What You Need to Know About Timelines and Lichen Sclerosus

Introduction

Hey, beautiful soul. Since you were diagnosed with Lichen Sclerosus, have you ever given yourself a timeline to get better? Perhaps you gave yourself timelines concerning seeing relief from your medication, getting out of a flare, to getting into remission? Have you given yourself timelines and expectations for when you will be able to have sex again? Have these timelines caused you mental distress? Did you feel even more depressed and discouraged than you were when you initially set the timeline? If so, this post is for you!

In this post, I’m going to address a facet of mental health I struggled with: giving myself timelines and hard deadlines on when I should feel better physically and be able to do certain things. Importantly, this post will build on similar themes from my post about progress not being linear. If you haven’t read it yet, click here to read my previous post about progress, and then come back to this post. I begin by sharing my experience with timelines early in my Lichen Sclerosus journey. Then, I discuss how the setting of timelines hurt my mental health. After, I share what happened when I began to let go of timelines, and, finally, I provide some helpful tips if you want to similarly try to let go of timelines.

Ways Timelines Can Manifest in Your Life with Lichen Sclerosus

I will share my experience and journey with timelines. However, before jumping into that, I want to highlight there are many other ways in which you might set yourself a timeline. For example, you may set a timeline concerning:

*This list is by no means exhaustive. Feel free to share in the comments or message me to share what you struggle with when it comes to timelines and Lichen Sclerosus.

My Early Experience with Timelines

Expectations for Symptom Improvement

To say I was mentally distraught when I was diagnosed with Lichen Sclerosus in 2019 is an understatement. You can read about my diagnosis story here or watch my diagnosis story here. While a part of me felt relief and validation in my diagnosis, this was quickly stifled by feelings of panic, fear, confusion, anger, desperation, hopelessness, and depression. 

My doctor handed me a prescription for Clobetasol and told me to use it daily until I could see a gynecologist. However, what she failed to disclose was any kind of timeline I could expect concerning seeing improvement with my symptoms. Thus, without any real understanding of what to expect, I assumed I would feel better fast. I thought using Clobetasol for Lichen Sclerosus would produce similar effects as taking Penicillin for strep throat. That is, typically once you start taking Penicillin, you feel progressively better with each day that goes by. After about 5 days, you are back to normal. Thus, I thought my trajectory would look similar to Clobetasol for Lichen Sclerosus. 

However, it did not. Instead, it took about 4 months to feel significant improvement with my symptoms, and even then, that 4-month trajectory was not a smooth line upwards. There were a lot of ups and downs during those early months. Some days I would feel good, somedays I would feel better.

Expectations for Dilator Progress and Sex

I began seeing a pelvic floor physiotherapist very early into my journey with Lichen Sclerosus; read about physiotherapy for painful sex here and dilators and physiotherapy here. Specifically, I sought out a pelvic floor physiotherapist to teach me how to learn to use dilators for painful sex. Initially, I gave myself a two-month timeline to be able to have pain-free sex again. However, this quickly proved to not be in the cards for me.

After experiencing an increase in burning and stinging after working with the dilators, I decided to stop working with dilators indefinitely. Looking back, I now see part of my difficulty with dilators at this stage in my journey was I rushed into it. I didn’t give my body space and permission to rest and heal; I didn’t allow the Clobetasol enough time to work and my fissures and tears to heal.

How Timelines Can Impact Your Mental Health for the Worse

A timeline is a certain amount of time it will take you to achieve a specific goal. For example, in 2 months I will be in remission. However, life seldom works according to our timelines, and LS goals are no different. Now, if you are determined to hit an LS goal is by a hard date, it can cause a lot of frustration, anger, confusion, and hopelessness when things go off track. Over time, this can really hurt your mental health, especially if you continue to give your healing hard timelines.

In my case, I thought I’d see relief from Clobetasol quickly. However, it took weeks to start getting some relief, and months to see significant improvement. Because I didn’t get the symptom relief I thought I was going to see by the date I had fixed for myself, I started sinking into an anxiety spiral. That is, I started to panic thinking, “my treatment isn’t working”, “I’ll never feel relief”, “I can’t live like this”, “what am I going to do”?

And then, when I didn’t hit my timeline for seeing success with dilators, I sunk into a bigger depression. I began to think I’d never be able to have sex again. I was terrified about what that meant for my relationship with my husband. 

Thus, imposing hard deadlines on my healing caused me a lot of mental distress and may cause you distress as well.

What Happened When I Got Rid of Timelines

Symptom Improvement and Remission

Importantly, when I look back on my journey, I see the real healing that happened when I gave up strict timelines; when I surrendered to the process and the unknown. Concerning my symptoms, I told myself I would just keep applying my steroids and try to work on stress reduction with my therapist. I’m now over a year and a half into remission with zero symptoms. I wouldn’t have ever that would have happened early in my journey, especially when my timelines for symptom improvement kept failing. 

Painful to Pain-Free Sex

When I didn’t hit my timeline for dilator success, I thought I was doomed to live a life without sex. I assumed it would either always be painful and I’d have to tough through it, or I would simply stop having sex altogether. But yet again, so much happened when I surrendered to the process and stopped self-imposing strict timelines onto my healing. I told my husband we needed to take an indefinite pause on sex. He was incredibly understanding and we both decided it would take the time it would take. If you’re curious to learn more about this conversation and how we navigated LS in our relationship, check out my three-part interview with my husband.

Now, things look very different for me. During that indefinite pause, I worked on myself mentally with a sex therapist, committed to mindfulness and meditation practice, found an amazing LS community (the LS Warriors), and gave my body time to rest and heal. For the last year, I have been able to have amazing, pleasurable, pain-free sex. I would have never thought this was possible when I was diagnosed. 

There is healing magic in stepping back and giving your body space to do the things it needs to do to help you feel better. 

And, when you get rid of timelines, that stepping back feels so much lighter now that the weight of the timeline pressure has been removed. 

Tips to Help You Let Go of Timelines with Lichen Sclerosus

It’s not easy to stop giving yourself strict timelines, especially if, like myself, you crave structure to, feel safe. With that said, if you want to try to overcome timelines, here is some advice:

Conclusion

In sum, many of us with Lichen Sclerosus give ourselves hard timelines concerning healing. While this may work well for some folks, it can be a source of stress and frustration for others. If you fall into the latter category, you may want to practice slowly letting go of timelines. I’ve highlighted some tips I found to be helpful with my journey, and I hope you find some to be helpful as well.

Reach Out To Me

Whether you want to contribute to The Grief Project or you want to chat with me personally, you can contact me in the following ways:

Instagram: @thelostlabiachronicles

Facebook: @TheLostLabiaChronicles

Email: lostlabiachronicles@gmail.com

Virtual Meetups

Do you want more support in your journey with Lichen Sclerosus? Consider joining the Lichen Sclerosus Support Virtual Meetups. We meet bi-weekly, every other Saturday from 2-4 and 7-9 pm EST. These meetups are a safe space for you to share your story, cry, celebrate, vent, ask questions, and be a part of a community of support. Click the button below to sign up!

Disclaimer:

*The Lost Labia Chronicles does not provide medical advice or engage in the practice of medicine. The information provided by The Lost Labia Chronicles is for education and entertainment purposes only and does not under any circumstances constitute medical advice. Please consult with your healthcare provider before making any changes to your healthcare plan.