My gyn changed diagnosis three times
I have one question for those of you with LS: What exactly do “white patches” look like? Are they always truly white?
I have what I would describe as a narrow “ribbon” on each side, just outside the labia minora where the pubic hair begins. They’re almost invisible and are more beige, caramel, brownish/ yellowish, not white at all. Those areas were what my gynecologist based the LS diagnosis on.
I had been dealing with burning, itching, urethral spasms, painful intercurse for over a year. I changed doctors a few times. Got pelvic floor therapy. I was diagnosed in March with LS, vulvodynia, and eczema, but only after I finally found what I thought was the “right” gynecologist. I have no fusion and no obvious white patches.
I started clobetasol immediately and got some relief. But my symptoms never disappeared completely. I was also using lots of Linola (a fatty moisturizer).
At my next follow-up, everything changed. My gynecologist suddenly said, “Wait, maybe it isn’t LS after all.” She told me to stop the clobetasol and switch to Protopic for eczema, and she prescribed estrogen cream because she thought vaginal dryness might be causing the burning and spasms.
Then the heatwave hit. I have never experienced itching like that before, it became almost unbearable.
Thankfully, my second follow-up was close. But that appointment left me even more confused. She examined me and said, “Well… maybe it is LS after all. Why aren’t you using clobetasol anymore? Who prescribed the estrogen? That’s not useful.” (And I was like…uhh you?) She then told me to restart the clobetasol regimen, prescribed yet another cream (this time one containing urea for the itching), and advised me to continue applying plenty of Linola.
I’m so frustrated. It feels like every appointment completely changes both the diagnosis and the treatment plan. I don’t know what to believe anymore. The burning and the urethral spasms disappeared nearly completely. But the itching became worse.
She doesn’t want to perform a biopsy because she says they’re often inconclusive. She works within an LS network and has LS brochures all over her office, so I wonder whether she might be seeing LS everywhere. At this point, I’m definitely planning to get a second opinion.
Has anyone else been diagnosed with LS without obvious white patches? Or had a diagnosis that kept changing like this?