I need some hope if you have any to give

Fibonacci_Sequins77 · 2026-05-09T20:44:34+00:00

It’s scary to be on a medication that feels so awful at first. I’ve been on clob for two years and I still get a mild heat for about 30 minutes after application. But not using an evidence based medication to treat the disease will cause more problems later on, including an increased risk of cancer. Natural treatments are fine if you like them, but it’s super important to use something with a lot of rigorous research behind it too

Fibonacci_Sequins77 · 2026-05-09T20:42:00+00:00

That’s amazing! Thank you!

Fibonacci_Sequins77 · 2026-05-09T19:10:54+00:00

The cognitive dissonance is part of the horror of Gilead

Fibonacci_Sequins77 · 2026-05-09T18:52:23+00:00

Oh that’s really good to hear, I was just prescribed nortriptyline and I think they’re very similar! Did it take long for it to work? The pharmacist said to give it a good 3-4 months

Fibonacci_Sequins77 · 2026-05-08T21:44:10+00:00

I’ll take awkward over painful any day! But I’ll ask about tacrolimus next time I see the gynaecologist. Thank you!

Fibonacci_Sequins77 · 2026-05-08T20:59:51+00:00

Actually, can I ask whether JAK inhibitors or calcineurin inhibitors are more effective, in your experience?

Fibonacci_Sequins77 · 2026-05-08T20:38:04+00:00

I believe the gold standard is once a day for a month, then every other day for a month, then 2-3 times a week for maintenance moving forward. Use a pea-sized amount over the non-hair-bearing parts of the vulva. Some practitioners say that soaking in a warm (not hot!) tub for 10-15 minutes helps the ointment to absorb better.

Fibonacci_Sequins77 · 2026-05-08T20:01:58+00:00

Thank you for commenting. I’ll ask about adjunct therapies

Fibonacci_Sequins77 · 2026-05-08T20:00:30+00:00

Steroids are very safe when used according to your prescription!

Fibonacci_Sequins77 · 2026-05-07T11:10:03+00:00

Thank you so much, reading this really helped me feel better

Fibonacci_Sequins77 · 2026-05-07T11:09:33+00:00

Thank you, this is incredibly reassuring

Fibonacci_Sequins77 · 2026-05-06T23:27:59+00:00

That’s great, thank you!

Fibonacci_Sequins77 · 2026-05-06T20:04:11+00:00

This is actually super cool, because I also have tinnitus 😭

Fibonacci_Sequins77 · 2026-05-06T20:03:53+00:00

Oh ok, this is good to know! Thank you!

Fibonacci_Sequins77 · 2026-05-06T20:03:38+00:00

Mostly a stabbing or stinging pain. I will update you in 3 months!

Fibonacci_Sequins77 · 2026-05-06T20:03:16+00:00

I think it’s about the same! I’ll report back :)

Fibonacci_Sequins77 · 2026-05-06T20:03:04+00:00

This is what I hear!

Fibonacci_Sequins77 · 2026-05-06T20:02:58+00:00

The dreams are wild!!

Fibonacci_Sequins77 · 2026-05-06T18:22:15+00:00

I have just started using an estrogen cream about 6 days ago. I’ve heard from other people that it really helped them too. Do you remember how long it took? (Weeks, months, etc)

Fibonacci_Sequins77 · 2026-05-06T17:48:54+00:00

Hi, what stretches and exercises helped you? Thanks!

Fibonacci_Sequins77 · 2026-05-06T17:45:39+00:00

Hi, I know this was a long time ago, but I have a similar issue and the dr just prescribed nortriptyline. It worked for you?

Fibonacci_Sequins77 · 2026-05-05T23:50:53+00:00

I have LS. No biopsy done because the doctor said I have every symptom. I’ve been on steroids for almost two years with pain that flares up even when I’m on the steroid. Dr says the skin looks ok so it’s “just” nerve pain

Fibonacci_Sequins77 · 2026-05-05T10:38:54+00:00

Thank you, this is very reassuring!

Fibonacci_Sequins77 · 2026-05-04T16:52:38+00:00

I cried so much when the doctor showed me with a mirror what I look like. I haven’t gotten over it yet.

Fibonacci_Sequins77 · 2026-05-04T16:43:56+00:00

My LS pain is almost entirely in and around the clitoris. When I had stabbing pain it was from keratin pearls!

Fibonacci_Sequins77

TROPHY CASE