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Introduction And Some Exciting New Announcements!
Hey! Welcome to episode six of season 2 of Lichen Sclerosus Podcast. Today we are joined by therapeutic nutrition consultant, LS warrior, and cancer survivor, Heather Cooan. Heather’s journey from how the medical system let her down to self-advocacy and taking control of her health and body is nothing short of incredible.
Her story will be told in two parts. Today, we begin with when Heather’s symptoms first began to manifest, how they impacted her life, and how she was repeatedly let down by the system.
Before we jump into her story, 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!
Early Symptoms and The First Instance of Being Let Down by the System
Heather had symptoms as early as she can remember, i.e., around 8-years-old. At this age, she experienced chronic itching.
One time, Heather was at the grocery store in line with her mom and she turned to her mother and said, “Mom, my vagina itches”! Her mother was mortified. Growing up, Heather’s mother assumed the itching Heather experienced was just chronic yeast and nothing to be concerned about.
This assumption was further solidified by several doctors who brushed off Heather’s symptoms as either nothing to be concerned about or chronic yeast infections. Thus, as early as 8-years-old, the medical system was letting Heather down. Instead of taking a deeper dive into what was going on, they dismissed her symptoms as non-concerning.
Growing up as a Teenager: Dismissed and Mistreated by the System
The pattern of being let down by the system persisted into Heather’s teenage years and early adult life. She had seen numerous doctors who repeatedly dismissed Heather’s complaints throughout the years. They would say things such as:
“Just wear different underwear”.
“It’s probably a hygiene issue; wash your vulva better”.
“It’s just yeast”.
Thus, Heather threw her hands up and resigned. She stopped seeing doctors because she was repeatedly told nothing was wrong. As many of my LS warriors know, being dismissed by the system takes its toll on your mental health. You start believing it is all in your head, or you give up altogether on trying to seek a diagnosis because you accept the narrative of nothing is wrong with you.
Heather dealt with her symptoms silently and alone, trying almost every OTC product she could get her hands on to deal with the itching. Of course, during this time, Heather no longer sought medical attention. In fact, it wasn’t until she was diagnosed with Lichen Sclerosus and cancer that she saw a doctor again.
Adulthood and the Intense Progression of Heather’s Symptoms
Obviously, as time went by, Heather’s symptoms progressed, causing more pain and discomfort as the years went by. By the time she was 37 years old, her symptoms were unbearable.
At 37 years old, Heather was working as a high-power marketing executive, growing revenue for tech companies, and being groomed to go in as Chief Revenue Officer. As you could imagine, this position came with a tremendous amount of stress.
At this point, the skin on Heather’s vulva resembled shiny white paper. She was in so much pain it was difficult to walk. She experienced tearing and burning making it difficult for her to walk.
How Mistreatment by the Medical System Impacted How Heather Dealt with Her Symptoms
Despite severe pain and discomfort, Heather accepted her symptoms. The narrative of there being nothing wrong with her, reinforced by many doctors over the years led Heather to believe this was just her fate to deal with. Indeed, she had dealt with these symptoms her whole life.
Importantly, during this time, she developed a tear that would not heal. Eventually, a 1cm growth grew out of this tear. The growth was solid and resembled a mushroom. The itch and pain associated with this growth was severe. Heather described it as a burning searing itch/pain.
It is indeed disheartening to think about the extent to which Heather suffered over the years because of a system that repeatedly let her down.
The Impact of her Symptoms on her Relationship
Heather was married at the time her symptoms were at their peak. Obviously, this damaged her relationship with her husband. They weren’t having sex, of course, as one would imagine with symptoms like Heather’s.
Furthermore, during this time, Heather didn’t talk to her husband about what she was experiencing. She had internalized guilt about her symptoms. Specifically, because the system repeatedly let her down and doctors dismissed her, she came to believe she had an issue with self-harm. When she was stressed, the itch was worse. Accordingly she would scratch where it itched and consequently she would tear. She began to think:
“Am I doing this to myself? Am I self-soothing? Is this my fault”?
Obviously, she and her husband were not having sex at the time. This, coupled with the fact Heather wasn’t upfront with him about what was going on, made for a rocky time in their relationship.
*For my listeners and readers: it is so important to have tough conversations with your partner so they know where you are at. For more on how to have a healthy relationship with LS, click here.
Taking Matters into her own Hands
Critically, it took time for the tear to turn into a growth; this occurred over approximately 6-8 months. During this time, Heather began to take her health into her own hands. Doctors and the system had previously been unhelpful. To quote Heather:
“Doctors had done me wrong my entire life”.
Accordingly, Heather did her research and came across Lichen Sclerosus. Her symptoms matched exactly and Heather realized this is what she had. Furthermore, she read that left untreated for long periods, Lichen Sclerosus can develop into cancer.
And what is one of the hallmarks of cancer? A growth. At this point, Heather realized in addition to Lichen Sclerosus, she had cancer as well.
The Search for a Specialist
Once Heather realized what was behind the cause of her symptoms, she began to look for a vulvar specialist to confirm her diagnosis and start her treatment.
She found Dr. Joseph Brooks who is a vulvar specialist in downtown Phoenix and she got in the next day. The receptionist told Heather they regularly see people with Lichen Sclerosus; this was a sign that Heather was going to the right place, as many gynecologists offices Heather spoke with had no clue what Lichen Sclerosus is.
*To my listener/reader: when you are researching a doctor, have a list of questions, know what the answers are, and if their answers don’t match up, or worse, if they don’t know what you are talking about, keep looking!
The Consultation: A Surprising Change from a Long History of Being Let Down the System
Dr. Brook’s was incredibly professional and kind. First, he sat Heather down in his office and took her whole gynecological history and symptoms. Second, he asked Heather what she was there for and how he could help her. Heather responded she wanted to get confirmation and treatment for LS, and she may have cancer. After their discussion, Dr. Brook’s performed a clinical examination.
When Dr. Brook saw Heather’s vulva, he immediately confirmed LS; he said it was textbook Lichen Sclerosus. Blown away, he asked Heather how long she had been suffering like this. She confided she had been like this since she was a kid and that doctors didn’t care and wouldn’t pay attention to her symptoms.
He noticed the growth was solid, which is an indication of cancer. Dr. Brooks performed a punch biopsy (this was incredibly painful) on the growth and told Heather he’d be in touch when the results came back from pathology.
Four days later, during a work happy hour, Heather received a phone call confirming cancer. Despite diagnosing herself with cancer, the call was a shock to her system, nonetheless.
After the Cancer Diagnosis
Dr. Brooks treated Heather with Clobetasol and referred her to Dr. Bhoola, a vulvar oncologist. Dr. Bhoola would treat the cancer, and once the cancer was treated, she was to return to see Dr. Brooks to manage the Lichen Sclerosus.
The Prognosis from the Vulvar Oncologist
Unfortunately, Heather’s experience with Dr. Bhoola was negative. She probably saw him for a total of 15 minutes, from consultations, pre-op, surgery, etc. Importantly, Heather highlights this is her experience; many people have wonderful experiences with Dr. Bhoola!
The type of cancer Heather had was stage 1B infiltrating squamous cell carcinoma, moderately differentiated in the vulva, and it was keratinizing (i.e., it developed out of a tear).
Because Dr. Bhoola is a teaching doctor, for Heather’s first consultation she was seen by his resident. The resident took her history, symptoms, let her know what to expect, etc. With vulvar cancer, the first line of defense is surgery. Ideally, they can remove all the cancerous tissue, and then it’s a question of managing your Lichen Sclerosus.
What the Surgery Would Involve
After the initial consultation with the resident, Dr. Bhoola came in for the exam and informed Heather the cancer was growing and he wanted to do surgery immediately. Critically, the surgery he wanted to perform would involve removing the clitoris, as the growth was right next to the clitoris.
At this point, Heather knew vulvar cancer had a 40% recurrence rate. She was not willing to sacrifice her clitoris, a key organ for sexual function, especially since she may have to battle this again.
Heather asked if he could remove part of the clitoris instead of all of it. He refused, saying the entire clitoris must be removed.
In sum, because doctors and the medical system let Heather down since she was a child by dismissing her LS systems, Heather’s LS went untreated for almost 25 years. Consequently, her Lichen Sclerosus progressed into cancer. Heather’s story boldly highlights the danger of doctors not having enough knowledge about Lichen Sclerosus, and the devastating consequences of being let down and ignored by the medical system.
This is the story of Heather’s Lichen Sclerosus and cancer diagnosis. In next week’s episode, we move from Heather being let down by the system to Heather taking her health into her own hands and advocating for her body and treatment. It is a story of strength, empowerment, and the importance of knowing your values and advocating for them. Stay tuned, because next Friday we will hear how Heather went from excruciating pain from Lichen Sclerosus and cancer to cancer-free, with her Lichen Sclerosus in remission.
What part of Heather's story resonates with you? How has the system treated you? Let me know! Email me at Kathy@lssupport.net or DM me at @lichensclerosuspodcast on Instagram.
Or better yet! Why don’t you join us for our next Lichen Sclerosus virtual meetup and tell us how the system has failed you.
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. Perhaps share your experience with how the system failed you!
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 20th. I cannot wait to meet you!
Exciting Announcements From LSSN You Do Not Want To Miss!
If you haven’t already subscribed to The Lost Labia Chronicles yet, go subscribe here. My girl Jaclyn is about to drop her second blog post next Tuesday, March 16th.
For nutritional consultations, see Heather’s website: https://heathercooan.com/
If you are battling vulvar cancer, check out the vulvar cancer awareness forum here: https://www.facebook.com/vulvarcancerawarenessforum/
If you are in the Phoenix area, check out Dr. Joseph Brook’s here: https://www.arizonaspecializedgynecology.com/provider/joseph-brooks-md
Dr. Bhoola: https://arizonaoncology.com/covid19/