VIN3 ulceration

FormerMember over 5 years ago

3 replies
26 subscribers
4007 views

Hi all,

I was diagnosed with VIN3 via biopsy after I’ve had a non-healing ulceration around my urethra for the past three+ months. I have not had my appointment with gyn/onc yet and I am really nervous. I have so many questions! I would like to ask them here, not for medical advice, but just others’ experiences. Also, then I’ll have all the questions down so I can remember and bring them up with the doctor when I do go in.

Since my VIN3 presented as an ulceration, does that make it more likely it is cancerous?

What is the likelihood of recurrence after surgery?

The ulceration is around my urethra... How will healing go after surgery? Will I have a catheter?

The ulceration is encroaching my clitoris... Is there a chance that you’ll discover you need to remove more than just the area around my urethra during surgery and I might wake up with more missing? (Really worried about my sexual function... I’m 32..)

Will it effect my ability to carry another pregnancy/deliver vaginally?

What will future appointments look like? What is surveillance like for recurrence? Anything preventative I can do?

Will I be put under for surgery? Will I have to stay overnight? What will pain control be like afterwards?

Whyyyyy did this happen to me?! :(

latchbrook over 5 years ago

Hi and a warm welcome to the online community

I don't have any experience with VIN3 but I noticed that your post hasn't had any replies. You could have a look through previous posts in this group for the answers you're looking for and also post them in ask a nurse and one of the specialist nurses will respond within 2 working days.

I have found this information about VIN3 for you which might help you further.

"Never regret a day in your life, good days give you happiness, bad days give you experience"

FormerMember over 5 years ago

I’ve had vin 3 for 10 years and I had cancer of the vulva in 2015. Keep an eye on your lesions and if they start to turn whitish then you need to see your doctor.

the likelihood of reoccurrence is different for everyone it depends on your immune system and if you smoke or not.

No as long as it’s precancerous you can get away with having just the ulceration taken away.

It shouldn’t affect your pregnancy unless you have the hpv virus you may choose to have a c section to prevent your child being infected through labour.

You will go under general anaesthetic and the pain relief for after is pretty good.

I don’t know why it happened to you I ask myself the same thing every day but good luck xxx

FormerMember over 5 years ago

Elisay 024- so sorry this happened to you. A few thoughts:

- typically a catheter is not necessary after a wide local excision of the vulva but yours involves the urethra and so not sure.

- it is important to have a conversation with your dr before surgery re what he /she has permission to do while you are under. I have had several surgeries and on a few we discussed exactly that- can he take more if he deems appropriate.

- you can do some preventative treatment. I use triamcinolone ointment and sometimes another stronger steroid ointment. If your underlying cause is lichen sclerosis VERY important to keep it managed by using the meds, following instructions re bathing, care etc

- future apptmts will likely be about every 3 months after you recover from surgery or shorter if doc has concerns

- re: recurrence: varies a lot from person to person. Mine didn’t recur for several yrs but then cancer was very large. Key is to see dr often and get a second opinion if remotely uncertain. Don’t worry about offending the dr- very common and part of the process

let me know if you have addl questions. Best of luck

More from this forum

VIN3 ulceration