All quiet

Hi, you will be fine. Look for my posts i have put on. I've had a full vulvectomy, total skinning and removal of some lymph nodes. Pain relief was codine for me. Anything else you want to know just ask me x

Thank you,  that helps.  So sorry to hear of the surgery you have had xx

I find these forums kind and helpful but very quiet. If you need to talk or a more urgent response I suggest you call the main 0800 MacMillan number and talk to someone, they're wonderful. Do you have a Maggie's centre near you? Actual centres at hospitals are wonderful. 
For folks like us with rare cancers there aren't many about to liaise with as personal experience. I hope you call the main no and get the help you need. 

Thanks, just awaiting my macmillan buddy for support. X

Sorry you are going through this and I am sorry for not seeing your post until now.  I had a radical vulvectomy and bilateral lymph node removal in 2023. My biggest pain and discomfort was before my surgery and managed to keep on top of the pain post op by just taking paracetamol.  I have lots of comments on my blog, just click on my name and there are my tips as to how I managed.  You will get there but just give your body the time it needs to recover and be kind to yourself.  I hope your Macmillan buddy helps you too.

please keep in touch and if you have any questions then please do ask.  

Thanks, can't find your blog though x

• Click on her name

Hi lizzy58 

I have VIN3 , I'm due to hear what my operation is going to be !!

I see you have had a vulvectomy!! I'm so worried if this is my treatment too.

My head is spinning, and my anxiety is very high. How did you cope with the operation!!  How long before you healed and got back on with your life !! 

I hope you dnt mind me asking these questions, I think I'm probably looking for reassurance as the operation ( what ever it is ) is freeking me out . 

Hi. I had a full vulvectomy. I got diagnosed with cancer of the vulva in November.  I had a ct scan, thankfully it hadn't spread. I had my surgery on Jan 2. I was put to sleep, it took around 2 hours. I was in hospital 4 days. I also had some lymph nodes removed. I had drains in till I came out with a catheter. I felt no pain, I was given codine. I've been off work for 3 months so far, everyone is different.  I also suffered with Lichen Sclerosus, so I had what is called a total skinning. The new skin is growing back slowly. I was more in shock than terrified, I just wanted the surgery to get rid of the pain. I've had the vulva area removed and that area is closed up, i have just the opening of the vagina left. Feels strange, getting my head around it. It's been life changing but at least I'm cancer free. Forgot to mention, I think the urethra was repositioned, also I have lymph fluid and nerve pain xx

Thanks for your reply, I have VIN3 in the vulva. I also have two small growths, the gyocologist took a biopsy, this is where they found the VIN3. I dnt think my surgery will be as avasive as what you have so bravely gone through. I'm thinking maybe a skinning or laser treatment , any way tomorrow morning is when I get my answer.  

You take care lizzy58 - keep being the strong woman you are xx