New to the Boards

Hi and a very warm welcome to the online community

I'm very sorry to hear about your recent diagnosis and that this isn't the first time that you've had to deal with cancer.

As I didn't have this type of cancer I'm not going to be able to give you any advice about it, but I noticed that your post hadn't had any responses yet. By replying to you it will 'bump' your post back to the top of the discussions list where it'll be more easily spotted.

You could have a look through this information from Macmillan on vulval cancer, which tells you about symptoms, treatment and aftercare. I'm guessing from your username that you might be based in America so, if that's the case, treatment might be different there to here in the UK.

If you have any specific questions you could start a new post or have a look at previous posts by using the search bar.

Wishing you all the best 

x

Thank you for your reply. I have been having a hard time dealing with the fact I have cancer again after 20 years. That is why I looked at support groups. MacMillan was the first to come up for me. 

Thank you for the information I will definitely look through it. 

I wish you the best of luck,

Elizabeth

Hi Elizabeth, 

I am sorry that you have VIN. Did they tell you what grade it is? You would need a surgery if you have high grade VIN(2 or 3). I have been having those high grade VINs for a couple of years, they never disappear even if I had surgeries 5 times. I usually go to see GY oncology every couple of months. I had vaginal cancer in 2014 which is also rare cancer. I am 46 and live in the States too. My causes of VIN is from HPV. I hope you can get to see GY oncologist soon, but VIN is NOT cancer, just pre cancer cells. 

best wishes 

Kuma

Hey kuma, your situation seems similar to mine as far as the part of having a body that allows the hpv to live comfortably within my vulval and perianal region. 
how are you coping with it? I’ve been cut open 18 times already and tbh it’s really taking its toll on me mentally and physically. If you could offer me any sort of advice I would be grateful. I’m usually really positive but I’m struggling xx

Hello jodspods,

This has been really rough to me as well, I have tried EVERYTHING I could, but HPV does not want to go away. My doctor said that my body can not fight against HPV some how. So I am trying not to fight with it, just live with it. I get depressed and anxiety often, but trying to keep me busy. I work 5 days a week and walk my dog in the evening for 30 min. I have severe vaginal dryness and sore and burning in my vagina/vulva area. I am taking estrogen pills, but not always helps. I do not have much advise for you, because I am not doing special things to cope with. How are you coping with?

Hello Kuma, 

Thank you for responding. I’m sorry to hear that your body is being just as much of an annoyance as mine. Can I ask, do you have children? I’ve not had any yet and it’s something I’ve always wanted but it seems to feel like it’s always just going to be a dream of mine. 
I’ve been off of work for the last nearly 7 months as I was on furlough then I was due  back but had to have an operation. Just got over that one and got told I’d need more invasive surgery. So I’ve just had that done 2 weeks ago. Does your body take ages to heal? 
I can imagine how the dryness leaves you feeling bless ya. Do you use creams down there? My doctor gave me an ointment called dermovate have you ever used this?

My only advice is take each day at a time it’s how I’m trying to be but it’s hard some days and others it’s not so heavy on me. We are in the 2% of people who’s bodies just adapt to the hpv. Do you smoke? Xx 

Elizabeth

Have you been seen now? How are you getting on? I had surgery for vulva cancer last year, I suffer with lichen Sclerosus which got out of control and I was diagnosed with dVIN for which I had a WLE but results came back with cancer so had a hemivulvectomy and lymph node removal. Happy to share My experience if it helps

I have not seen the doctor yet. I have another month to go. No sure what to expect, they said it was Squamous Cell Carcinoma on the Perineum. They said VIN but that is all I know. They did say I will need wide surgery. All of that is from the gynecologist. I'm trying to get my endocrinologist to run tests to see if my first cancer is back, Neuroendocrine Carcinkma. Thank you for all the responses. I would love any advise. Do any of you have pain like cramping?

Elizabeth

Yes cramping and never damage pain which is like little electric shocks. After surgery I had pins and needles in my arms and legs for a while too. I also now have pubic lymphoedema and LP. Mine was SCC grade 1b, so caught early. I’m now having Bowel problems but have an appointment in two weeks, so I can ask more questions. Let us know how you get on.