Worried- vulvar cancer/VIN

[SleeplessNights03]

I'm terrified I have vulvar cancer. Last week I saw my GP after noticing some brown marks on my labia, and got a referral to a gynaecologist specialising in vulvar disorders who I saw on Friday. The GP didn't think a referral was needed but I pushed for it as I wasn't happy to wait and see.
The gynaecologist was very thorough. He noticed a whitish, slightly raised patch on my perineum and said I should apply Trimovate cream for 6 weeks in case this was due to a fungal infection and then to come back for a follow up appointment. If the patch was still there he would do a biopsy as it could be VIN. He also said it could be normal but I can't seem to register that.
I'm petrified. I'm fixated on the worst case scenario. He said that it could be nothing at all but everything I've read suggests that this discolouration of the skin is due to vulval cancer/VIN. He said it was not Lichen Sclerosis as there was no evidence of sclerotic changes.
Has anyone had a similar experience? I know googling is the worst thing I can do but I'm trying to find reassurance (and not succeeding).
One thing worth mentioning- in the last couple of years I have occasionally used Eumovate ointment on the perineum if it felt itchy, which it might 2/3 times a year. This was very occasional- but I've read ointments like this can cause hypo pigmentation- can anyone shed any light on this?

Hi just read this after searching for people’s experiences of LS.
I came on here because I have found a white patch (tiny- maybe under half a cm) inside my labia, and it’s shiny, but is kind of indented? And two more on the outer labia. Unsure what it could be- thinking the worst.

I only checked myself due to itching and redness down there.
hopefully I’ll get in touch with the GP tomorrow.
no advice but just wanted to say I’m here worrying too, your not alone. X

Gosh I wouldn't even notice a discolouration down there tbh 🙈 I don't wax but I do shave but I've never spent a massive amount of time looking at anything.

I think you are right to get checked but if GP didn't even think referral was warranted in first place then I wouldn't be too concerned as they refer for anything at all these days.

Vulval cancer very rare. Try not worry and yes those ointments can thin skin/cause discolouration

@Mrsworried1 let me know what your GP says. From the reading I've been doing, yours could be Lichen Sclerosis. Best of luck- it's so worrying isn't it?
@Sockmate123 thank you. You've made me feel like I'm not going mad. I never check down there either so it's hard to know if that is how it always is or if it's something new. Do you have experience with Eumovate/similar ointments?

Yes I use for a cyst that flares up in between my bum cheeks from time to time

Thanks, I’ve just been to the doctors but saw a nurse. She doesn’t know what the white is and wasn’t interested.
she said I’m very red down there and did a speculum check and cervix is red. She did swabs and wants a blood test.
im just more worried than before now!

I've had VIN stage 3 twice now. The first time they removed the patches (for want of a better word) surgically. The second time I was given quite a strong cream to use down there for 3 months. That was quite a hideous experience but seems to have killed off the cells. I have to go back in 3 months to check again as I was too sore to properly check at my last appointment. But the consultant was cautiously optimistic. I know its easy to say try not to worry, but coming from someone who has done this twice now. Please try not to worry.
And stay off Google 🤣

@livingdownsouth did you have symptoms before you were first diagnosed? Do you mind if I ask how old you are?
Thanks for sharing your experience- really
hope you're okay now.

Possibly TMI incoming.

I felt a lump when wiping myself after weeing and decided to see if it would go away on its own. It didn't, it turned into a small white patch that was slightly rough to the touch. Maybe the size of a little fingernail? I went to the GP who put me on the 2 week pathway. Biopsy showed VIN 3 and I was booked in for surgery. From the GP appt to surgery was just over 2 months.

I'm the wrong side of my mid 50s but don't like to talk about that too much 😄

@livingdownsouth thanks for replying. I'm more scared now! I'm desperately trying to find what a benign vulvar lesion could be but not coming up with much.....

Ah, I'm sorry. I didn't mean to scare you. It was more to show you the steps that I went through the first time. The biopsy was fine as they do it under local anaesthetic.

Please stay off google.

@livingdownsouth my main problem is I can't find any benign reasons for my symptoms when I Google. Although apparently they do exist- they're just not drawn attention to.

@SleeplessNights03 hey, just wondering how you're doing? Hope you've stayed off google 😆

Yup, I had the same. Small lump which they thought might be a VIN. Did a biopsy and it was diagnosed as LS. I said to the consultant 'What a relief it wasn't a VIN' and she said 'Even if it had been it would just have been treated quickly with topical medication.' A VIN would have been a big deal for me, but not for her, apparently.

@livingdownsouth I'm worried but trying to keep a lid on it. I go back to see the consultant next week. I spoke to a lovely nurse from the Eve Appeal before Christmas who was reassuring and knowledgable. Thanks for asking- I keep waking up in the night and panicking.
@Bideshi thanks for sharing this- makes me feel slightly better!

Hi op, just wanted to let you know you're not alone in the worry.

In 2016 I had a biopsy which diagnosed VIN3. It was removed under a general anaesthetic and then i saw a consultant every 12 months for review.

It has never returned and I've been discharged now, so no more checks which is annoying as I like to have it looked at.

But my point is, it's very very rare for it to turn to vulval cancer, even if you do get a diagnosis of VIN. They will literally just whip it off, and send you on your way, no follow up treatment etc. unless necessary. I have wasted months of my life prodding and inspecting my fanny needlessly!

You will be fine x

Thanks so much @overthinkersanonnymus
My mind goes to very dark places, especially in the middle of the night. It's reassuring to hear your experience of it.

Hello all - reassured to find this thread when searching for info. Just home from a vulval biopsy and it wasn’t much fun but wasn’t as bad as I expected. Waiting for results which could take 4-6 weeks 😭

@UntamedShrew hello. What symptoms did you have that you were referred for a biopsy?

Hi,

Just popping back to echo what overthinkers has said. If it is VIN3 you will literally just have that bit whipped away. It's taking longer to recover from this cough than it did from the surgery 🙄.

I have also spent too much time checking out my fanny!!!

I was very unlucky to have a second "patch" discovered and was offered a 3 month course of a very strong cream instead of surgery. Hopefully won't need to make a choice, but f there was a next time I would choose surgery over the cream. Day surgery, in and out. Sorted.

I didn’t have any symptoms like those described above but had an adjacent lump.

@UntamedShrew do you mind if I ask what the biopsy was like? Were you given anaesthetic for the procedure? How does it feel now? I don't know what to expect after- what I'll be able to do etc. I'm having one on Friday and getting more and more worried.

I was given a local anaesthetic which is an injection. Not going to lie it did sting but it really was not too bad, I just did deep breaths and it was fine. The biopsy I didn’t feel at all due to the anaesthetic. I have two dissolving stitches, didn’t feel those either.

I was given some anaesthetic cream to bring home but I haven’t needed it, haven’t even opened it. Just took a couple of paracetamol after the biopsy.

I walked home, slower than usual but was fine.

I was worried it would hurt to pee and shower but it honestly hasn’t.

Take a sanitary pad as the hospital ones are terrible!

And write the afternoon off afterwards, you’ll feel messed about with which isn’t nice so get some treats and watch a film - I think we are owed that. I had a lazy weekend but feel back to normal today.

I hope this helps. Basically steel yourself for the injection if you’re a wuss like me and then the rest is bearable. And hopefully it’ll be worth it as well both get peace of mind with the results (thinking positive!). Try not to worry.

Thank you @UntamedShrew that's so helpful. Did they say it was okay to shower etc the same day?

Yes just no baths

Thanks so much @UntamedShrew
I am also a total wuss when it comes to pain so the injection won't be fun. The wait for results will be the worst bit though.