Just Home from VIN II/III Laser Ablation (PlasmaJet) Outpatient Surgery

BrandySparks · February 9

Greetings to those who have posted in the past and not heard much from others about this condition (Vulvar Intraepithelial Neoplasia / Lichen Sclerosus), the surgery and the aftereffects and next steps.

I'll start with, briefly: yesterday (2/8/2024) I had laser ablation outpatient surgery for VIN II/III, diagnosed after my last OB/GYN visit in December 2023, when the Dr. took 2 biopsies.

I've been diagnosed with Lichen Sclerosus since about 1985, but for a long time was not able to find any info on it, let alone what it could lead to. Of course, no Internet in those days, so limited research capabilities for patients anyway.

My Gynecologic Oncologist is wonderful, and immediately was calming and developed trust and evidenced her credibility in my mind. I've asked a lot of Qs, and generally always do (:-).

So today I am very surprisingly pain-free, in bed and in using the toilet - so far. I need to read the instructions about "sitz baths", as I understand I'm to use them (beginning today?) 4 - 5 times/day...probably to minimize potential for infection and enable continual healing.

I am mid-60s, so my concerns about performance and aesthetics are reduced as I am not so focused on sexual activity - just, or more, about health. But, believe me, I did not want to feel I'd been "cut up" (to put it bluntly), so trust and a doctor who appreciated "quality of life issues" was/is primary.

Used Chlobetasol proprionate 0.05% as prescribed for many years; before that they were recommending a testosterone cream. I understand Chlobetasol manages the Lichen sclerosus (LS) condition through the years, but the LS must be watched/followed, as I have, and now it has become at the precancerous level as VIN II/III.

I can add more if helpful as I go forward from here. I am calmed to know I have a meeting in 11 days with the GynOnc's office's PA, and I will meet with my GynOnc MD 2 weeks after that for follow-up. Then I understand we meet every 6 months for 5 years to follow the condition. I have also read - but need to verify with my MD* - (*and I only read academic, scientific and NIH sites that I can access for this kind of serious, credible info on this somewhat still limited in its research and knowledge base condition (the LS, and now the VIN*) - that there is a 70-75% chance of recurrence within one year, and it may go on from there. I mentioned this to my Gyn/Onc post-operatively, and she said she'd need to check the data, but she agreed it was likely it would recur,

I truly hope this helps, as I was tremendously relieved and helped by the posting in 2014 on her experience, and her detail about the creams, post-op realities, and daily care called for after her ablation.

And, finally, I understand that the imiquimod cream that is an alternative to the laser ablation is burning (quite painful), and must be used for a full 4 - 6 month period. I did not want to live with daily pain for that long.

I am new to this posting, so I hope I will know if someone reads it, and, as well, may need more info that I can share along the way.

Best to all who travel here.

NoTimeForCancer · February 29

Miss BrandySparks, while it is a little quiet here sometimes, I know anything you post will have value to the next woman who comes along and reads your journey.

I am a visitor from the Uterine/Endometrial page, but my heart goes out to those who are treated for the rare gyn cancers. Looking for someone for some cancers is a challenge, but for rare cancers, having someone to chat with, or in this case read about, is going to be helpful.

Hugs dear one

BrandySparks · March 1

https://csn.cancer.org/discussion/comment/1713638#Comment_1713638

Appreciate your post. I do hope you are well too.

Since that first day back, unfortunately, excruciating pain at nearly every bathroom visit became the norm. I had no idea this was a possibility, but apparently I may be one of the few for whom it is this severely painful. I also had no heads up about how long this could go on for (it's now been 3 weeks), and that I may not be able to attend to some activities, including my once weekly PT job. Fortunately, they've been very supportive, but I recently mentioned to a nurse on the surgical team that they needed to make patients aware of this possibility, even if it's a possible range of outcomes, durations, and such.

Being in my mid-60s I was concerned they assumed I do not work (though I have all my life until the past few years) but she said they leave it to the patient to advise the team that they work and ask whether that could be impacted. I strongly advised the responsibility should be on them to advise of the time that it could take to recover. Otherwise, I was given the (optimistic, supportive) impression by my referring GYN MD that this would be a quick "one and done", in so many words, and move on. Not at all.

Again, hope this may be of some help for others on this lichen sclerosus/VIN II/III journey. Also, I've tried nearly everything available - by prescription and OTC - and absolutely NOTHING has calmed the excruciating pain upon urination/attempted BM but good old Vaseline. Thank goodness for that! I will be trying an OTC product that that nurse thoughtfully recommended from another patient found calming - this patient just had radiation treatment this week for her condition: Cicaplast (by La Roche Posay). In just the past few days the excruciating pain at bathroom visits has become more often crazy itchiness that lingers at times throughout the day. I'm not complaining about that intense itchiness in comparison to the excruciating pain - which I just had - but it is something that one may not be able to tolerate for long if in public.

If I can offer other creams/ointments/sprays I've tried, I can reply also with those.

Am thankful the team I have is reachable, so far accountable, and compassionate. Wishing this for everyone. A new phase of my life. Optimistic, though!

skippingLiz · March 16

Hi BrandySparks. I hope you are feeling better and experiencing some healing. I was diagnosed with Vin 3 a week ago and will have surgery in 10 days. I'm worried about it. Do you have any advice or recommendations to get through it? 💙

BrandySparks · March 18

Hi skippingLiz!

I can certainly share my experience, and then ask for more Qs, if you have any. As it was (I think I mentioned), I had no info on what to expect, short of what the person who posted in 2014 shared - and that really helped.

If what you are having is laser ablation surgery, that is what I had in early February (done with a "plasma jet" in my case - apparently safer for those using it (the physician/s) than the CO2 laser); in my case it was done with general anesthesia, determining the "deep twilight" anesthesia wouldn't ensure I wouldn't have any kind of reflexive reaction to the procedure.

I'm nearly healed (I think!) from it, but on this end of the healing, the itchiness is more present than the ~3 weeks of excruciating pain I had. That pain was "only" when using the bathroom; the itchiness has been more present, unfortunately mostly at or just before bed. It has interfered with my sleeping, and affected my sleep schedule, as I've been up a few nights for hours because I couldn't ignore the itchiness, and so I couldn't fall or stay asleep, until I'd been up for a while in the middle of the night. I pray this itching is temporary, as I'm not to use the Clobetasol propionate 0.05% (steroid cream) that I'd normally use several times a week pre-surgery. I'm told I can use it again when the area is completely healed.

Further, in 4 days I will have a biopsy of one particular area that evidenced some concern (out of the 4 biopsies taken pre-laser ablation). I understand this area of concern is about the size of a pencil eraser, so the 1-inch elliptical area should cover that for further microscopic analysis.

To kind of wrap it up for now, my gynecologic oncologist ("GO") (who has done the procedure) and I will meet 2 weeks after this latest biopsy, we will go over the results and make a plan from there on how to proceed.

As I have researched it (and my GO will confirm this when we next meet), I have seen there is at least a 70 - 75% recurrence rate of the - precancerous VIN II/III? or the possible vulvar cancer? (that I have not yet been diagnosed with). Again, check with your doctor on this; I will.

Unlike other posts I've seen, the laser does not ensure it (the lichen sclerosus, the VIN II/III) is completely gone, or that any symptoms are vanquished. Lichen sclerosus ("LS") is for life; it is never cured - yet. The Clobetasol manages it.

I had minimal issues with the LS - in terms of any discomfort - before this surgery/procedure. Although (somewhat understandably) the doctor won't pin down a typical recovery period, mine - currently at 5 weeks - is longer than others, with the caveat that everyone is different. I might have mentioned I'd been diagnosed about 40 years ago with lichen sclerosus, but didn't have any issues with it until about 10-15+ years ago, and that is when a cream (that was testosterone-based) was prescribed by my OBGYN. Since then, Clobetasol has been the standard - and the one I've used for many years now, more often at outbreaks of sloughing skin, then less often, if at all.

I hope this has helped. In conclusion, for now, I would not go with the assumption that the LS will be gone forever. But, again, everyone is different, but the LS never goes away. It just seems there is a spectrum of how individuals experience it.

Also, I understand that I will be having LS checks every 6 months - for at least 5 years - with my GO. I expect these checks will need to go on for the rest of my life, which could be anywhere up to 25-30 years from now - but, of course, who knows? 👩‍🦳 I can reply with all the medications I tried to ease the pain post-surgery, if helpful, but the only one that has worked to calm the pain after the bathroom, and after the itchiness, is the Vaseline. (But I will be trying some other creams for the itching soon too.)

Sincere best wishes, and hope this calms some concerns or Qs. Talk with your Dr. ASK Qs, and narrow down your Qs to get the kind of answers that help in your case.

https://csn.cancer.org/discussion/comment/1714014#Comment_1714014

Forherself · March 19

https://csn.cancer.org/discussion/comment/1714073#Comment_1714073

Hi visiting from the endometrial page. I hope you talk to your doctor about the itchiness. They would want to know and if benign then there are creams that can treat it.

BrandySparks · March 19

https://csn.cancer.org/discussion/comment/1714088#Comment_1714088