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Welcome to the second episode of Season 2 of Lichen Sclerosus Podcast! Today we have a diagnosis story from an amazing woman, Carrie Bock, who tells us about her journey from pain and shame with sex to acceptance and empowerment of herself and her disease. Keep reading to find out how Carrie moved from painful sex from Lichen Sclerosus to being in a loving marriage, with healthy, pain-free sex.
Carrie’s Christian Upbringing
Carrie grew up in a conservative, Christian environment. In her house, sex was never discussed. Her family never spoke about things like going through puberty, what it meant to be a woman and sex.
In her church, there was a lot of shame and fear around sex. Sex and being a sexual person were negatively portrayed.
Furthermore, in middle school, the form of sex education she received was fear-based. It focused on scaring students to abstain from sex by showing graphic images of genitals with STI’s. This was traumatic for Carrie.
Understandably, coming from this background, Carrie did not know much about her vulva and vagina, sex, and sexual function. Thus, when she got married in 2005, she had no idea what to expect in terms of sex.
Transitioning into Married Life and Pain with Sex
Carrie got married in 2005, and, of course, knew little about sex. She had to suddenly be OK being naked in front of another person and being intimate with them. That in itself was an overwhelming experience.
During the early period of her marriage, Carrie experienced some pain with sex. However, the pain got worse towards the end of her marriage. Importantly, Carrie never tore during sex, just experienced pain.
Understandably, this negatively impacted her relationship with her husband. At the beginning of their marriage, he was patient and seemed understanding. For instance, when she would ask how he felt about it, he would act as if it didn't bother him. However, towards the end of their relationship, it became clear that it affected him, at least to some degree.
Pain, Sex and Doctors Visits
Unsurprisingly, Carrie initially thought painful sex was a psychological issue. She reasoned that she went for her yearly well-woman check ups, and never once did a doctor mention something looking off.
Naturally, if everything was OK physically, then it had to be mental, right?
When she did mention the pain to a doctor, they actually responded with, “welcome to being a woman”!
Can you believe that?!
With this in mind, of course, Carrie, like many of us Lichen Sclerosus warriors out there, started to believe the pain was in her head. She blamed her pain on her sorted past with sexual messages. For example, the images she was shown at school and the shame around sex in the church. Carrie thought it was because she was too sexually frigid and anxious. Of course, none of this was true, nor was any of this her fault.
No One to Turn To
During this time in her life, Carrie had no one to confide in. She felt so much shame surrounding sex, she couldn’t bring herself to open up to others about it. Sex was never something that was discussed in her house, so she didn’t feel comfortable discussing this with her family. Further, this shame was so heavy that she didn’t even feel fully secure talking to her doctor about painful sex either.
In any case, Carrie felt this was her problem and hers alone to deal with.
The End of Her Marriage
In 2015, Carrie’s husband said he wanted a divorce.
Around this time, Carrie decided she needed to see a doctor. She was suffering deeply and needed answers. After her husband asked for a divorce, she stood firm in her resolve to get this sorted out. And, importantly, this sorting out was for no one other than herself. She knew she had no intention of starting a new relationship and she wasn’t going to be having sex. Carrie needed to do this for herself. She wanted to feel empowered by her body and have some answers.
The First of Many Visits to the Doctor
Shortly after Carrie resolved to see a doctor and advocate for herself, she was seen at a gynecologist’s office. The nurse practitioner sent her for a vaginal ultrasound and referred her to a pelvic floor physiotherapist in hopes of this helping with the pain during sex.
Pelvic Physiotherapy: An Attempt to Help With Pain During Sex
During the pelvic physiotherapy appointment, the physiotherapist did a manual exam and assessment of her vagina and determined that most of the pain seemed localized to one side. The physiotherapist was confident that with some yoga poses and dilator exercises, they could resolve Carrie’s pain.
In between visits with the physiotherapist, Carrie would work with the dilators – which vary from smaller to larger sizes – at home. She managed to work up to a certain size without experiencing much pain. However, when she tried the next size up, she experienced severe burning. When she reported this to the physiotherapist, they claimed this wasn’t normal and they wanted to refer her back to the gynecologist.
One positive from Carrie’s experience with physiotherapy is it normalized having other people look at her vulva/vagina. Through this exposure, she learned that the vagina is just another part of the body that sometimes needs attention, and there is nothing shameful about this.
She noted: “I should be able to say the word vagina like I say the word hamburger”.
Thus, through physiotherapy, Carried managed to normalize this part of the body and shed some of the shame she felt towards it.
Back to the Drawing Board
Frustrated with being tossed back and forth, Carrie made it clear to the gynecologist that she was upset at having to suffer with no answers. Her doctor listened and then examined her. He touched various parts of her vulva with a Q-tip, asking if she felt any pain. The entire process was so excruciating, Carrie stated if she hadn’t heard him ask the nurse for a Q-Tip, she would have assumed he was touching her with a thumbtack.
After the exam, the doctor admitted that something was clearly wrong, but unfortunately, this knowledge was outside his area of expertise.
Always a headstrong and determined woman, Carrie researched vulvar specialists in Tennessee and wound up at the Center for Pelvic Health with Dr. Jarnagin.
An Unexpected Surprise
Dr. Jarnagin was incredibly kind, compassionate, and gentle. He asked her a ton of questions, and was incredibly gentle in his examination. He performed a skin biopsy and told her he would see her again with the results. Shortly after this, she was diagnosed with Lichen Sclerosus.
Her experience with the doctor this time was incredibly pivotal and healing for Carrie. This experience was therapeutic in that it showed her she could have a male doctor examine her, and that she could be safe and have the experience be gentle.
He explained Lichen Sclerosus briefly to Carrie and said they would try to treat it with steroids. The doctor was careful to note if she didn’t respond to this treatment, there were other kinds of steroids available. Even laser treatments were an option! Carrie felt reassured and calm in the knowledge that she had a plan for how to treat, and there were many options if the first plan failed to work. Knowing this helped Carrie not to spiral.
Click here to read more about the importance of having a plan when dealing with fear and anxiety here.
He prescribed Carrie Clobetasol, which she used 2x daily for the first month, and 1x daily for the second month. After the second month, she went back for a follow-up where he said she looked great and to use the steroids only on a per-need basis. Carrie has since stopped her steroid treatment as she no longer feels pain.
A Caveat
*A general disclaimer to my readers: I am not here to tell you how to treat. I’m only relaying what I have learned from the medical literature and through my discussions with Lichen Sclerosus experts. It is ultimately up to you to decide how you treat, whether that is steroids or no steroids.
However, if you opt for no steroids, please consider getting seen regularly by your gynecologist or dermatologist, as Lichen Sclerosus often comes back silently. To read more about steroids from Dr. Krapf, click here.
Finding Love (and Sex) Again
Importantly, up until she met her now-husband, advocating for herself at the doctor’s office, pelvic physiotherapy, treating her Lichen Sclerosus, etc., was to empower herself and take back her life. During this time, Carrie had also been seeing a Christian psychologist for help to work through the shame she felt surrounding sex and her journey with Lichen Sclerosus.
When she realized she was getting serious with her now-husband, Steve, she decided she needed to tell him about her LS. Once they were married, they would have sex, and she wanted him to know what that could entail.
Steve was incredibly compassionate and understanding. He comforted her, noting he was grateful she shared this with him, and they would take things one step at a time. For example, if she felt pain, she would tell him, and they would stop and try again another time. He also noted that intimacy is more than just vaginal penetration.
Pain-Free Sex
After their marriage at the end of 2020, they had sex and Carrie did not experience any pain. She had bought a numbing Lidocaine cream and used this in the beginning, as she was nervous about there being pain. In time, however, Carrie ditched the cream and now has pain-free sex.
Let's congratulate these amazing newlyweds!
Conclusion
In sum, Carrie moved through an incredible journey of being a reserved Christian woman who knew little about sex and her vagina and who was having painful sex, to a woman who advocated for herself, reclaimed her body, empowered herself with knowledge, and found love in her relationship with Steve. She no longer experiences any pain during sex.
Now Carrie helps empower others to overcome fear and shame by working as a counselor for anxiety and OCD. She also hosts a podcast called Hope For Anxiety and OCD podcast, which is all about decreasing shame, increasing hope, and developing a healthy relationship with God and others. Her podcast is available on all podcasting platforms.
If you want to reach out to Carrie for counseling, you can fill out the contact form here Hopeforanxietyandocd.com.
You can also reach her on Instagram @hopeforanxietyandocdpodcast and @hopeforanxietyandocd on Facebook.
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Can you relate to Carrie’s story? Did anything, in particular, resonate with you? Let me know! DM me on IG @lichensclerosuspodcast, or FB @lichenscleorussupportnetwork.
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Resources:
https://centerforpelvichealth.org/specialist/
