u/ConstantHabit3880

Speaking from my own experience as someone who was not diagnosed via biopsy.

After having my baby, I started experiencing symptoms of pain with sex that increased to being unbearable over about 18 months. Upon examination, my entire vulva was white, my labia had shrunk and I had fusion. I never had white patches, I never had itching. I was diagnosed with LS simply based on my saying that my vulva was white. I remember the Dr saying "oh you have lichen sclerosus!" before she even took a look at me, just from hearing that it was white. She took a brief look and said yep, it's LS, and that was it. I never had a biopsy.

I am having increasing issues that I think may be because I was misdiagnosed. My skin is getting worse now after years of steroid use. For the first couple of years, I was still able to shave, as an example, but now I can't as I break out in swollen red painful lumps when I try. I never had fissures, but now with proper steroid use, I have repeated painful fissures that open and bleed regularly. I also now have chronic yeast infections of the skin that I take medication for weekly. All of this together is making me think that over time, I am getting secondary issues from using clobetasol, as perhaps I never had LS in the first place. From what I've read, improper use can cause skin thinning, secondary infections, and increased sensitivity and irriation, all of which I'm getting from following Drs orders on using my steroid.

So I was doing some reading and came across this: Genitourinary Syndrome of Lactation (GSL) is a relatively new term coined to describe issues that many women experience (on a spectrum of severity) due to hormonal changes associated with breastfeeding. The paper describing this only came out in 2024 (https://pubmed.ncbi.nlm.nih.gov/38757214/). My son was a voracious breastfeeder - I did not get my menstrual cycle back for 2.5 years after having him, so safe to say my hormones were affected.

The symptoms sound an awful lot like LS and there is substantial overlap:

• Symptoms: Both GSL and LS can present with intense vulvar itching, burning, pain, dyspareunia (painful intercourse), and vaginal tearing. Both can lead to, or appear as, atrophy (thinning) of the skin and tissue.
• Thinning and Pallor: Due to reduced estrogen, the skin of the vulva and vagina loses collagen, elasticity, and blood flow, which can lead to a paler, thinner, or sometimes "white" appearance (pallor).
• Dryness and Fragility: The skin becomes drier, more fragile, and more easily traumatized, which can make it appear lighter or cause small, bright red dots (petechiae).

Further, use of steroids can mask the symptoms of GSL/GSM, so we can feel like the treatment is working, when it is probably actually causing more damage if we don't actually have LS. My various issues only seem to be getting worse over time despite my Drs saying my LS looks like it’s under control as they can’t see any active disease.

This is just a theory, I may very well be wrong, but it’s one I’m going to try to investigate for myself and discuss with my Dr. I'm going to taper down and stop my steroid (with my Dr) and get a biopsy done to figure it out. I'm also going to ask for DHEA to see if that helps my symptoms.

There is an article on the overlap of GSM and LS here, saying that some people are indeed misdiagnosed and it's worth asking these questions if you're not sure: https://lssupportnetwork.org/lichen-sclerosus-menopause-whats-the-difference/

I am aware of women on here who have had onset of symptoms after having a baby and with breastfeeding. I'd be interested to hear from anyone who was diagnosed without biopsy that may be questioning their diagnosis or having ongoing issues like I am. Is anyone else in the same boat?

I'm posting this with a genuine desire to help others and share information :)