Lichen Sclerosus: Any other women dealing with this disease?

It was under general anesthesia, and it went well, insofar as it has been healing - now at 5 weeks.

I had the entire vulvar area addressed with the laser ablation. The first 3 weeks of excruciating pain at bathroom visits seems to be over, but it has been replaced with more constant itching, particularly at night, interfering with sleep.

I go for another biopsy in 4 days to follow up on the 1 of 4 biopsies (pre-procedure) that is of concern. This will be under "deep twilight" as an outpatient at the hospital, as before, though not under the general anesthesia I had the first time, in early Feb.

I understand I can go back to the Clobetasol after the healing is complete, but I expect to be going for 6-month checks with my Gynecologic Oncologist for at least the next 5 years, and that it will need to be followed closely for the rest of my life. I only hope this last week of itchiness is temporary, as I had no such issues pre-surgery. The Clobetasol I used as needed before the procedure I hope will be all I need to manage the LS going forward. But it is never going to be "healed", or cured, or gone.

But, as you may have heard, everyone is different. Speak with your OBGYN, ASK Qs, specific Qs, and don't feel hesitant to do so.

Happy to answer more Qs if that can help. It really helped me to read the ONE posting I saw on cancer.org (American Cancer Society), even though it was posted in 2014. I recently posted an answer there in response to another LS patient's Qs.

Best wishes!

Thank you Brandi!
I have an appointment on Tuesday for a general gyn appointment.
Clobetasol once a day seems to keep this at bay. I will have it watched closely though as I read it can transition to skin cancer.

Sounds good! Yeah, keep on top of it & you should be in good shape! 👍

Forgive me @alju if I've already corresponded with you here about this, but I'm going back to this topic to read earlier posts to see what people have experienced who have lichen sclerosus (LS) like I've had diagnosed for about 40 years. But it's only in the past few years I've had flare-ups, and I have been using Clobetasol propionate 0.05% for a number of years.

But, briefly for now, I am still recovering from the laser ablation (with a plasma jet) surgery I had in early February. I can't take a bath or use the Clobetasol until this is completely healed from the laser ablation, which I understand kills a thin layer of the cells of the vulva. I had the entire vulvar area subjected to the laser ablation. 4 biopsies were taken before the ablation, and 1 of them is concerning, so we are going in in 4 days to biopsy about a 1-inch area to see if it requires further treatment/surgery.

So, I will go back to the Clobetasol after this latest biopsy heals, and hope that what I've gone through in recovering from the laser ablation will be in the rear view mirror....forever! BUT, I understand I will need to come in to the doctor for an exam at least every 6 months for at least the next 5 years to stay on top of this. I was diagnosed with VIN II/III - a precancerous condition developing from the LS. VIN = Vulvar Intraepithelial Neoplasia.

Here's hoping the biopsy is not cancerous. I will have an exam & planning meeting with my gynecologic oncologist once the biopsy results come back - in about 2 weeks.

This is new territory. Best wishes to all here - it is absolutely astonishing how many women suffer from this, and that there is so little understanding of its cause, possible autoimmune and genetic connections, and no cure -- yet!

Hi @hopeful333 - please read my most recent post of a few minutes ago to answer at least some of your Qs.

In my case, laser ablation was to remove precancerous skin / cells from a thin layer all around the vulva...precancerous cells arising from the lichen sclerosus (LS) condition I've had for 40+ years, but which didn't bother me until recent years.

The recovery - in my case - is going on now over 5-1/2 weeks, and I'm facing another biopsy in 4 days to further examine a troubling area. I'll leave it at that for now.

Happy to try to address other Qs if I can be of any help. I did go to cancer.org (American Cancer Society) and was able to see a post (from 2014) of a person who underwent laser ablation. Even though that was a while ago, it helped to be able to read a little from someone who experienced it firsthand.

Best wishes ...

@rashida - I've been trying a version of Charmin that is for "sensitive skin"...since I've been suffering as I've been healing from the laser ablation for the past 5-1/2 weeks & continuing...the pain, and now the itching, has been so extreme, I'm not sure toilet paper could make any worse of a recovery for me.

I've heard & read that a damp washcloth can be a better solution - but it can start to be a lot to keep on top of...

Take care.

@brandysparks Thank you for your 2 very helpful/informative posts! I’m sure I’ll bookmark your name for future reference!
Would you encourage other women to go through this laser treatment?

Yes, if they are diagnosed by their gynecologist / gynecologic oncologist with a precancerous condition (such as VIN) that they respect and feel is current on managing this condition.

It is not a cure - at least from what I've been told by my doctors, and from all the research I have done (in academic, research and governmental sites and publications), and that I continue to do.

If the laser ablation (with plasma jet) is what the Gynec. Oncologist recommends to minimize (if not remove) the threat of it becoming a cancerous condition, then by all means I would recommend it.

Thank you for replying. You are going through a horrible ordeal ; it sounds so painful and I know you're suffering. I am so sorry. Yes, more attention and research are needed on this dreadful condition so women don't have to endure such drastic and painful procedures. My best wishes to you that next biopsy will be negative.

As an RN,
I am wondering if a peri bottle used by post partum women for cleaning after a vaginal tear would be the answer.
I also wonder if a foley catheter post ablation would help with healing and stop the pain from the urine burning the ablated area.