I decided to create the Grief Project back in June 2021, when I wrote a post about my experience with grief and LS (read it here). 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).
Read more from The Grief Project here.
This week on The Grief Project we have Jen, a fellow LS warrior, who will be discussing her journey with grief from Lichen Sclerosus, a traumatic birthing experience, and episiotomy scar endometriosis. Jen is one hell of a woman, she has faced some serious hardships and beat them all. Listen to her incredible story here. Now, without further ado, I will turn it over to Jen.
I didn’t know that grief could happen without losing someone due to death. Unfortunately, during my life, I’ve lost quite a few family members (one who was 4 years old), friends, and students, so I am used to grieving when it comes to that. For me, it’s overwhelming sadness, crying, and anger. With each one though, I was able to eventually move forward in life.
This past year and a half with the pandemic, I really got to thinking about all of the experiences I’ve had, and that I in fact did experience grief (and a lot of other emotions) remembering how I processed and am still processing several traumas in my life. These traumas have been over the past decade in particular: 8 years ago I experienced infertility, 7 years ago I almost died giving birth to my daughter suffering two postpartum hemorrhages (one primary and one secondary due to a rare and serious pregnancy complication called Placenta Accreta), 3 years ago my husband fought and beat cancer, 2 years ago I was diagnosed with Lichen Sclerosus, and in January of 2020 I was diagnosed with suspected Episiotomy Scar Endometriosis. Quite a mouthful!
I didn’t realize throughout these experiences that I did grieve. Grief is defined as, “deep sorrow; a natural response to losing someone or something that’s important to you.”
Losing something that’s important to you.
Well, let’s see. I lost having a positive birth experience, I lost my wish to have more than one child, I lost not having to worry about my husband’s health (because 30-year-olds should not have to have this impact them every day – but here we are – ask any cancer fighter or survivor you know how they feel about “scanxiety”), and I lost a normal vulva. Yep. A normal vulva. Just having a normal vulva, vagina, and intimacy experiences went right down the drain.
My Lichen Sclerosus journey is interesting. It began in early 2017, with a lot of itching. I brushed it off, my OBGYN couldn’t see anything, but it never stopped bothering me. When my husband was diagnosed with cancer in December of 2017 one week before Christmas, went through treatment, and then beat it in June of 2018 (yay!), my itching was unbearable. It was debilitating. My mental condition was in a terrible spot. All-day, every day, I was itching and scratching, and itching and scratching, and looking things up online, and itching and scratching, and trying to hold myself together for my husband, my daughter, the rest of my family, and my job. I did it, but I shouldn’t have had to, going through all of this, and having NOWHERE to turn.
In April of 2019, I went to my annual appointment with my OBGYN and asked her to please really take a look again, that I was in agony. She said that she could see something this time, and described it as a “white, pill-like, looking piece of skin,” on my left side, which is still to this day the only side I have symptoms on. She said that there is a condition called Lichen Sclerosus and that she believed this was being caused by a “lichen component,” because she didn’t exactly know if it was Lichen Sclerosus or Lichen Planus, but she was pretty sure it was Lichen Sclerosus.
That afternoon she called me in a prescription of Betamethasone ointment and instructed me to use it on my left side twice a day consistently for two weeks, then if that helped, to taper down to once a day, and if the itching stayed away, I could then use over the counter Hydrocortisone once a day, every day. IT WORKED! What a miracle this was, I thought. I still use my Hydrocortisone just about every day, and my Betamethasone when I have flares, which for me, is that intense itching coming back. I know immediately when it’s starting, and I do not mess around with it.
However, very soon after that, I started having a strange pain on my right side, lower this time, right at my vaginal opening, and it was not the same as what I had felt for almost two years on my left side. I went to New York City to visit my sister and we walked nonstop for four days. The spot that had been hurting me turned into an extremely painful ulcer. I was so confused and so devastated that another issue began happening, and I assumed they were somehow related. I went back to my OBGYN that June, where she did some cultures and some blood tests. Of course, everything came back fine.
The ulcer did heal, but the pain remained. It was almost like “phantom” pain like my body didn’t really heal underneath where the ulcer was. Every month, the week after my period, that spot would ache and burn uncontrollably. I thought I was losing my mind. In January of 2020, I called her one day in tears, asking them to please come back in. She did a biopsy that day that showed acute and chronic inflammation, and while it didn’t specifically show Endometriosis, she talked to some colleagues, did some research, and called me personally on three separate occasions (which I am forever grateful for), to let me know she thought she finally figured out what it was.
She suspects I also have Episiotomy Scar Endometriosis, which is extremely rare but can lead to serious morbidity. Yes. The treatment is usually surgery, but with all the trauma I’ve had and the fragility of my vulva (I tore during my emergency d and c during my second postpartum hemorrhage), my OBGYN was nervous about that and didn’t want to cause further damage. She now has me skipping every other period using birth control pills, and I can use my Betamethasone on the spot if it starts to burn again, which I have had to do, but this has made it manageable.
We both believe that the stress of the past eight years caused my Lichen Sclerosus, and it flares when I am stressed. Looking back on it all, grief could have also played a role in this.
I spent MORE THAN THREE YEARS in a tremendous amount of pain. There were days I couldn’t move. I grieved not being able to be “normal” and I still do sometimes. There were lots of days where I had plans, things to look forward to, and it was literally ruined by my symptoms. This happened multiple times, especially throughout 2018 and 2019.
I can still remember some specific days that were so bad, where I’d come home, lay in bed with ice, and just wish for it all to be over. I’d also like to point out that grief alone is mentally hard, but it takes a toll on one’s body. It messes with your immune system, it can increase the risk of high blood pressure and blood clots, eating and sleeping can be a challenge. There were days I would shake all day, but I’d have to force myself to get up and be a wife, mom, and educator.
I realized I couldn’t do that anymore and finally reached out for help and started talking about it all. These have been some of the most isolating and hardest years of my life. But, with amazing support groups, counseling, and managing my symptoms, I am now finally leading a somewhat normal life. I exercise almost every day, talk to my counselor once every 2-3 weeks, work, and absolutely love spending time with my husband and my feisty 7-year-old.
Jen – United States of America
Email me at lostlabiachronicles@gmail.com or shoot me a DM on Instagram or Facebook (@thelostlabiachronicles).
Do you struggle with mental health and Lichen Sclerosus? Do you have expectations about how you should be healing, and your mental health takes a hit when do not achieve your expectations? If so, click here to read this helpful post on progress and Lichen Sclerosus.
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