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Jaclyn’s Lost Labia Journey: Surviving Alone

Jaclyn’s Lost Labia Journey: Surviving Alone
Watch this week's interview.

Listen to the Podcast here:

Introduction and Some Exciting New Announcements!

Hey! Welcome to the Lichen Sclerosus Podcast show notes. I have a very special LS Warrior with us today, Jaclyn, who is going to share the story of her journey with Lichen Sclerosus. Her progression from feeling alone and hopeless to empowered and thriving is captivating! Jaclyn is truly a beacon of light in our Lichen Sclerosus community and her story is sure to captivate you.

Before we jump into her story, I want to thank our sponsor, the Lichen Sclerosus Support Network (LSSN) for making this podcast possible. LSSN is helping bring information, education, and most importantly support to all Lichen Sclerosus warriors.

LSSN logo, a teal heart and white letters reading LSSN through the heart with a purple background.

Be sure to follow them on IG and FB @lichensclerosussupportnetwork. Continue reading to the end for exciting announcements coming from LSSN!

Jaclyn’s First Warning: Painful Sex

Jaclyn started having symptoms almost a decade ago in her early 20s. Her first symptom of Lichen Sclerosus was painful sex. In the beginning, sex was uncomfortable; it wasn’t painful per se, but something felt off. Later into her 20s she experienced pain and tearing during sex. She would sometimes notice a small amount of blood cleaning up after sex. The pain and tearing only got worse over the years.

How Painful Sex Impacted Jaclyn’s Sex Life and Made Her Feel Alone

During this time Jaclyn had a few partners and obviously, painful sex impacted her relationships. Her painful experience made Jaclyn feel extremely alone. None of her friends had problems during sex. No one spoke about pain and certainly, no one mentioned tearing during sex. Accordingly, she felt alone and as if there was something deeply wrong with her.

Importantly, she didn’t tear every time she had sex, nor was the pain level constant. Sometimes she felt discomfort, other times intense pain and tearing. She realized she was different from her friends in that she required a lot more mindfulness and planning regarding sex.

For example, she had to be mindful of the frequency with which she had sex. She couldn’t have sex one day after the other because she had to give herself enough time for the tears to heal. However, she couldn’t wait too long between sex, because sex would then be incredibly painful.

*To learn more about painful sex, tearing, and steroids, check out: lssupport.net/drjill

How This Impacted Jaclyn's Relationships

Obviously, this hurt some of her relationships. Because of tearing and pain, Jaclyn would sometimes feel reluctant to engage in sex, thus making her partners feel undesired. This wasn’t the case, however, Jaclyn just didn’t understand the disease behind her confusing symptoms, and accordingly, she didn’t know how to communicate this to her partners.

Image of a person holding up a Nike Shoe. Jaclyn thought her vagina was like a new pair of shoes that needed to be broken in because of her experience with painful sex.

Jaclyn likened her vagina to a pair of new shoes needing to be broken in. For instance, when you get a new pair of shoes, breaking them in can be painful. However, if you walk in them frequently, you adapt and the pain reduces until they become comfortable. Thus, in Jaclyn’s case, having sex would be painful the first time, but if she had frequent sex, she could get to the point where sex would just be a bit uncomfortable. 

Nonetheless, she knew something wasn’t quite right.

Feeling Alone and Dismissed

During this time, Jaclyn had reported her symptoms to doctors at various clinics. Each one dismissed her symptoms as being stress-related or said it was because she was too small down there and therefore it was normal to feel pain. 

Shockingly, one doctor even encouraged her to drink wine before so it wouldn’t hurt! Can you believe that?!

Image of a glass of red wine with Christmas lights in the background. This picture represents the advice she was given by a doctor to drink wine to relax so sex wouldn't hurt.

The First Time Jaclyn Heard the Term Lichen Sclerosus: Her Diagnosis

Finally, in the summer of 2019 at 31 years old, Jaclyn’s general physician diagnosed her, Lichen Sclerosus. She had never heard this name before. 

Jaclyn’s doctor informed her it was an autoimmune condition that may have a genetic component. Further, she told Jaclyn, Lichen Sclerosus was most common in post-menopausal people with vulvas, and it increased her risk of vulvar cancer. After this, Jaclyn doesn’t remember the conversation in detail; she was overwhelmed by words like ‘autoimmune disease’ and ‘cancer’. Her anxiety immediately kicked in; her mind started racing.

Jaclyn's doctor wrote her a prescription for Clobetasol and told her to apply daily. 

The Aftermath of Her Diagnosis: Processing Emotions Alone

Since her doctor didn’t provide much information on Lichen Sclerosus, what it entailed, how to treat, etc., Jaclyn did what many of us LS Warriors do — she went home and googled Lichen Sclerosus.

No Information to be Found

However, when she entered ‘Lichen Sclerosus’ into Google, she couldn’t find much information other than it being autoimmune and treated with steroids. Her dismay turned to horror when she decided to Google images of vulvas with Lichen Sclerosus.

*To my readers/listeners out there: do not do this! Especially early in your diagnosis.

Understandably, this caused Jaclyn significant distress, anxiety, and fear. She was terrified of what this all meant for her future. She had no idea what she could and could not do. For instance, she thought she couldn’t have sex, exercise, wear certain clothes, etc. Between the lack of information, the images she saw, and the prospect of developing cancer, Jaclyn spiraled into a very dark place.

Feeling Alone: No Sense of Community

She felt completely alone in her diagnosis. She didn’t know of anyone else with Lichen Sclerosus and thus turned to online support groups to try and find a human connection.

Unfortunately, the Facebook group she found wasn’t a good fit for her, and she left shortly after joining. For the next year and a half, she was completely alone with Lichen Sclerosus. Of course, she told friends and family and they were extremely supportive, but no one understood what she was going through physically and mentally.

Image of person looking sad and alone at their desk representing how alone Jaclyn felt in her diagnosis.

After her general physician diagnosed her, she referred Jaclyn to be followed up with by a gynecologist. However, this gynecologist had a nine-month wait-list. So, Jaclyn had to wait alone for almost a year to start getting real answers about Lichen Sclerosus.

Taking Sex Off the Table for a While

Jaclyn was married when she was diagnosed with Lichen Sclerosus. Her husband knew about sex being painful, but like Jaclyn, never understood why. Her husband was incredibly compassionate and understanding. He told her they would take all the time they/she needed.

Despite not having penetrative vaginal sex for over a year and a half, they maintained a sex life and intimacy. 

How To Maintain Intimacy and Feel Less Alone Without Penetrative Sex

For those of you in a similar place (i.e., unable to have penetrative sex due to pain), Jaclyn suggests the following as examples of ways to maintain intimacy:

  • Play with your partner's hair
  • Give each other a massage
  • Hold hands and cuddle
  • Kiss each other
  • Try things like couples meditation
  • Flirt with each other
  • Grab each other's butt; tell them you think they are sexy
  • Play with your senses, temperatures, etc.
  • Oral sex
  • Play and experiment with different sex toys
Image of a couple sitting and holding each other by the beach, demonstrating that not all sex/intimacy has to be penetrative sex. Maintaining intimacy with your partner is important to feeling less alone.

This list is by no means exhaustive – but get creative and explore different ways to keep intimacy alive. Listen to my podcast episode on how to maintain a healthy relationship with Lichen Sclerosus here: lssupport.net/relationships

How Sex Therapy Helped

Jaclyn sought help from a sex therapist and she continues her work with her to this day. Her therapist helped her work through specific Lichen Sclerosus fears and anxieties, intrusive thoughts, and new behaviors that developed after her diagnosis. For example, Jaclyn started compulsively checking her vulva; a behavior that worsened her mental health. 

Unfortunately, Jaclyn lost most of her labia minora and her clitoral hood had fused to her clitoris. Consequently, Jaclyn felt her vulva was abnormal, disgusting, and ugly. Sex therapy helped her overcome her dysmorphia towards her vulva. 

While sex therapy was beneficial and she had someone to talk to, she still couldn’t completely shrug off the sense of being alone in her diagnosis.

Pelvic Floor Therapy

At this time, Jaclyn also saw a pelvic floor physical therapist. Her experience with pelvic floor physiotherapy was overwhelmingly positive.

First, the therapist took down Jaclyn’s medical history and asked her what she wanted to accomplish. For Jaclyn, she wanted to reduce pain during sex. During the clinical exam, her therapist was incredibly gentle, compassionate, and informative.

Before the exam, she asked Jaclyn if she had a history of sexual trauma, to which she answered yes. Because of this, her therapist adjusted her approach and was incredibly soft, gentle, and compassionate during the exam. Each time she was about to do something, such as shift her finger to the left, she let Jaclyn know beforehand so she wasn’t caught off guard.

While she worked with dilators for a few weeks, she stopped shortly thereafter because she was in too much of a flare. At the time, Jaclyn had only been using her steroids for three weeks. Thus, Jaclyn stopped the dilators and allowed her body time to heal and let the steroids work their magic.

Image displaying the anatomy of the pelvic floor. Even if you are unable to use dilators, you can benefit from learning how to relax the pelvic floor muscles in physiotherapy.

Nevertheless, she highly encourages pelvic floor physiotherapy at any stage of your Lichen Sclerosus diagnosis as your therapist can teach you some ways to relax your pelvic floor and destress. And we all know how important reducing stress is for Lichen Sclerosus.

Conclusion

To summarize, Jaclyn began her Lichen Sclerosus journey with little information in the beginning. While she had started to compile a team (i.e., her doctor, her sex therapist, her pelvic floor physiotherapist, her husband, friends, and family), she felt very alone in her diagnosis. She longed for community and connection.

Come back next week to hear about how Jaclyn found her community and how she is now able to have amazing, pleasurable, pain-free sex!

*

Did any parts of Jaclyn’s story resonate with you? Let me know! Email me at Kathy@lichensclerosuspodcast or DM me at @lichensclerosuspodcast on Instagram.

Exciting Announcement!

I am super excited to announce that Jaclyn will be starting her blog called The Lost Labia Chronicles, sponsored by the LSSN, which will go live next Tuesday (March 2nd, 2021).

Jaclyn is freaking amazing, and you will definitely want to follow her blog. I have watched this woman go through an amazing transformation, and her stories, her advice, and her wisdom are next level.

In her blog she will take you through her journey, you will get all the raw, unfiltered emotions and feelings and learn how she got out of that dark space. Her story is one of hope.

You do not want to miss this!

Image of The Lost Labia Chronicles logo in a purple and orange background with Facebook and Instagram logos. @thelostlabiachronicles is the handle for each one.

Subscribe to her blog at lssupport.net/jointllc to get updates and notifications. Her first blog post will go live on March 2nd, but if you sign up before, you’ll get a sneak peek at her first post.

If you want to reach out to Jaclyn, you can DM her on Instagram or Facebook @thelostlabiachronicles or via email at lostlabiachronicles@gmail.com

Virtual Meetup Information

We meet every other Saturday from 2-4 pm and/or 7-9 pm Eastern Standard Time. This is your opportunity to share your diagnosis story, what is working for you and what isn’t, and ask a question to the group. I have met so many incredibly strong LS warriors through these meetups, and I would love for you to join our community. 

Sign up at lssupport.net/connect for notifications and updates! Our next meetup is on March 6th. I cannot wait to meet you!

Resources:

To learn more about painful sex, tearing, and steroids, check out: lssupport.net/drjill 

If you want to know how Lichen Sclerosus impacts your libido and how to get it back, check out: lssupport.net/libido

By Jaclyn

I am the author of The Lost Labia Chronicles, a blog about Lichen Sclerosus, Sex, and Mental Health. I was diagnosed with Lichen Sclerosus in 2019 but had been symptomatic for over a decade. My mission is to provide support and hope to others with Lichen Sclerosus.

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