A few weeks ago, I had the pleasure of sitting down and interviewing an amazingly brave soul. We had a great conversation about the nature of grief and how it intersects with many facets of Lichen Sclerosus and our lives. She is an incredibly smart, powerful, warm, and compassionate human being, and it was an absolute honor to witness her strength and vulnerability.
What follows is a transcription of our talk. Without further ado, let’s get into the interview.
Mentions of abuse and trauma.
Jaclyn: Let’s start off by when you first started having symptoms and what your process looked like for getting a diagnosis.
Anonymous: I was diagnosed in college. That was either the fall of 2008 or 2009, and I was in a different city for school. I initially assumed I was having a yeast infection, and I did have problems with recurrent yeast my entire life, so I figured it was yeast. However, the itch was more pronounced and did not go away with treatment. Thus, I went to see an OB-GYN at my college, and, because it was a college doctor, I had never seen her before, and, thus, I had no rapport with her.
Anonymous: When I visited the OB-GYN on campus, she immediately thought something was wrong. She did a clinical exam and concluded a biopsy was necessary and did one on the spot. This was pretty scary for me. I come from an abusive home, so I didn’t have my mom by my side to support me. I did ask a friend to come with me for support, but she was in the waiting room. Unfortunately, the OB-GYN didn’t really explain a lot or tell me anything. She just kind of went right for the biopsy; she was actually taken aback by how well I tolerated the biopsy. I was sent home with Neosporin to heal the biopsy site, and a week later, I got a call saying it was Lichen Sclerosus and to fill a prescription for Clobetasol.
Anonymous: That was all the information I got. As a young college student, I just filled my prescription and started using it. Unfortunately, I didn’t get better at all. Initially, I thought OK, it will eventually work. However, it never really got better. Additionally, I was fighting depression, so this was a really challenging year for me.
Anonymous: That summer, I went on a study tour across different countries. My friend – the one that waited for me at the OB-GYN in college actually convinced me to go. It was a very exciting trip, however, it took things from bad to worse. I wasn’t used to such hot weather. I remember telling my friend I wasn’t feeling well, but she didn’t really understand.
When we got to the hotel I was in tears explaining how much pain I was in. Her response was a curt, “well do you need to go home”? This was not the type of supportive response I was hoping for. She didn’t know I had Lichen Sclerosus, per se, but she knew I had a condition there and it caused a lot of pain, discomfort, and bleeding.
Anonymous: And this is when it first really hit me. Not only was my Lichen Sclerosus not going away, but I realized how different I was from all of my friends. I even lost a bunch of friends. I just couldn’t be the average 20-year old college student that I wanted to be. Forget about dating, I had completely given up on the idea of dating. With no friends and no love life, I found myself in a deep depression and grief.
Further, I never wanted kids, but I always wanted this to be my choice. And now, I felt like this too was being taken away from me. I mean, I could barely endure a period, how on earth was I supposed to consider childbirth. I felt like I had completely ceased to be a woman; everything was stripped away from me.
Jaclyn: Yes! I mean 20 is such a hard age to process all this. At 20 years old, you just want to fit in and be like the rest of your friends. You want to date, party, dance, go on adventures, and be frivolous. Instead, here you are with this condition that isn’t improving, feeling like you’ve lost your identity, your friends, and any possibility of a love life; it’s a lot.
Anonymous: Exactly. And I felt so left out. So many times I was invited to things and I had to decline. I mean, at the time, I could barely look at my skinny jeans without sobbing, knowing how much discomfort it would cause to wear them. This made me feel incredibly alone.
Jaclyn: Yes, I mean even the skinny jeans, which is arguably not as heavy as potentially not being able to have kids or date again, that’s still hard to process. Fashion is part of our self-identity and many of us choose to express ourselves through clothing.
Therefore, to have to get rid of it can impact our mental health. And I think this is something people often don’t understand. They will say things like “well it’s just clothing”, or “why don’t you just wear a dress.
And here’s the thing. It’s not, “just clothing” to us. It represents a loss of identity, a loss of self, and it is a stark reminder of the fact that we are different. And this is hard to process. It kind of comes back to you and childbirth. You didn’t want kids, but you wanted that to be your choice. Similarly, I’m not opposed to dresses, but I’m opposed to them in the context of I no longer having a choice in what I can wear because of Lichen Sclerosus. The implications of “no more skinny jeans” are a harsh reminder of what this disease is doing to your body, can do to your body, and your future. I think this is something you grieve for.
Anonymous: Yes. Honestly, I think a lot of people just don’t realize how hurtful these comments are because my reality is so different from theirs. And maybe it is “just jeans”, but it’s “just jeans” plus 20 other things that deeply affect our lives.
I also think the societal narrative behind womanhood and what it means to be a sexual being is deeply flawed and harmful.
Additionally, coming from an abusive and very religious home, everything just kind of hit me hard. In this environment, I was forced to wear dresses, so I didn’t want to return to that. I wanted to wear pants. But now, once again, it seemed like my choice was being taken away from me. This was hard for me to process.
Finally, I felt ready to embrace my body after the abuse, I was ready to wear swimsuits and pants, and then bam, nope, all of these things will cause me pain.
So yes, I think there was a deep sense of grief around my body, clothing, femininity, and sexuality.
Anonymous: After graduating, I came home and quickly tried to find a gynecologist because my Lichen Sclerosus was not improving. I found one and she was much better. She was kind and worked with me very extensively. We had appointments every couple of weeks for the first few months. Each week, she would examine me and discuss adjusting the steroid accordingly. We tried several different steroids during this time. I moved from Clobetasol to Betamethasone and then to Triamcinolone (which is where we stopped). Additionally, I was given estrogen cream.
For the next year and a half, I was still suffering quite a bit, despite her help. This led to a new level of frustration because I felt even though she said it looked better, I didn’t feel better. That is, the itch and pain were still there. Around this time, she told me it was likely a combination of Lichen Sclerosus and vulvodynia.
Anonymous: My gynecologist said the causes of vulvodynia aren’t known, although there seems to be a connection with sexual abuse/trauma.
Around this time, I was dating (the man who is now my husband). And he lived in a different city, so we did the whole long-distance thing for the first while. One time, he was visiting, and I had so much pain from LS. In fact, the pain was so unbearable I had to go to the ER. This experience was both validating and frustrating. First, the doctors didn’t even know what Lichen Sclerosus was, and they were horrified by how bad I looked. Second, when they tried researching it, they couldn’t even find it in their database. The doctor did a full-on pelvic exam, with the speculum and all.
Jaclyn: Oh my God, that must have been excruciating. Regardless of how gentle and slow he was, if you cannot tolerate a q-tip touching the fourchette or cold water on the area, a speculum is going to hurt.
Anonymous: Yes, exactly, and it did. I told him I have general pain and he used the smallest sized speculum they had. My husband and a female nurse were in the room. Everyone was shocked by how bad it was and so I was put on prednisone. The prednisone was to try and get the inflammation down.
Anonymous: This period was by far the worst moment in my LS journey. At this time, I started to write poetry about my emotions and experience. I think that was when I truly grieved. I loved my boyfriend so much, but I was terrified this wouldn’t go away and what it would mean for our relationship. Thus, there was a lot of angsty poetry about grief and frustration at the time.
Jaclyn: Was poetry one of the ways you dealt with heavy feelings of grief.
Anonymous: Definitely. I processed a lot of grief, and emotions relating to abuse and pain through poetry. It was something I enjoyed doing, and, further, I found a sense of community through it. I studied poetry in college, and I had friends who also wrote poetry. I shared some of my poetry with them and then I started a poetry group in my area that met bi-weekly where we’d share and critique each other's poetry. In this sense, it was very cathartic for me. Not only did I get to write about my pain, but I got to share with others and feel a part of a community.
Jaclyn: I get that. Even if you aren’t ill, I think artists come with a deeply compassionate and empathetic soul that lends itself well to listening to these types of situations. I love that you found a community with whom you could share your pain and grief.
Anonymous: Around this time I published a piece on my experience being on prednisone, so that felt very validating.
Anonymous: I grew up in a religious cult and went to a religious college. During this time, I started to question my faith. I was born into the cult and got out, but even after rejecting their ideology, I felt very frustrated and abandoned. I couldn’t reconcile my abuse, LS, etc., with God being a loving God.
I’m now an atheist, but during this time, I was angry and frustrated. I now find my spirituality in nature and community with others.
Jaclyn: That is incredibly heavy. And we know the stress and mental health struggles can impact our LS. Holding onto any negative emotion, honestly, can hurt our body, so I love that you got some of your pain out of your body through poetry. I’m a big proponent of getting our feelings out of the body and into the world. Of course, it won’t completely solve our hurt, but in time, it can lighten the load.
Anonymous: I did reconcile my friendship with an old friend later on. I confided in her, but she didn’t get it at all. She would see things on TV and tell me about them. For example, she saw an episode of Sex and the City, and one of the women in the show gets vulvodynia. In the show, she said, “my vagina is depressed”. Now that didn’t resonate with me, but my friend latched onto it. After that, she saw a documentary where women use dilators. Immediately, my friend told me, “I know what you need; you just need dilators and you will be fixed”. However, I was terrified of dilators at the time and had no interest.
She didn’t understand that at the time, I was grieving. I was in no way ready to start trying to have sex. I had friends, but I still felt alone with my friends.
Jaclyn: Yes, and it seems very black and white. For example, use them and you will be able to have sex with no problem. And sure, they are why I can have pain-free sex, but it’s not as simple as it hurts, use dilators, you’re fixed. To me, this has to do with the subtlety of language and experience. For example, instead of “use dilators then you can have great sex like me”, try starting by asking, “do you want to have sex right now; are you ready to engage in this conversation”. It’s so important that you are ready; you can rush working with dilators, or really, any kind of healing therapy.
Jaclyn: Honestly, I love that more shows are normalizing pain with sex, dilators, etc. That said, I think it’s important to process your grief and emotions before diving into dilators. Then, you have to process the fact that you are in your 20-30’s and you have to use dilators. I had to do this. I remember lying in bed, crying in fear over the smallest dilator, 6 months into my marriage, 31 years old, and I have to do this to (hopefully) one day be able to have sex again.
Anonymous: For me, I always had pain with sex. Growing up as a teenager, I did think something was wrong, but I thought from a religious perspective this would change when I met the right guy and got married. But I did, and it still hurt.
Anonymous: Later in my marriage, I finally found a therapist and joined a sexual assault support group. Further, I started getting treatment for my depression (I hadn’t got help until then). This helped a bit in dealing with feelings and thoughts tied up in sex and penetration. However, I still am not completely open to this. Right now, my focus is symptom reduction, and other types of sexual intimacy that do not include penetration.
I think this was/is a big part of the grief. Feeling like I’m not like other women. I think this is the last hurdle for me. I’ve come to accept my Lichen Sclerosus, and I finally have hope that science will progress and be able to provide a better quality of care. However, there is still this grief piece around the woman I thought I would be that I’m still working with.
Jaclyn: Yes, grief and Lichen Sclerosus is a journey. There are things we will work on for years, but the hope is in time, things will start to weigh a bit less heavily on your shoulders.
Anonymous: Absolutely, and I think another huge piece is community. Before going to the sexual assault support group, I used to think I was the only one that thought this way. I felt so alone in my experience. After being a part of this support group, I felt a part of a community that understood. This was very validating for me.
I do want to mention that I had started a book called “The Grief Recovery Handbook” (links below). It’s a tough read, and it’s recommended to work through with a therapist, but it’s an interesting take on grief. Essentially, it says grief is a reaction to unfinished things. I found out about this book through the CPTSD Foundation.
Get the Grief Recovery Handbook by John James on:
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