and to the folks in the LS Warriors membership to share their experiences with grief and contribute to this collection of voices. If you want to contribute to the project, please reach out to me (my contact information is at the end of this).
Without further ado, let me introduce you to Denise, a fellow LS warrior and volunteer with Lichen Sclerosus Support Network. Denise is an incredibly compassionate soul who I had the pleasure of meeting through the LS warriors. Reading her story, I was blown away by her strength, self-awareness, and resilience.
Mention of sexual abuse.
About five months into the pandemic in 2020, I began to have some significant vulvar symptoms that seemed to arise out of nowhere. Persistent, painful itching and burning, white and red patches of skin, tears and lesions, pain with sex, and generalized pain in my genital area were all symptoms that would not recede.
I initially treated myself as though I had a yeast infection with home remedies but had severe pain in response to inserted creams and topicals and none of my symptoms went away. I always had difficulty getting in to see my gynecologist, which was exacerbated by COVID-19, but reached out and finally had an appointment about 3 months after these symptoms persisted.
She took a culture and found that I was positive for yeast infection so she provided oral antibiotics and sent me on my way. Predictably, I found little relief from the medications so she prescribed even more of the same meds presuming this was a pernicious strain of yeast.
Still, no relief and worsening symptoms. At my next in-person visit she prescribed a topical steroid cream and diagnosed my issues as a possible response to perimenopause. I did have some relief from the cream but was only provided a 3-week tapering off course of these meds as I was told they had significant side effects.
Finally, after reaching out to my gynecologist with continuing symptoms and a growing fear that something was very, very wrong, I was referred to a vulva clinic at the University of Iowa Hospital Women's Center with a 3-month wait that became a 4-month wait due to a hospital COVID surge.
Literally, within seconds of taking a look at me, the specialist said with clarity “you have lichen sclerosus“. This being a medical school I had allowed a student to attend my appointment and the specialist said to the student “see her labia minora has been resorbed and her clitoral hood has fused“, at which time she held up a mirror and showed me those same details.
The specialist went on to describe this as an autoimmune disorder in which inflammation due to either trauma to the genitals or multiple other triggers goes out of control leading to not only the symptoms I had been acutely dealing with for nearly 9 months at that point but also more significant consequences like fusions and adhesions like I had. This meant that I had likely had the disease for far longer than the acute symptoms I'd recently been dealing with.
The doctor posited that I'd likely had symptoms in early childhood that left structural changes and now that I was in perimenopause the more painful symptoms were appearing. She also connected my extensive history of sexual abuse throughout my childhood as a possible trigger to what had been happening over time to my body.
WTF??? I'm sorry, my clitoris buried under scarred, fused tissue? My labia minora is GONE? I didn't even know a body could do this let alone felt so ashamed that I hadn't noticed these changes over time myself. How had I been seeing gynecologists persistently throughout my adult life with multiple surgeries to deal with cysts and polyps and NO ONE HAD NOTICED???
How had my most recent gynecologist, someone I trusted and was revered in the community as a top practitioner, not realized what was going on when I was having the apparent telltale signs and scars of LS?? And NOW I've somehow got to deal with the fact that my childhood sexual abuse, something I'd worked so hard in my adult life to deal with, heal from, and move on from could have had a hand in causing this lifelong disease that has scarred me for life and LITERALLY BURIED MY CLIT UNDER SCAR TISSUE?
On my two-hour drive home from that appointment, I broke…out poured a scream that left my voice thin and heaving sobbing that left me exhausted. I pulled over in a parking lot as this primal grief and anger were bubbling to the surface until I felt calm enough to drive the rest of the way home after calling my partner and trying to describe what I'd just been told through my tears. It was simply too much to take in at one time.
Over the next several weeks I scoured the internet looking for information about LS. I was desperate to find any information about the etiology of the disease, treatments, outcomes, and that pesky connection between childhood sexual abuse and my LS that my new doctor had intimated. As many of you likely know, there isn't a lot of great information online and the research available to the average citizen is pretty scarce.
I became incredibly depressed and began experiencing a resurgence of PTSD symptoms that I hadn't dealt with in nearly two decades. I was trying to have fidelity to the new schedule of soaking baths, peri-washes, application of steroids, and moisturizers and I was feeling so very sad and overwhelmed. All the while, I was keeping up my intense schedule as a psychotherapist every day and feeling less and less like I could do the job to my best ability.
Whether it was due to my discomfort of sitting and doing telehealth all day or my increasingly poor mental health, I was now feeling like my job and my own clients were not getting the best I had to offer.
Due to the stress and my response to all of this at the beginning of 2020, I started to have multiple attacks of diverticulitis, something I'd been dealing with for years and mostly keeping at bay. It was strongly recommended that I have a colectomy done soon to avoid more serious bowel issues as I wasn't responding to typical medical interventions.
The surgery is a terrifying prospect as there is a possibility of all kinds of complications both short and long term but I chose to have the surgery as I was miserable and just wanted a shot at feeling better. My specialist assured me that this would cause another LS flare after I'd worked months to nearly be in remission.
She was right. The surgery went beyond expectations with no complications but due to being catheterized and dealing with my surgical recovery, I did lose some hard-earned ground on my LS symptoms. I was feeling like a broken person with a broken body.
This brings us to now, over six months after my colectomy and nearly one year from my LS diagnosis. My partner and I decided to move to the city where my LS specialist works in and my partner is now working in the same hospital system where I get my care.
I recently had multiple benign vulvar cysts removed and am now dealing with some flaring LS symptoms as a result. I'm still working as a psychotherapist but am now planning to take a break from my practice in a few months in order to focus on my physical and emotional healing and to decide what may be next for me professionally.
I'm working with my own psychotherapist to deal with my emotional health and a psychiatrist to manage some of my anxiety and mood symptoms. I've found the LS Support Network and am eager to connect with other vulva owners who have had very similar experiences to mine. I am still dealing with grief and depression as a result of my diagnosis but do feel more hopeful than I've got the tools and the care team to help manage my LS over time.
I am now realizing that I seem to be unable to achieve orgasm with my partner which is causing a new level of grief and anxiety for both of us but I am determined to work in whatever ways I can toward reclaiming that level of sexual pleasure. Still, sometimes the grief that all of this has taken away my prior ability to orgasm makes me so incredibly sad and angry.
I used to teach an undergraduate course about grief and loss to social work students. We spent a lot of time talking about disenfranchised grief, the kind that often goes unrecognized, invalidated, or otherwise unacknowledged by social norms.
Often, students would explore ways in which grief surrounding losses of physical or cognitive function after a life change like changing jobs or having a surgery fit the definition of this kind of grief as it has the potential to be isolating or even shameful if we struggle with it and don't feel like we can be validated or supported in our grief.
I believe the grief surrounding losses inherent in LS can be considered disenfranchised too. It's not exactly typical brunch conversation to tell your friends you're feeling sad about losing your labia minora or unable to directly touch or see your clitoris due to fusing and scarring.
We're all taught that information about our bodies, particularly our genitals, as well as our sexual lives are private and personal and we rarely feel permission or intimacy to discuss this with others. I still haven't felt able to discuss my LS with anyone in any detail outside of my partner and two close friends.
Even these people who love me and support me and have gained trusted access to my inner world don't really know the depth of my grief or the ways in which it visits me on a regular basis. It sometimes feels very lonely to deal with LS.
This is a journey that I could not have foreseen and am still learning about as each new day passes. I still cry most of the time when I do my vulva check. Some days I don't want to apply my steroids or soak in a tub or do anything else LS-related.
I can still get so angry and sad that I didn't know what was happening to my body and apparently neither did any of my doctors. I have made a promise to myself to transform this pain and grief by learning to radically love and care for my body. And now, I feel like I have a personal mission to educate gynecologic providers, the general public, and other LS warriors about this disease and its management. For now, I'm giving myself permission to process my grief, recover, and learn to live my best life with LS.
To conclude, I want to extend a huge thank you to Denise for your vulnerability in sharing your grief story with other LS warriors.
Email: Jaclyn@lostlabia.com
DM me at @thelostlabiachronicles on Instagram, Facebook, and TikTok
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