Hi everyone,
My name is michelle, I'm 48 and go into hospital for a wide local excision of the vulva on Tuesday! I am petrified. I've already had 3 lots of surgery for Ain 3 which although sore for a number of weeks after, I coped with the experience by having my partner with me until I went to theatre. This time is different due to covid, my partner can only drop me off outside , to make it worse I could be in hospital a number of days , hoping the surgery goes ok and I only stay for 2/3 days as no visitors allowed. The thought of having to go through all this alone is freaking me out...to the point I'm thinking of cancelling the surgery.
Those of you that have been through this can I ask " did the surgery cause disfigurement down there"? The abnormal cells are completely down 1 side of the vaginal wall and showing on the other but not to the same degree, also in the perineum. How do they remove these aswell as a 1cm clear margin when the skin in these areas are extremely thin?? Sorry for the rant but I am so scared this time round. Any personnel experiences you would like to share would definitely help. Also any suggestions on dealing with the pain/ stitches afterwards.? Xx
After my 1st visit to collerectal it was then decided I needed a sigmoidoscopy. They explained I would be given a light sedation. However on the day I decided against as it meant putting a cannula into my hand- I'm needle phobic and cant stand anything that requires inserting into a vein!. I choose to try the gas and air and you know something I was absolutely fine! Didn't feel any pain just a weird sensation like butterflies in my tummy !. However if I needed a colonoscopy I think I would have to accept the sedation as that involves the whole bowel. This next sigmoidoscopy will be much easier as they're doing it at the same time as the pap biopsies so will be asleep , this is the future plan for now with regards my AIN .
Can I ask, on your next procedure are they removing your lymph nodes from your groin? Have they not mentioned chemo or anything for treatment of the cancer? Now i know it's gone from VIN l to VIN lll in a year I'm starting to fear the worse with the biopsie results. I can't help thinking that eventually it will be cancer of the anus and cancer of the vulva 
xxx
You’re very brave! I would have been too scared to stay awake lol.
My next procedure will include a sentinel lymph node biopsy. So they will inject some dye into the area that the tumour was removed and see where it travels to. My understanding is that could be just one node or it could be several. They will then remove just them nodes initially and biopsy them. If they are positive they will then remove the rest, if not they will leave them alone.
They haven’t mentioned chemo or anything at this point and when I spoke to my nurse initially she said “no one is talking about any chemo or radiotherapy”. I now wish I had double checked whether that was just for now or whether it’s likely to change. It’s worth knowing that my cancer was only a little bit and that may make a difference. Mine was VIN III, with a small amount of cancer. Initially it was staged at stage 1, but my new consultant has provisionally staged it at 1b. That could change again if he finds anything in my nodes, but to give you an idea it’s an early stage cancer and so far no mention of chemo or radiotherapy.
I completely understand your worries as I too have similar worries, however it’s worth reminding ourselves that they remove the VIN/AIN and then keep a close eye on us to prevent that from happening. Mine had already progressed to cancer, but again I have been told I will be kept an eye on so closely that should it return then it will be spotted very early on. All that said, there’s not a day that goes past that I don’t worry about constant reoccurrences. I have everything crossed that your biopsies come back clear of cancer. If your biopsy results changed whilst you were there I’m hoping that means they have already done some sort of checks to know that it’s VIN III. I’m always here if you need a chat and happy to answer any questions if I’m able to xxx
Hello there, how are you? Hope your recovering well from your surgery? Sorry for the delayed reply, I've really been in the wars. Ended up back in hospital with an infection . It was awful- in alot pain but thankfully kept me topped up on morphine. It's been a really slow recovery but started to get out and about abit this last week. The biopsies confirmed VIN lll thankfully but they've said e same to me - need to keep a real close eye on me - go back in 4 months. They've also explained the AIN lll is far more serious than the VIN and I must arrange my appointment for day surgery a.s.a. Hopefully in the next 2-3 weeks I will have recovered enough ' down there' to go through it again! Fingers crossed less invasive 
. Anyway, take care of yourself,hope to hear from you soon xx
Im so pleased to hear from you, I often wonder how you got on!
I’m not too bad, the recovery from this op has been better than the last, but I’ve still managed to pick up an infection which has slowed things down. I’m grateful that I’ve had a better time of it this time, but frustrated to have picked up an infection and just as that seemed to be passing I’ve picked up an infection in the wound that is close to being healed!! I’m still waiting for my biopsy results, I was told my nurse would give them to me in 2 weeks. It was 2 weeks on Wednesday and I was told they wasnt ready, but hopefully today. Today they’ve told me I have to wait till after they’ve been discussed in a meeting on Monday. I know it’s not that far away, but it’s very frustrating to be told one thing and then not be allowed them! I’m seeing my consultant on Monday so hopefully they will tell me them. I’m so worried as the dye travelled straight to the one node that’s been up for months!
Sorry to hear you’ve had a tough time! The pain with an infection is unreal isn’t it. There’s no explaining it. I’m glad you are doing better now though. Just don’t over do it! It’s easy to think you’re doing better than you are and the next thing you know you run into problems again. I’m so pleased your biopsy results confirmed it hadn’t progressed! I really feel for you having to have another op so soon though :( I appreciate it needs to be done sooner rather than later though! I wish you all the luck when it does come to the time for your next op and I have everything crossed this it will be your last op! Xxx
Hi Shelly72,
Its lovely to hear from you 
I am good thank you. I have my worries around the VIN or cancer returning, but other than that I’m removing well.
Glad you’ve had your surgery for the AIN, what a wait you have had for your results though! Have they given you any idea as to when you may hear from them?
I am sorry to hear you ended up with another infection and that the dreaded itch has returned. Your team sound great and very thorough though which is good. I have everything crossed that it hasn’t returned. Please do keep us posted.
I have had a slight itch on and off and was seen quite quickly after speaking to my nurse. They had a quick look and said all looks ok, so I’ll wait to see how I get on with my next appointment which is next month. I assume they will have a thorough look then. I think I was being overly cautious though as the itch seems to have disappeared again now. I had my sentinel nodes removed, so just one from each side. Both were clear thankfully!
Vulval cancer warrior xx
