Introduction

Many folks have questions about lichen sclerosus and pregnancy. We address the science behind lichen sclerosus and pregnancy here. However, we want to address this from a more lived experience perspective today. A while back, I opened a call on my Instagram page for folks who were willing to share their pregnancy and lichen sclerosus experience. Today, I’m sharing Lisa’s LS and pregnancy journey to help raise more awareness about LS and pregnancy.

Lisa and I met for a virtual call to chat about her experience. What follows is my re-telling of her journey. 

Lisa’s first pregnancy

Lisa had had LS symptoms since she was a little girl. However, back then, the doctors were clueless as to why she was always itchy and uncomfortable. Consequently, she had to just kind of live with these symptoms. 

By the time she got pregnant at 25, she was symptomatic but still did not have an official diagnosis. 

Lisa’s pregnancy was certainly no walk in the park. Throughout the whole nine months, she struggled with vulvar itch, yeast infections, and thrombosed hemorrhoids. The thrombosed hemorrhoid was excruciating, but her OB-GYN was less than compassionate about it. They removed the hemorrhoid surgically without any numbing. 

Lisa gave birth via a C-section because the size of her son's head was too big, and the doctor was concerned about it being able to pass through the vagina. 

Getting Diagnosed with Lichen Sclerosus

After giving birth to her first son, Lisa decided she wanted to change doctors, as she did not appreciate how her OB-GYN treated her throughout her pregnancy – i.e., with zero compassion, little information, no support, and poor treatment of her constant vulvar itch and thrombosed hemorrhoids. 

She booked in with a new OB-GYN, who, upon a standard clinical examination of her vulva, looked at Lisa and very casually noted, “You know you have lichen sclerosus, right”?

Of course, no, Lisa did not know this; it was a complete shock to her system. Her new doctor briefly explained what LS was, prescribed a topical corticosteroid, and explained the importance of treating and vulvar cancer prevention. 

After getting her diagnosis, Lisa needed to take a day off work to process. It felt like the wind was knocked out of her, and she collapsed in the hospital staircase as she left. She called her husband in tears, who was very compassionate. She also told her parents and sister right away, as she has a very good relationship with them.

It took a little more time for her to open up and tell her friends. Sometimes, the conversations were awkward because there is still a lot of stigma around the genitals and our vulva, and, accordingly, many folks still are not comfortable having conversations around them. 

Lisa’s Second Pregnancy

When Lisa got pregnant with her second child, she was afraid of what this meant now that she had her LS diagnosis. With little information about LS, she assumed that people with LS couldn’t give birth vaginally and that she had no choice but to get a C-section again.

Spoiler alert – folks with LS can totally have a vaginal birth if this is what they want. Every person with LS should make the decision about what is best for their bodies. Read more about giving birth with LS here.

For her second pregnancy, Lisa was monitored by both a dermatologist and a gynecologist every 3-6 weeks, alternating between the two. 

Symptom-wise, despite being treated with topical corticosteroids, Lisa still had itch and yeast infections throughout the pregnancy. However, this time around, because she had a better team and a diagnosis, they were able to treat the yeast and complications much faster. 

She opted for a C-section for delivery and was glad she did, as her second son’s head was just as big as the first one.

Post Partum

Luckily, after the first couple of weeks of recovering from the C-section, things started to improve for Lisa in terms of LS symptoms.

She also began therapy to help her process the shame, frustration, anger, and sadness that came from her LS diagnosis. She realized stress is a big trigger, and this helps her be more aware when her symptoms start to flare. Lisa is also working with a pelvic floor PT and dilators to help improve the health of her pelvic floor, as her pelvic muscles became overactive and in constant tension from all the trauma of having LS.

Advice for Folks with LS who are Thinking of Getting Pregnant

First and foremost, Lisa wants folks to know that there is no guarantee on how your body will react during pregnancy. Things may get worse, stay the same, or get better. However, even if they get worse like they did for her, she wants you to know that they can still get better again, and you can get your LS under control.

She recommends building a strong pregnancy team – hers consisted of a dermatologist and gynecologist. You can also consider a birth doula, a midwife, a pelvic floor physical therapist, etc.

Finally, if you are not happy with how your doctor is treating you, get a second opinion and/or change doctors. You deserve the best care during your pregnancy.

Conclusion of Lisa's Lichen Sclerosus Pregnancy Journey

In conclusion, I want to extend a huge thank you to Lisa for bravely sharing her LS story with us. I know many folks in the community appreciate hearing first-hand accounts, so I hope this helps some. We will have more LS pregnancy stories in the future, so stay tuned!

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Reach Out to Me

Whether you are debating booking a support call with me, have a quick question, or want to share something related to my content, I can be reached via:

Email: Jaclyn@lostlabia.com

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Support Resources

FREE Lichen Sclerosus Virtual Meetup hosted by myself and Kathy of Lichen Sclerosus Podcast – sign up here.

Feel free to book a 1:1 call with me to discuss mental health or sexual health or have general questions about lichen sclerosus. Simply click this link to learn more about lichen sclerosus peer support calls.

LSSN Membership – sign up here.

Check out my LS resources page here for a more detailed list of free and paid support resources.