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Lichen Sclerosus Diagnosis Stories: You Are Not Alone

Lichen Sclerosus Diagnosis Stories: You Are Not Alone

This week I’m honored to share diagnosis stories from brave lichen Sclerosus warriors. These ladies are all over the world and from all walks of life. Each one has gone through an individual experience but one that is all too familiar.

Lyna's Lichen Sclerosus Diagnosis Story

I'm almost 27. I was diagnosed about 2 years ago but have had LS for 5 years. Similar to your story, it took a long time to figure out what was happening. I was seeing my gyno and GP for 3 years, telling them about my symptoms of intense itching, burning, and fissures. Every time I'd come in the office though for a check-up, my fissures would be healed and nothing was visible. They started testing me for STDs, BV, yeast infection, etc but every time, it always came back clear. I was telling them how I haven't been sleeping because I was awake all night long scratching until I had blood under my fingernails. I was starting to fall asleep at work because the LS was keeping me up every night. They seriously told me I was making this up and that I probably just needed to be on anxiety medication. I gave the anxiety meds a shot… but I was still having symptoms and it was driving me insane that my two female docs were not helping me, instead calling me crazy!

I ended up doing some googling while sitting on the toilet one night. I know how dangerous that can be though so I try my hardest not to go to webmd because, well, every time it jumps to YOU HAVE 6 MONTHS LEFT TO LIVE!!! But I mean, if I'm getting bad news, at least I'm on the toilet right? Sorry if my sense of humor is too disgusting.

Well that's when I came across LS and it said to seek medical attention from a dermatologist. I was a bit skeptical but I kept reading and it was all like “a biopsy may need to be preformed” and I was like “uh yeah no” I'm not brave enough to have my vagina skin cut up. I'm going through enough pain as it is! But after another month of scratching like a maniac, I decided to set up an appt and I'm so glad I did! No biopsy was necessary thankfully. My derm actually listened to me, HE actually cared about what I had to say! Unlike those women, who I thought would be more understanding (so disappointed in them, truly.) He took a look, even at my asshole, which I wasn't expecting, and said it was clear I had LS. Honestly, I couldn't ever see anything except fissures once in a while. But he's a professional, so.

I know a lot of women deal with fusing, fissures, cracked skin, flaking skin, burning, itching, etc. I guess I'm one of the “lucky” few who have a more mild case. My treatment over the last 2 years has been just using Clobetasol ointment and CeraVe hydrating facial cleanser. Yes, you read that right, facial cleanser. My derm suggested it. It helps keep the skin smooth and moisturized so that there's less chance of the skin flaking.

Jaclyn's Lichen Sclerosus Diagnosis Story

 Lisa's Lichen Sclerosus Diagnosis Story

At age 34, after giving birth (vaginally) to my second child I started noticing something wasn’t right.  Several weeks after delivery I was certain I had a yeast infection.  I treated with the standard drugstore Canesten cream suppositories.  I did feel some relief, but then every few weeks (sometimes even days later) I would feel yet another “yeast infection” coming on.  I was red, burning, swollen, inflamed, and itchy/irritated.  I continued treating for yeast; trying different brands, different doses, etc.  Finally, after approximately 6 months, I’d had enough and decided to see my GP.  I should have gone sooner but I had a new baby and I was healing, nursing, and stressed, and I didn’t make it a priority.  This is a regret I’ll always have. 

My GP took one look and said, yes, it appears you have a yeast infection or some kind of vaginitis because you are extremely red, swollen and inflamed.  He gave me prescription for lactic acid vaginal suppositories (usually used to treat Bacterial Vaginitis) and told me to apply a “pin tip” amount of Betamethasone steroid ointment.  He literally said, “only apply what you would get at the end of a safety pin if you were to scoop it out with that” (obviously, I now know this is incorrect and much more ointment is required).  In addition, he had me take 3 fluconazole pills over 72 hours (for yeast).  After a week or so I did start to feel some relief.   However, this relief was short lived.  My symptoms returned weeks later.  In addition, I was dealing with issues around sex.  If I attempted sex, my 6:00 area (along my perineum, where I tore during childbirth) would tear and the pain was excruciating.  It honestly felt like a baby was crowning or like pouring lemon juice into a paper cut.  Sex was impossible.  I had to pour warm water over me while I peed until the tear healed for several days and even then more scar tissue formed in that area.  I was beyond devastated, ashamed and embarrassed.  I couldn’t fully enjoy my time with my new baby because I was so preoccupied with these issues.

Because there was nothing more my GP could do for me (he never once mentioned Lichen Sclerosus), I made an appointment with my obstetrician, hoping for more answers.  When I finally got an appointment with her (months later) she did a quick exam.  She immediately said, “This is not normal. You are very pale down there and your vulva is disfigured.  The architecture has completely shrunk.  I think you have Lichen Sclerosus and Vaginismus”.  At the time I didn’t really know what she meant so I just sort of nodded and asked what she recommended for treatment.  She also asked me if I bathed with scented soaps/bath balms and wore panty liners daily, which I don’t.  She wrote down the terms Lichen Sclerosus & Vaginismus on a piece of paper and told me to look them up online (!).  Looking back this makes me angry because she should have taken the time to explain LS.  She also wrote me a prescription for Clobetasol; told me to apply a water droplet amount every night for 2 months on the area that tore. (Now I know this was wrong and I should have applied CLOB to all areas of my vulva since the whole area was pale, disfigured, and had active disease).  She followed up by saying the damage is irreversible, but we will try to stop it where it is.  That’s it.  No follow up appointment, no discussion of sex, no discussion of mental health, no discussion of hormones or autoimmune issues.  Little did I know my life would change forever after this appointment and I’d spend the next 3 years researching, joining support groups, buying various ointments and barriers, getting second opinions, etc.  

Once home from that appointment I sat on my bathroom floor and, for the first time, took a really good at my vulva…with a mirror.  What I saw took my breath away.  I can only describe it like flesh eating disease; my vulvar architecture was completely gone.  It was like it disappeared.  My labia minora were gone, shrunk and resorbed into the majora.  My clitoral hood was also gone, and I had scarring covering my clitoris (clitoral phimosis).  The 6:00 area was totally white, scarred and torn.  I only wish I had looked a year sooner so I could have monitored changes and insisted I see a vulvar specialist.  

The 2 years that followed were a blur of anxiety, stress, and pain.  Dealing with LS is a full-time job and it completely changed who I am as a person.  My mood changed; I didn’t want to see anyone, didn’t feel joy in other areas of my life.  I probably spent 3 hours a day researching LS.  I joined a FB support group which helped immensely because many of the members know more than the doctors.  I learned that I should be applying CLOB to my entire vulva and not just where I was tearing.  I also learned to soak in warm water before applying steroids and to rub it into the skin for a full 60-90 seconds.  I got ideas about how to moisturize using Emu oil and other natural products.  I threw out all my pretty underwear and bought 100% cotton.  I pat dry instead of wipe.  I sleep with nothing on the bottom. 

But has this helped?  I’m honestly not sure because my LS continues to progress.  CLOB gives me horrible yeast infections which are very uncomfortable so I’m currently trying Protopic ointment to see if it makes a difference (so far, after 5 weeks, I haven’t noticed any difference).  I know CLOB or other, less potent steroid ointment help lots of people and I would definitely recommend them if they work for you.  However, in 4 years I haven’t noticed any improvement from the day I was diagnosed.  I have lost most of my labia majora now as there is hardly any fatty tissue left and I can’t move the same.  I can’t sit cross-legged; I can’t wear jeans, I can’t stretch my legs in certain positions and I have to be careful doing certain things like getting in and out of the car, because because there is no protection of my urethra or vestibule area and my skin tears so easily.

I’m convinced that hormones play a much larger role than doctors care to discuss, especially in pre-menopausal women, like me.  It’s much easier and quicker to say, “it’s autoimmune” and prescribe steroids.  If it’s strictly autoimmune then how come so many women get it during/after menopause when hormones are changing?  Why do lots of pre-menopausal women like myself get it after childbirth and when nursing (our estrogen levels are low) and why does pediatric LS often go into remission during puberty when estrogen levels increase?  No doctor has checked my hormones because I’m still getting my period and they say there is no reason to do so.  Almost every time I get my period my vulva get’s red, swollen, inflamed, burning, sore, etc.  Then it starts to go away a few days after my period.  Is this an LS flare?  No doctor can tell me.  One specialist thinks I could have Lichen Planus (LP) in addition to LS, but the treatment is still Clobetasol, so even if I have LP, steroids aren’t helping.  

Through all of this, I’ve tried so hard to be a good mother to my two daughters.  I try to be happy around them and smile, but inside I’m breaking.  My husband and I have a strained relationship and I have so much guilt.  I’ve isolated myself from my friends because I feel so broken and defeated (not to mention physically uncomfortable).  I feel “less than” and my self-esteem is not what is used to be.  My life has turned into a montage of sitz baths, applying all sorts of lotions and potions, checking myself in the mirror daily, and trying to smile through the pain. 

After years of suffering, I’m just starting to truly accept this as my new normal and know that I will have bad days and better days.  It is not lost on me that people everywhere are suffering from ‘invisible’ diseases and this is just one of many.  I hope that further research is done in this area because it seems to get lost between dermatology and gynecology and the doctors I’ve seen tend to refer patients back and forth with no real answers.  I’m so glad that Kathy was brave enough to start this podcast and that women are willing to share their stories and discuss this sensitive topic.

Marie's LS Diagnosis Story

Just a little bit about me: I'm 37 and was diagnosed with LS in January 2020. I started getting symptoms in March 2019 after taking an antibiotic and thought it was a yeast infection. My PCP and gyn just thought I was in a bad itch/scratch cycle after a yeast infection, but eventually, my doctor ordered a biopsy. She thought she was ruling out LS because I didn't always have consistent symptoms, but it turns out that was what I had. Looking back, I think there were instances earlier in my life when I had symptoms, but they were quickly treated with an ointment and I didn't think anything of it.

My symptoms are strongly associated with my menstrual cycle. It's like clockwork — some months I'm able to get a good week in between my period and ovulation, but as soon as ovulation hits I flare-up. I've been trying seed cycling for a couple of months after a wellness practitioner suggested that it may help regulate hormones. Last month I was able to have a longer stretch of lighter symptoms, but it hasn't been long enough to see if it'll really help. They say it can take months of seed cycling to see if it even works, but I've got my fingers crossed.

For the most part, I'm hanging in there, but some days are really rough. It just impacts so many areas of your life and no one talks about it. I also have chronic back pain, so between the two issues sometimes I really just miss feeling like myself.

Conclusion

Did any of these stories resonate with you? Do you have similar experiences? What's your Lichen Sclerosus diagnosis story? I would love to hear more stories and continue doing episodes like this. So, let me know, share with me.

You @lichensclerosuspodcast@lichensclerosuspodcast. Message me on Facebook @lichensclerosussupportnetwork or email me at kathy@lssupport.net.

I hope you feel less alone. And you know, there are thousands of women out there who feel just like you.

And I hope you sign up for the virtual meetups so you can meet a couple of them face-to-face.

Lichen Sclerosus Podcast Virtual Meetup

I hope you have an amazing week. And I will talk to you next time. Bye.

By Kathy

I'm 42, a wife and mother of three. I have been suffering from Lichen Sclerosus since 2013. I started this podcast to build community and learn more about this incurable condition.

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