u/Fibonacci_Sequins77

I had the most frustrating dr’s appt ever a few days ago. This is the dr who diagnosed me two years ago and then I couldn’t get back in to see her. I’ve had a very hard time getting to remission, but she was so dismissive of all my concerns. Just didn’t seem to care at all. Plus she told me there’s no way phimosis was causing any of my problems because I didn’t have “enough” phimosis, when literally every paper I’ve read on the subject says that the degree of phimosis doesn’t correlate with the severity of symptoms.

Has anyone else had a bad doctor experience?

I have vulvar lichen sclerosus and have been on daily or twice daily ultrapotent steroids (first clobetasol and now halobetasol) for two years. I’m not able to taper down past once a day, and I still get flares.

Does it make sense to switch to another class of medications?

My doctor prescribed this today. The pharmacist said that it will show some effect in the first 4-8 weeks but that it will take 3-4 months for full effect.

Has anyone used this and found it helpful? I’m pretty scared it won’t help

If so, did your pain get worse for a while?

I’ve been on 10mg amitriptyline for six weeks and I’m switching over to notriptyline because of the side effects. Will I need to start all over? I know it can take up to 4 months to start working.

I’m in so much pain today. The dr said she didn’t see much sign of active disease and so she thinks it must be nerve pain. She said she doesn’t think phimosis alone can cause pain.

I can’t live like this forever. I’m on daily steroid for so long, can’t taper. I’m so sad.

Has anyone had a burning pain from phimosis?

I have to stay in a couple of hotel rooms over the next few weeks and I’m so freaked out by bedbugs.

So far, I’m planning to:

-leave most of my belongings in the car (staying just one night at each place) and bringing just a backpack which I’m going to leave in the tub
- check the bed and couch for signs of bugs

Anything else I should do? Places I should check?

hi there

I have LS and bad adhesions in my clitoris hood. About two days ago I realized there were keratin pearls and tried to gently get them out. I felt a very sharp pain as I was pulling upward and I’m pretty sure I tore one of the adhesions :((( it’s a little better today but it still stings if I sit the wrong way or walk too fast. Doesnt feel burning like LS pain, just a stinging feeling. Did this happen to you? How long did it take to feel better?

I have lichen sclerosus and so when I started having sharp pain on the right side of my clitoris this week I assumed it was a flare. I took a look with a mirror to see if there were any tears. I have moderate to severe phimosis so I can’t usually see inside the hood, but this time I very gently pulled upwards to look for tears and instead saw two white balls right where all the pain is.

I already use steroids daily for the LS, but I saw a couple studies that used estrogen to treat pearls. I’d love to hear from some people for whom this worked! 🙏🙏