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Introduction and Excited Announcements
Hey! Welcome! Here we are at episode ten of Season 2 of Lichen Sclerosus Podcast. I’m so glad you are here with us today! In today’s episode, we are joined by Jen, who is one of my OG followers, and my ride-or-die ladies! I’m so thrilled she is here with us to share the amazing story of her journey with Lichen Sclerosus. Jen’s journey involves a traumatic birth and a lot of stress to her vulva and vagina. She discusses what this process was like, how her symptoms manifested after the birth of her daughter, her diagnosis, and how she now deals with stress and Lichen Sclerosus.
Lichen Sclerosus Support Network – A Huge Thank You To Our Sponsor!
Before we jump into today’s episode, however, 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.
Be sure to follow them on IG and FB @lichensclerosussupportnetwork. Continue reading to the end for exciting announcements coming from LSSN!
The Stress of Getting Pregnant and a Traumatic Labor
Jen experienced some difficulty in getting pregnant. During this time, they discovered her difficulty was attributed to her having low progesterone. After they discovered this, Jen was put on some supplements and got pregnant.
Jen had a pretty normal pregnancy. However, her labor was the complete opposite. After a 28-hour labor, Jen immediately hemorrhaged. This was traumatic and caused a great deal of stress for Jen.
Furthermore, in addition to the stress of the hemorrhage, Jen had a horizontal episiotomy.
Just 6 weeks post-labor, Jen hemorrhaged again, alone in her bathroom. She was rushed to the hospital and the same OB that saved her life after the birth of her daughter saved her life once again. As it turned out, Jen had retained the placenta from a rare condition called placenta accreta, where the placenta goes too deep into the uterus, causing it to be weighed down and hemorrhage.
An emergency D&C was performed, during which Jen tore, and thus needing stitches. During this time her episiotomy was still healing, and the tear was right next to it. Suffice it to say, she experienced a lot of stress and trauma in the area.
Early Symptoms of Lichen Sclerosus
After giving birth to her daughter, Jen began experiencing symptoms of Lichen Sclerosus (although she didn’t know what it was at the time). Specifically, Jen reported feeling irritation and a lot of itching. In her gut, Jen knew something wasn’t right. She noticed some tearing on the vulva, however, because she would scratch to relieve the itch, Jen isn’t sure whether she was tearing on her own or if it was due to the scratching.
When Jen saw her doctor for her annual check-up, she mentioned the itching. Specifically, the itching was isolated to the left side of her vulva. Her doctor checked her out, said everything looked normal, but to keep an eye on it. Because Jen had a wonderful rapport with her doctor, and because she had been her patient for over a decade, she trusted her and moved on.
However, the itch wouldn’t give up.
How Stress Impacted Jen’s Symptoms
Despite persistent and unrelenting itching, it took some time for Jen to return to the doctor’s office. This is because her husband was diagnosed in December of 2017 with Hodgkin’s Lymphoma. Consequently, Jen prioritized her husband and his treatments.
Her next annual appointment was in 2018, and again, Jen mentioned the itching. Once more, the doctor said she didn’t see anything abnormal, but noted she was under a great deal of stress and the stress might be the culprit.
It would be an understatement to say this caused a lot of stress for Jen. A new mom with a toddler, whose husband is battling cancer, she had to coordinate his treatments, take care of their toddle, and juggle a full-time job which required a lot of travel.
Of course, the stress didn’t help the itch; it got much worse!
Stress and Jen’s Symptoms: The Situation Becoming Worse
In 2018, Jen’s symptoms were all-consuming. She thought about them 24/7 and would eventually look up her symptoms online. Of course, Google said ‘vulvar cancer’, and, deeply distressed, Jen thought this was what she had.
Accordingly, Jen went back to her doctor at the end of June and saw the physician’s assistant. Again, she was told nothing looked abnormal.
Suggestions from the Physician’s Assistant
The physician’s assistant made some suggestions to Jen. For example, she suggested Jen:
- Switch underwear if/when she noticed she got sweaty
- Soak in warm water
- Wear loose pants
- Try diaper rash cream
Jen tried all this in addition to trying different over-the-counter creams and ointments. For instance, Jen tried Desitin, Aquaphor, Triple past, Calmoseptine, etc. She even experimented with plucking her pubic hair as she thought perhaps this was the cause of the irritation.
Chalking it up to Stress
Because none of the suggestions worked, and Jen got no relief from the over-the-counter products, she attributed it all to stress.
2018 was a miserable year full of stress and confusion for Jen. During this year, Jen’s doctor tested her for herpes simplex 1 and 2, Epstein Barr, Lyme’s disease, etc. Of course, they all came back negative.
Advocating for Herself and Not Settling for a Stress Only Explanation
Despite acknowledging the deep stress Jen went through with her husband's cancer — which is now in remission, yay! — and the stress and trauma of 28-hour labor with an episiotomy and hemorrhaging, Jen knew it wasn’t just stress. Accordingly, Jen went back again to see her doctor about the itch.
However, unlike previous visits, this time the doctor said she saw something. As she examined the left side of Jen’s vulva, she noticed a white patchy texture of the skin. Her doctor stated I think you might have Lichen Sclerosus. At the very least, she stated the skin had a Lichen component and this would explain the itch.
Thus, her doctor gave her a prescription for a steroid ointment. Because Jen has many allergies, her doctor prescribed her Betamethasone ointment. Jen was instructed to use this ointment 2x daily for 2 weeks, then 1x daily for a week. If she was OK after this, she would use hydrocortisone 1x a day, every day.
While the steroid and hydrocortisone helped, Jen, noticed she developed a small ulcer on the right side of her vulva, after a trip to NYC to visit her sister. Initially, Jen assumed it was related to her Lichen Sclerosus and all of the walking she did on her trip. The ulcer slowly went away, however, even when it was healed, Jen was left with a lingering ache in that spot. Specifically, she noticed it would ache a week after her period.
She told her doctor about this and the doctor suggested a biopsy, to which Jen consented. The biopsy results showed chronic severe irritation and inflammation.
Her doctor conducted a couple more tests and concluded she had episiotomy scar endometriosis.
The doctor explained the cyclic pain with her menstrual cycle, in addition to the stress and trauma to the area was because of this type of endometriosis.
To help with this, Jen’s doctor has her skip her period every month with birth control. This helps Jen with the flare from the spot where the ulcer was as well as her Lichen Sclerosus symptoms.
How Jen Would Coped Mentally
Understandably, the stress of her traumatic labor and her husband getting cancer, as well as going years with an uncontrollable itch that was being chalked up to stress, Jen was struggling mentally.
During 2017-2018, Jen didn’t talk to anyone about her symptoms, other than her husband. It caused her a lot of stress; she was confused and irritable. When she started to open up to friends, later on, they would often say it’s probably stress and something easy to take care of. However, she did open up to a work buddy who was supportive and compassionate.
Jen notes topics like our genitals and infertility are kind of taboo. Thus, many of us sit alone with our symptoms and suffer in silence.
Where is Jen Now with Her Lichen Sclerosus
Jen can keep her symptoms under control with hydrocortisone, using Betamethasone during flare-ups. Sex is now way less painful than it used to, and she is super grateful for this. Finally, Jen never got any fusing. I suspect this may be because of how hard Jen advocated for herself and how frequently she had the doctors look at her vulva. Because of this, the doctor caught the white spot early and was able to get her on proper treatment before the Lichen Sclerosus progressed any further.
Stress and Support Groups
After Jen was diagnosed, her support circle slowly grew. She joined a couple of Facebook groups, and also attended the Lichen Sclerosus Support Network’s virtual meetups. Jen described the meetup as very encouraging to see other faces of people with Lichen Sclerosus, because other than herself, she didn’t know anyone with it.
Shortly after, Jen joined the Lichen Sclerosus Warriors membership, a support group off social media. Jen felt very supported in this group. Because the membership is off social media and because the Lichen Sclerosus Warriors membership is all about the TMI life, Jen felt comfortable sharing the most intimate parts of her mental life and LS because it was so secure and private. This group has been wonderful at helping Jen deal with her stress levels.
If you want access to the membership, join the wait-list.
Stress and Counselling
Further, the members of the Lichen Sclerosus Warriors encouraged Jen to seek a counselor for years of stress and anxiety. Jen is now seeing a counselor and in a really good place with her Lichen Sclerosus.
In sum, Jen is a WARRIOR! She lived through extremely traumatic labor, hemorrhaged, and nearly died twice, supported her husband with Hodgkin’s Lymphoma, and got her Lichen Sclerosus and episiotomy scar endometriosis. Looking back, it could have been all the trauma and stress that triggered Jen's Lichen Sclerosus. Of course, I cannot say that with certainty.
I am SO grateful to have had Jen with us today and for sharing her story with us.
If you want to reach out to Jen, you can message her on Twitter and/or Instagram @jenpantala.
Virtual Meetup Information
Did you learn anything new from this episode? Are you curious to delve deeper into the realm of nutrition and diet? Let me know! Email me at Kathy@lssupport.net or DM me at @lichensclerosuspodcast on Instagram.
Better yet, why don't you tell us at our Lichen Sclerosus Support Virtual Meetup!
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. Perhaps share your experience with appointment anxiety! 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 tomorrow, April 3rd. I cannot wait to meet you!
Exciting Announcements From LSSN You Do Not Want To Miss!
My girl over at The Lost Labia Chronicles just dropped her third blog post last Tuesday. If you haven’t read it yet, check it out here: https://lssupport.net/self-blame-facing-my-inner-demon/
In this post, Jaclyn discusses a critical aspect of mental health and Lichen Sclerosus. Specifically, she delves into the topic of self-blame and proposes a three-phased approach to help work with these types of feelings.
Furthermore, if you haven’t yet, be sure to subscribe to The Lost Labia Chronicles so you get all the juicy updates and notifications here: lssupport.net/jointllc
Also, another exciting announcement, the Lichen Sclerosus Support Network will be going live on April 19th with an online directory of specialists such as gynecologists, naturopaths, functional medicine doctors, dermatologists, etc. You’ll be able to plug your city or state/province into the search bar and find LS specialists near you! If you’ve ever struggled to find a vulvovaginal specialist or someone familiar with LS, you will want to keep your eyes open for this to drop.