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The Pain That Had No Name: My Experience with Lichen Sclerosus & Acquiring the Language & Tools Necessary to Advocate for Myself

The biopsy was quick, although uncomfortable, and confirmed that I did indeed have lichen sclerosus, a skin condition that affects the vulva and appears as white patches, tearing, itchiness, redness, bleeding or blistering. 
What are symptoms of lichen sclerosus and how can I treat LS at home?


words by Celina Gomes (she/her)
@sexedcelina

 

I grew up loving my pediatrician and everyone in the office, except for the doctor that told me my vagina was having a bad memory when I came in with unexplainable vulva pain and irritation. She asked me about my sexual history, and I told her I’d had penetrative intercourse with one guy. She wanted to know if we were still together. I cried and told her we never were, and things didn’t end well. 


She didn’t ask any other questions or do any further examination — just took a peek “down there” and with a straight face told me my vagina was having a bad memory because of this bad relationship and there was nothing she could do.  


I had just turned 20 years old, and while I knew it was time to move on to an adult doctor, this experience with her confirmed it. Days later, I ended up in the ER with a yeast infection so bad it attacked the nerves from my pelvis to my calves. They immediately hooked me up to intravenous antibiotics and told me I had one of the worst yeast infections they’d ever seen.  Turns out I was having more than a “bad memory.”  

When my vulva is irritated, there’s a domino effect of symptoms and infection. If I get a yeast infection, a UTI is coming next. If I have a UTI, I can almost always count on a yeast infection to follow. It’s been this way for such a long time, and it has nothing to do with my vagina having a bad memory (although I now have plenty). I’m caught in a cruel feedback loop, taking antibiotics for the UTI that triggers the yeast infections. The yeast infections trigger UTI’s. The UTIs require antibiotics for care, and the cycle continues, never fully treating the root cause. 


This past year alone, a yeast infection got so bad it turned into pelvic inflammatory disease (PID), which included a very painful UTI and the yeast infection continued for weeks afterwards. It isn’t just a nuisance; it’s life altering. 


As uncomfortable as these conditions are, I’m comfortable talking about them because they’re considered “normal.” There are yeast infection treatment commercials on TV, over the counter UTI relief available at the drugstore, and of course many shared stories amongst friends about drinking cranberry juice and peeing after sex. Still, there’s plenty about my vulva I haven’t talked about, and a particular skin condition I’ve had that I never bring up in conversation because it feels too rare and difficult to even describe. 

 

... 

 


Back in my late teens and early 20s, I began getting lesions between my inner and outer labias and at the top of my vulva, just above my clitoris. These abrasions were incredibly painful and sensitive. They itched and burned. Urinating would cause them to sting. I often felt helpless. What could I do to heal these open wounds? What was causing them? 


I knew these cuts couldn't be explained away with my vulva having a bad memory. I knew there was no stock in the stigmatizing myths that masturbation makes your palms hairy or cause you to go blind. But I wondered if all my DIY orgasms had somehow sensitized my skin and made it vulnerable to these sores. I honestly started feeling like my body just hated me.


And here’s the thing: I never talked about it with my peers. What was I supposed to say? “Hey do you ever get cuts down there that come out of nowhere?” I guess I could have, but I’d always imagine their follow up thoughts would conclude that I was dirty or weird or that I’d been masturbating too much. It wasn’t like I could just show them my vulva and say, “Hey take a look at this — have you ever had this?” as if it was just a scrape on my knee or pimple on my back. 


Even though my group of friends is pretty open and progressive, we don’t talk about our vulvas as much as the media implies penis owners casually talk, joke, or brag about their genitals. As people with vaginas, we’re conditioned to keep our legs closed, even with one another, even when there’s medical concern. 


To really see the diversity of our vulvas, we’d have to spread our legs and maybe use our fingers to open the lips. They’re just not as visible as penises and testicles are in a locker room. So, unless we’re intimate with other people with vulvas, we just don’t really see them. And what we don’t see, we don’t talk about


What I mean is that growing up, I knew that penises came in all different shapes, sizes, and colors, but I never realized that vulvas do, too. The fact is, as a cisgendered woman who had only hooked up with cis men at the time, I’d seen way more penises than I did vulvas.  I was less aware of what was the “same, but different” about my vulva and my friends’ vulvas than I was about the similarities and differences in the penises I’d seen.  


Back then, I could probably point out a concern like a bump or skin condition to a man more easily than I could identify an issue between my own legs. Because we just didn’t talk about our parts, or see one another’s, unless it was perfectly manicured and edited in some hetero male porn fantasy. On top of that, we’re taught by society we shouldn’t self-touch, and that bred a lot of shame around exploring or even learning about our own bodies


Despite being the most outspoken and vocal amongst my friends, I was at a loss for words to describe the pain I was experiencing. I never felt comfortable discussing my troubled skin — the “cuts on my lips” —  even with my trusted friends, so I just suffered in silence. Sure, I’d joke, “my vagina hates me,” or tell them “you know I have stuff going on down there,” when I was obviously in physical pain, but always left it at that, the mental anguish hurting just as much. 

 



Thank goodness I could always talk to my mom.  She was comforting and compassionate, and made sure I went to the doctor.


During a flare up, I finally made an appointment with my doctor, who suggested we do a biopsy because she was pretty sure I had lichen sclerosus. The biopsy was quick, although uncomfortable, and confirmed that I did indeed have lichen sclerosus, a skin condition that affects the vulva and appears as white patches, tearing, itchiness, redness, bleeding or blistering.  


This was the first time I had language to explain my pain beyond “cuts on my lips.” Once I had the words to describe my condition, I felt more validated in my pain. I knew I wasn’t imagining it, making it up, or causing it, and this diagnosis confirmed it.

 

 


Once I had the words to describe my condition, I felt more validated in my pain. I knew I wasn’t imagining it, making it up, or causing it, and this diagnosis confirmed it.

 

 

The doctor prescribed a steroid cream to apply and told me to “keep the area dry.” That meant drying well after showers, and changing out of bathing suits and workout clothes as soon as I got out of the pool or gym. She suggested I keep my pubic hair trimmed to decrease moisture, and told me I could use petroleum jelly* to create a soothing barrier.  


*DISCLAIMER: We do not recommend using petroleum jelly internally or externally, since residue can remain for an extended period of time, and potentially increase your risk of infection. You should never use vaseline or petroleum jelly as a lubricant, and always consult a trusted health professional before introducing new products to your skin.


When my skin was broken and raw, simple movements like walking and urinating would have me holding back tears. During a flare up, I definitely didn't feel comfortable enough to have partnered or even solo sex. Many people with lichen sclerosus endure long periods without sex because of the pain, sensitivity, and changes to the structure of their vulva. 


To help manage my condition, I followed the doctor's orders and continued using the steroid cream for years. With any sign of itchiness or skin splitting, I'd apply the cream, and tried to give my vulva "room to breathe." I slept without underwear and wore loose fitting pants and dresses during the day. I kept my pubic hair trimmed short to be sure the area stayed dry. I stopped using any soap with fragrance, and made sure all my period products were also fragrance free. 


I am thankful that by my late 20s, the flare ups had decreased, and by the time I entered a more sexually active period of my life, my lichen sclerosus wasn't as active.


I haven’t had a flare up or used the steroid cream in years. I know I am a person with lichen sclerosus and that it can appear at any time again, but the longer I go without a flare up, the more at ease I feel. For the past couple of years, I’ve used the Momotaro Apotheca Salve to provide relief and ease the first sign of a possible flare up. As soon as I notice a slight itch, I apply a dime size amount to my vulva. I’ll also apply it right after I shower, and before I work out to protect my skin’s moisture barrier from irritation from tight fabric or repetitive movements. 


I only wish I had advocated for myself earlier so that I could have the language and resources available to me to understand what I was dealing with before I was first diagnosed. Actually, I haven’t had a doctor follow-up or ask me about lichen sclerosus in a long time, even though it’s on my chart. I have to continue to advocate for myself — we all do.  


It’s been nearly a decade since my diagnosis, and I’m still learning. Until stumbling upon a lichen sclerosus support group a few months ago, I didn't know that in addition to common symptoms like a chronically itchy and irritated, crinkled and crepey vulvar area, lichen sclerosus can also cause scarring and the area affected can join up with nearby skin, changing the structure and appearance of your vulva — shrinking of the labia, clitoral hood fusing, and even a narrowing of the vaginal opening. 


When I found out, I kind of freaked out and felt like I couldn’t breathe. I took a mirror out immediately, opened my legs and looked at myself. My inner lips have always been small, but I started to wonder if they’d gotten smaller because of the lichen sclerosus. It makes me sad every time I think about it because I’m just not sure. I don’t have a long-term partner to ask if they’ve noticed any change.

 

 

LEARN MORE Below the Folds: Learn the Anatomy of Your Vulva & Vagina

 

 

It bothers me that my labia minora now seems almost non-existent to me. For me, the saddest part is that I didn’t know my own vulva well enough to know if and when my inner lips changed.  I have a strong intuition that my labia minora has shrunk, and I suspect lichen sclerosus played a part in that. The only way I am aware that this can happen is because other people with vulvas are talking about it. We have to talk about the things we have been told not to talk about.  


With or without flare ups, I still feel the pain knowing that just talking about our sexual and genital health is all too uncommon in our conversations. As an adolescent and young adult, I wish I was having these conversations about my vulva, what it looks like, and how it functions so I could have better knowledge and maybe a little more of a clue when something was wrong.  


Aside from lichen sclerosus, I’ve had bumps, pimples, ingrown hairs, chronic yeast infections, recurring UTI’s, labia pain, pelvic floor dysfunction, cysts, adhesions, and heavy, painful periods.  

Sometimes we think everything is “okay” and suffer in silence with irritation or pain because we don’t know if what we’re dealing with is an actual medical condition. I used to think “oh maybe everyone has this or feels this way, but we just don’t talk about it,” in regard to so many of my conditions.  


I am passionate about my work as a sex educator now because I want to encourage shame free conversations between friends, parents and children, and patients and medical providers. Our vaginas are not just having bad memories. They may be having a hard time though, and we can and should talk about it.


Common Symptoms of Lichen Sclerosus

  • Chronic vulvar and/or anal itching, fissures, bleeding, and pain (which may go away and come back later)
  • Thin skin that appears pale, thicker or crinkled
  • Split or cracked skin, known as fissuring
  • narrowing of the vaginal opening or clitoral fusion due to scarring 
  • Pain doing everyday activities like sitting, walking, or urinating
  • Painful sexual intercourse (dyspareunia)
  • Difficulty sleeping due to chronic pain and itching


How To Manage Lichen Sclerosus Outbreaks 

Use natural and organic products on your vulva and in your vagina whenever possible. If you can’t find or afford them, it’s best to forgo these items and let your body heal itself. 

Wear breathable cotton panties. It’s not necessary to completely forgo lacy lingerie or spandex, but a thong a day will not keep a yeast infection away.  

Loose fitting clothing is your friend. Again, not necessary to wear culottes or a skirt everyday, but it’s best to let your vulva breath whenever possible to avoid future or further irritation. 

Take off gym clothes and swimsuits as soon as possible! The excess moisture is a breeding ground for bad bacteria. 

Trim your pubic hair.  No need to go full Brazilian! Your body hair helps protect your sensitive areas, but bacteria can get trapped and multiply if you don't properly dry your pubic area. It's also easier to see and track changes in your vulva. 

Pee after masturbation or partnered sex in any capacity. This helps to literally “flush” bacteria out to help prevent UTIs and other vulvar infections (and irritation). 

Sleep naked. Or just forgo bottoms or underwear to let your vulva breathe. 

 

 

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Meet the Author

Lichen Scleroses

Celina Gomes (she/her) is a sex educator and mom with a background in early childhood education.  After she closed the doors of her daycare business due to COVID-19, she explored her other passions and became a certified sex educator. Celina has been answering her children’s questions about sex and bodies with accurate, inclusive, and shame-free language since they were toddlers, and is now helping other parents do the same.  She's been her friends' go-to gal to talk about sexuality and toys, and is now offering that safe conversation space to everyone. Celina believes that access to pleasure and sex information is key to living in healthier, happier bodies, and creating a kinder, more just world. Follow her at @sexedcelina and learn more at www.celinagomes.com. 




Related Reading 

Chronic Pelvic Pain: Conditions, Symptoms and Resources

Decode Your Vaginal Discharge

3 Must Reads on Bacterial Vaginosis

What You Need to Know About Yeast Infections

The Intersection of Sexual and Mental Health

Vagina is Not A Dirty Word 

The Etymology of the Colloquial Use of Vagina 

 

 

Momotaro Apotheca and its materials are not intended to treat, diagnose, cure or prevent any disease. 
All material on Momotaro Apotheca is provided for educational purposes only. Always seek the advice of your physician or another qualified healthcare provider for any questions you have regarding a medical condition.


 

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