Hi Clare,

I also have lichen sclerosus, I was diagnosed when I was 27, now 33. I was misdiagnosed for 4 years by which time it was quite severe. Since 2019 I've had one area that has been an issue, a biopsy showed vin 1/2, but no treatment was done as I was pregnant at the time and the three gynaecologists I saw said the vin had cleared. I then saw my dermatologist this March, who decided to biopsy two areas. That was 5 weeks ago, I hadn't heard anything until I got a letter at the weekend stating I'm being referred to gynae oncology under the 2 week pathway. Needless to say, I'm petrified. I contacted the hospital this morning but just been told to wait for a call. I can't help but feel it's not going to be good news. Thanks for reading, Jo.

Hi Clare,

I also have lichen sclerosus, I was diagnosed when I was 27, now 33. I was misdiagnosed for 4 years by which time it was quite severe. Since 2019 I've had one area that has been an issue, a biopsy showed vin 1/2, but no treatment was done as I was pregnant at the time and the three gynaecologists I saw said the vin had cleared. I then saw my dermatologist this March, who decided to biopsy two areas. That was 5 weeks ago, I hadn't heard anything until I got a letter at the weekend stating I'm being referred to gynae oncology under the 2 week pathway. Needless to say, I'm petrified. I contacted the hospital this morning but just been told to wait for a call. I can't help but feel it's not going to be good news. Thanks for reading, Jo.

Hi Jo

It's a worrying time and you will think the worse.

could be your VIN 1/2 is now VIN 3 so you need treatment which could be surgery or Aldara cream.

Hopefully you won't have to wait much longer. 
 

Clare 

Thanks for your reply Clare. That's what I'm hoping it is. I've kind of prepared myself mentally for a WLE as it was discussed before, so hopefully that will be the only treatment needed.

Jo