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 Louise, a beautiful soul living in Canada. I first met Louise through a Lichen Sclerosus Support Virtual meetup hosted by Lichen Sclerosus Podcast. She had such a genuine warmth about her, I was instantly drawn to her spirit. Since then, Louise joins the meetups regularly and is also a part of the LS Warriors. She has a great sense of humor and is incredibly smart.
When did it all begin? I think grief can begin suddenly, with tragic news. I have experienced that. And grief can begin gradually, with a slow build-up of feelings of dread and then knowing something is really wrong. I knew something was wrong, it was nagging and nagging at me. I treated myself for yeast infection 4 times over 6 weeks, with no positive results. Besides being quite beside myself with worry, the symptoms were impacting my daily life with itching, soreness, inflammation, making sitting almost impossible and wearing clothing very uncomfortable, making life pretty miserable. And it’s such a personal private affair how can one talk about it to anyone else?
Four months into the pandemic, when none of us knew what would happen next, I was finally able to see my GP. With a very serious look on his face, he said he was sending me to see the gynecologist. After several more months of waiting, while agony is making a playground of my body and mind, I get to see the OBGYN. She enters the examination room with gloves and mask, crosses the line on the floor where she is allowed to stand, with me on the other side, and tells me we have only a few minutes. I am already stressed out of my mind, and she is letting me know I’d better be quick with my complaint.
My months of worry and illness have been reduced to a few minutes of her schedule.
She examines me and, with a helpful little diagram, tells me I have Lichen Sclerosis, an incurable lifelong disease. She tells me I will get a prescription and use it as instructed.
That’s about it. At least that is all I can remember. I don’t recall if she asked if I had any questions. It was already blank anyway. She did not give me any further information or resources.
As I am leaving the building, my head is spinning and I feel out of balance. What does this mean? Will I never get better? Who am I now? What will become of me? What kind of a woman am I? How can I tell my husband that I am now damaged and spoiled?
I get the prescription filled. I apply the steroid ointment every day for 1 week, every other day for 1 week, then 2 times a week. Oh yes, and the OBGYN told me to vaginal moisturizers, using Replens one day and RepHresh the next day. She didn’t explain why or what this was to accomplish or for how long. I do this, I am a good patient, but I do not talk to anyone about any of this; I don’t tell my partner that this is incurable, that it is lifelong, that there may be consequences of this disease on my womanly parts.
And so, I soldier on. Soon, I’ll be back to normal. But, the symptoms continue. Then they get a bit better. A bit. Then I summon the courage to look it up on Google. The pictures are horrifying. I am stunned. What ugly words “Lichen Sclerosis”. Like some old moldy growth on some old empty rotting log. I feel empty. My daintiness, my femininity, my old self is lost. This is not me! This is not who I am! No! Not me! How could something like this happen to ME!!!! I continue hiding the reality from everyone, and maybe myself. I do not talk about it. I’m sure I will get over this.
My daughter is moving to my town, from across the country. How wonderful and incredible is that! I never thought it would or could happen but we are making it happen. Right in the middle of Covid 19 and right in the middle of my personal crisis. My grandchildren will be nearby. This is amazing. What a blessing. What a wonderful distraction. But then I am overwhelmed with anxiety. I see a lovely therapist (by Zoom) and work very hard on some long-term relationship and trauma issues (who doesn’t have those?), and I go on anxiety medication. Things improve. Now I can handle all this. After a few months, I was actually managing very well.
Seven months after my diagnosis I have a huge flare-up. Finally, I am forced to look at myself in the mirror. I finally ask my partner to help me, and he sees too, what I am looking at. I have lost some of my labia. There is a lot more white area, and I am also very inflamed.
Now I know this is real, this is for certain, I can’t deny it any longer or hope it will just go away. I cry and I cry and I cry all day. Now I am changed. I am not who I have been, and I am not the woman who is free and easy. I am never going to be the woman who can be crazy sexy and fun, and this makes me feel devastated. This disease has brought me face to face, with feeling helpless and out of control and that is not who I want to be.
I call the OBGYN for an appointment. The receptionist asks me what my problem is, she says I should just apply the ointment 2x day, she asks haven’t I looked it up on Google, she says the doctor is very busy you know, she doesn’t know when the doctor could call me back. I have to be patient, I have to be calm, I finally get an appointment.
The doctor does a quick exam and asks me if I would agree to a biopsy. I ask if that would possibly make a difference to the diagnosis. She says no. I ask her if it would possibly make a difference in my treatment. She says no. I say no thanks then. I believe she asked to do a biopsy to prove to me that she is right, rather than for any medical purpose. She then says I seem very upset, maybe I need to get some counseling. I don’t think I said anything in response.
What I do need is information about my disease, how to treat it, how to control it, how to live so I can wear clothing, so that I can sit comfortably. What I need are answers to my questions. I am so angry! I feel my condition and my worry have been belittled, I feel patronized, and my pain and suffering are of no consequence to the very person I am turning to for help. Along with LS, I also manage IBS, neurological itch, thyroid disease, and issues resulting from vaginal atrophy, and of course, anxiety. This lot to contend with! How much more am I supposed to manage all on my own, and not display my concerns and be upset. And also, of course, I am now feeling really sorry for myself.
I make a decision and decide I am never going to go back to that doctor. I call my GP for a phone appointment (we are still in COVID lockdown).
He calls and we discuss my experience with the OBGYN, that I have lost trust with her. He mentions that she suggested I get counseling.
I tell him if she was just able to answer my questions I wouldn’t be so upset. So, he asks me, what are your questions? We discuss them.
I had been using the steroid ointment every day for about 2 months at this point, way too much. He told me to cut that down to every other day for the next 4 weeks, then 2x weeks from then on. He tells me I am welcome to call him anytime for any reason. And he also says something that I really needed to hear. He says, with a soft and gentle voice “Louise, you will find ways to live with this. I know you will.” This gave me so much relief and encouragement. The next morning I woke up with the thought “I will find a way”, so I went online and found the Lichen Sclerosus Support Network, which I think has saved my life.
I’ve learned how to effectively apply ointment. That is a big thing and it is definitely helping. Then I develop pain in my inner thighs. So terrible I could barely wear clothing or walk. Someone in the LS network suggested I get help with a Pelvic Floor Physiotherapist (who knew there were such things). She helped me tremendously and that has been resolved.
I attended a workshop about Acceptance and Commitment Therapy in the LS Warriors, and this really rings a bell for me. I know I need this. When I have a flare-up or other symptoms I realize that I not only have physical symptoms but strong emotional responses. I am angry and resentful.
Furthermore, I am scared that there is no one who really knows how to take care of me. I am so used to being the person who does the fixing and the caregiving. Sometimes, I am so preoccupied with my own dilemmas. I sometimes don’t know who I am anymore because I have changed. Is this all part of the grieving process? It seems to be taking me a really long time to process. Recently I started working with an Osteopath who makes me feel relaxed and whole. I am in the process of finding a chronic pain support group in my city. And I am looking for a therapist who knows about Acceptance and Commitment Therapy.
Each night I write in my Gratitude Journal. I try to find at least one thing to do each day that brings me pleasure. And I am learning to say no, mostly to myself. Instead of cooking every day, we are now using a few more conveniences. I am not offering to help as much. I am asking my partner to do more.
There is a long healing road to go down and I think it will take a lot of work. I will continue to research, explore and discover ways to make my life meaningful and comfortable. I hope it comes soon.
Louise – Canada
Email me at lostlabiachronicles@gmail.com or shoot me a DM on Instagram or Facebook (@thelostlabiachronicles).
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