Introduction
A few weeks ago I had the pleasure of (virtually) sitting down with a friend and fellow LS warrior, Megan to discuss her journey with Lichen Sclerosus and grief. We had this conversation interview style, and what follows is a transcription of our talk. Megan is an incredibly brave, intelligent, and strong LS warrior whom I have had the pleasure of getting to know over the last year. She's come a long way on her difficult LS journey, and I'm so proud of her.
The Early Days
Jaclyn: Let’s start around the time you were diagnosed and what emotions came up for you around that period in time?
Megan: I was diagnosed in November 2020 and at the time my symptoms weren’t too severe. Additionally, I also had PCOS (Polycystic Ovary Syndrome). Therefore, I was used to having gynecological health issues such as irregular periods and assumed my symptoms were due to PCOS. However, just in case, I decided to mention my symptoms to my doctor.
Initial Symptoms
Jaclyn: What were your initial symptoms?
Megan: I had itching. However, it was a constant or persistent itch. Instead, it was cyclical and seemed related to my cycle. For example, leading up to ovulation I would be itching really bad and then have a reprieve after ovulation (or attempted ovulation in my case). Then, when I would start my period, I would have really intense clitoral pain for the first couple of days. Because these symptoms seemed to be related to my cycle, I assumed it was a part of PCOS. Importantly, PCOS, like Lichen Sclerosus and other gynecologic disorders, isn’t well understood, so it was hard for me to understand what was really going on.
The Diagnosis
Megan: When I told my doctor about this, she examined me and said, “you look very red and inflamed”. After, she continued to tell me it looked like Lichen Sclerosus and said “here’s some Clobetasol, use it 2x a day for two weeks and we will see you next year. Furthermore, she advised me not to Google it because it’s associated with vulvar cancer (but it’s rare).
Treatment and the Anger of Being Dismissed
Jaclyn: OK. So you got the Clobetasol, what happened next?
Megan: Three to four days into using the Clobetasol, things started to spiral downwards. Consequently, I decided to turn to Google because I was in pain with no answers. In researching Lichen Sclerosus, I realized it was a way bigger deal than my OB-GYN made it out to be. I felt gaslit and misled by her.
Jaclyn: Unfortunately this is very common where doctors either gaslight their patients or don’t give them proper education on LS and how to properly treat and manage it.
Megan: Yes, and additionally, when I called the office explaining I was getting worse, they didn’t have any answers. They told me to stop the Clobetasol and use Premarin instead. I didn’t tolerate the Premarin either, and I didn’t improve when stopping the Clobetasol. At that point, they told me there was nothing they could do. Therefore, I had to take my health into my own hands and research a specialist that knew about Lichen Sclerosus.
And this made me angry. I was mad that I had to be the one to find someone that could treat me; angry that I had to fight so hard for my own health and to be taken seriously.
Meeting with the Specialist
Megan: In December, I got in to see the specialist and she couldn’t believe what I was working with. Even the specialist was upset the OB-GYN let me get this bad and the advice I was given. During the clinical examination, the specialist confirmed my suspicions, which were that I had no more clitoris and my labia minora had disappeared.
Jaclyn: And I’m guessing the initial OB-GYN that diagnosed never informed you that with Lichen Sclerosus, you are at risk for anatomical changes, especially if you aren’t treating properly. So that part must have been such a shock to the system.
Megan: Yes, exactly, this is when I really started to feel anger, seeing the parts of me I had lost. I was so mad that I was never warned about this; I was angry I didn’t receive proper education and counseling from the very beginning. And then there’s this element of guilt; why didn’t I notice this before? This further cycles back to the fact that I never received proper sex education in my childhood and adolescence.
10 Months Out
Megan: My case was so severe that the specialist had to give four intralesional steroid injections that same day. This provided relief, but that relief was short-lived. At this point, I’m ten months out from my initial diagnosis, and I have intermittent UTI-type pain. Now, a part of my anatomical changes was my urethra was partially blocked.
Jaclyn: That sounds incredibly painful; what did you do to help with the pain?
Megan: I decided to go to a pain clinic because of the chronic pain I was experiencing. My first experience with a pain clinic was negative. Instead of providing me with options and answers, they pushed a nerve block on me.
Of course, I was concerned about losing clitoral sensation since that really would be the last straw for me, but they wouldn’t address these concerns. I had already lost so much and the grief of that was so heavy, I couldn’t bear to grieve the loss of clitoral sensation and my ability to orgasm.
Thus I left and went to a different pain clinic where I was taken seriously. I was prescribed opiate-derivative medication, Belbuca, partial opiate blocker so it helps with pain but doesn’t give you the high. And so that helps, along with pain counseling.
Fast-Forward to Today
Jaclyn: What do you find yourself struggling with these days?
Megan: I had a moment of anger today because I had to wear pants for work, and whenever I wear pants, regardless of how loose they are, I’m in pain and it is incredibly frustrating.
Jaclyn: It really is, and this is your work, you don’t have many options. And there are so many layers to this frustration because when you think about it, it’s hard to accept that something as simple as wearing pants causes you harm and distress. Before Lichen Sclerosus, wearing pants was probably something you never gave much attention to other than perhaps does the color match my top. You’d never think an item of clothing could cause so much pain, and that pain triggers emotions because we are so young, it’s normal to be upset that we have to even consider things like this.
Megan: Exactly. And this is the defining thing about being a woman in the workplace and the pantsuit. So I am trying to reclaim the power dress.
Grief and Lichen Sclerosus
Jaclyn: Yes, and I think that’s another thing we have to come to terms with is some things just can’t work for us anymore. In this case, you tried all of the modifications and alternatives and at some point, you just had to accept that pants were not going to be a thing for you.
I created The Grief Project because I felt it was an emotion and feeling that doesn’t often get discussed. When we talk about Lichen Sclerosus we talk often about fear and anger primarily. However, grief also plays a big role in processing your Lichen Sclerosus, but it is different than the traditional grief you feel when you lose someone or something you knew well and lost. With Lichen Sclerosus, there are parts of us that grieve the old us. For example, the Megan that use to be able to wear a pantsuit or the future Megan that you envisioned without LS.
Megan: Absolutely. At one point with Lichen Sclerosus, you have to grieve the life you thought you were going to have, such as pants, food, etc. For me, another thing I had to grieve was myself as a sexual being; there was a point where I couldn’t have penetrative sex. In these cases, grief came into play with respect to grieving the kind of intimacy I envisioned myself and my husband having. So there is definitely a huge loss of self and also grieving the future life you thought you’d have.
Grief and Changes to Lifestyle
Megan: For me, things I had trouble dealing with was I was diagnosed in the middle of the pandemic, so it was easier to deal with because I was at home. For example, if I needed to take a bath, I could do so. If I needed to sit on an ice-pack, I could do so. Thus, when I went back to work, I had to make a lot of modifications. For instance, I have a standing desk, I have a purse with things that I may need, such as lidocaine, I have a special cushion to sit on, my wardrobe is comprised of dresses.
And I do think whether you recognize it or not this is a part of grief. I recognize some people are able to process it and make the changes to move forward easier than others, but it can definitely be a challenge. I didn’t envision this as my future; every time I carry my bag of LS stuff to work, I am reminded of this.
Jaclyn: Yes, I do something similar. I work at home, however, I always leave the house with my LS ‘kit’ (I have one for short and longer distances). Truly, it’s incredible to think of all the things we have to think about in order to function.
Disclosing our Lichen Sclerosus to Others
Megan: And another part of this is needing to tell others.
For example, I have an awesome co-worker who I told because I needed to explain why I had to bring my chair into his office instead of using the ones he already had.
Jaclyn: Yes, and this also makes us confront our Lichen Sclerosus from a different perspective. We have to now consider when and if we need to tell someone about our LS. And people don’t recognize how exhausting it can be to disclose this to others and to constantly be thinking about modifications, etc.
Megan: And you make a good point, I have all the modifications to help me function. When I get in my car and I get home, I’ve bottled it up and by the time I get home, I’m mad or frustrated. It’s definitely a rollercoaster.
Grief and Accepting Being Functional
Jaclyn: Yes, and this concept of functioning is important because most of us don’t want to do enough to function, we want to feel good. And so we have to grief living carefree and pain-free. Getting to a point where you can function but things aren’t perfect is something you have to work through and process.
Megan: Absolutely, when I have told people about my Lichen Sclerosus they often say, “Oh, so you just have to sit on a cushion and it’s OK”. However, they don’t realize the number of things I have to consider and do each day just to be at a functional level. This is definitely a piece I had to grieve and work with.
Grief and Being a Mother
Jaclyn: You’re a mother; I’m sure there was some grief that came into place while reconciling being a mother and having Lichen Sclerosus. What did that process look like for you?
Megan: For sure. For example, my husband is buying camping equipment for us to camp with the kids. However, camping for me means a lot of planning. For example, can I go on a long hike, can I swim, where will I sit. And there comes that grief again; can I commit to this camping trip and fulfill this without having my LS impede my ability to enjoy my time with my family and be fully present. This definitely wasn’t what I envisioned motherhood would be like when I first got pregnant. There are many layers to grief and grieving the mother I thought I would be.
Jaclyn: I can’t imagine how difficult this would be and this kind of grief work takes a lot of time.
Megan: Yes, and I’m working through it and moving towards fostering a more positive spin on these things.
Celebrate the Victories
Megan: Speaking of fostering positive spins, I did recently have a victory with respect to my Lichen Sclerosus.
There was a rule in our handbook that the faculty follows where the rule stipulates when working with the public you can only wear a green polo shirt with khaki or navy pants. I was struggling to find navy or khaki pants that were comfortable and I would wear. Thus, I told my program chair, “Hey I have Lichen Sclerosus, this is what it is, I can wear pants, and I wish there was a different rule in the handbook for what we can wear because someone else might come along with a different skin condition that cannot wear pants”. Consequently, they send the handbook to the whole faculty for revision. I submitted my opinion and they changed the policy.
Jaclyn: Yay! That is amazing. Good on you for advocating on behalf of yourself and others.
Megan: Little victory there that made me super proud!
Reflecting on Megan’s Journey
Jaclyn: Think about when you were struggling the most and where you are now, how have you changed?
Megan: I think I’m better at handling the emotional ups and downs of living with Lichen Sclerosus. Today, for example, I was upset about not being able to wear pants, but it wasn’t all-consuming to the point where I couldn’t enjoy my dinner and time with my family. So that’s a big change. I have tools in my toolbox now and I can manage flare-ups and emotional upsets.
I feel a lot more stable to where I was in November, but I have not and I don’t think I ever will return to how I used to be before Lichen Sclerosus. And that goes back to grief and grieving the loss of the person you were; I don’t think that person will return like I thought I would. This is my new normal and I have to learn how to be OK with it. It helps now knowing I have a good team – pain therapy, pain clinic, pelvic floor PT, etc – and knowing I have a good support system.
Jaclyn: It seems like it’s about being OK with not always being OK.
Megan: I think I needed to learn what my new normal is and know my limitations and boundaries and find peace with that.
Jaclyn: And that can take time. For some people it takes a couple of months, for others, it can take years. I’m so happy to hear you are in a better place emotionally with it and that you have a lot of tools, resources, and support.
Megan C – Alabama, United States
I’m humbled and grateful to you both for your specific descriptions of your body and how it/you feel, sharing the heartaches and coping strategies for soothing yourselves within the complex mix of emotions about a disease that sounds too cruel to be true. Christine