I totally understand your frustration with the doctors, I met with the same uncaring attitude, like they just wouldn’t bother to do a complete work up of my complaints, which started 4 years ago. Have not been able to wear underwear without my skin being rubbed raw and burning since then either; they all prescribed estrace hormone creams which did nothing. One doctor even told me that the irritation was because I was wiping myself wrong! I gave up on all the doctors. Then about a year ago a small little lump appeared on the outside of the vulva, which eventually became very painful and started growing and extremely painful. I decided to try a different doctor again since there was obviously something there. She did a biopsy right away and it came back as stage 4 vulvar cancer, or vin 3. It has spread all over now, thanks to careless doctors that wouldn’t go the extra mile.
I’m 67 which is the normal age range for this cancer. I’ll be seeing the onocologist March 18th so I’ll find out more. But I refuse to get radiation or chemo, so I guess surgery will have to do. I’m not afraid to die at all, but sure didn’t want to end it this way...

I had a growth removed from my vulvar in 2018 and had been asking for help with itching for over 20 years. Lichenen schlorsis was the diagnosis and the itching just got worse and I was told there was nothing that could be done. I kept asking and then a growth developed and when I got to a specialist, they almost wouldn't let me leave the hospital. I had the growth removed and refused any chemo or radiation, but none was recommended. I do all kinds of alternative medicine and physical therapy, life center healing light, cranio sacral, and I am on maintenance ointments I put on 5 days of the week. It has been good ever since. Don't be afraid. Fear is the enemy. Pursue that which brings you hope, joy and courage. You can find a way to heal yourself. I also used CBd ointment but no longer need it. But that helped when the pain was the worst and I have told everyone, but the traditional medical world doesn't care or have anyone study that for it's effectiveness. I recommended it to my older sister, at 72, and it relieved so much pain for her she slept well for the first time in years.

Yes I also understand. Had been complaining to primary care physician for about 4 years about itching that had developed while I was in a hospital out of state when I had a cerebral hemorrhage and he would give me a cream and then send me home and it just didn't get better. About 20 years previously I had CA in situ and was never told I needed to be treated with HPV vaccine or anything else. Guess they didn't know back then but feel like my primary care should have noted this on my chart. I mean that is what a primary care physician is for. Then developed a lump on the vulvae and primary care said it's just a cyst and will go away. Didn't go away and then
it started producing some mild pain in the area. Called the primary care office and asked for referral. Took me a month to get referral with Covid around. Went to GYN and he said I need to do a biopsy of this lymph node here and see what we get. Well we got squamous cell and he referred me to Oncology/Gyn in another town which is a larger town about 30 miles away and I had to wait another month to see him. He then sent me for CT guided bx and came back with stage 3 vulvar cancer and he recommended Chemo followed by surgery and then more chemo and radiation. I received no information on how to take care of myself and prepare me for what was to come. My chemo is FU5 and Cistoplaten which is majorly strong. The medication is to be infused continuously over a 5 day period and so you must be in hospital during chemo. This being during the Covid Crisis means I can only have 1 family member visit per day. They must come up and stay in my room for the entire time they are there. There is so much more that I wish I had been told. Simple things that would have helped me prepare and would have made this journey easier on both me and my family. By trade I am a Registered Nurse and worked for 20 years in hospice but I did not know all I needed to know to help myself. I've had the help of friends and co-workers who I have worked with over the years that have all helped me. I'd like to be able to help others get ready for their chemo in ways that will help them cope and to help them get the things ready that will aide them in their journey in a cost effective manner. It's really tough when suddenly you can't work and bring in an income and suddenly you have all of these expenses lining up in front of you. I haven't found a way to effectively reach out to others just getting this diagnosis. Many of the things that I have to share with them would cost little or no money. It doesn't all have to be prescription to be effective.

Thank you AnnaJean. I am just starting this journey and feel exactly like you do and am not a nurse! I have been told nothing about what to expect and am trusting the internet for help. It's a sad state of affairs. If we had breast cancer, I think it would be a different story... we'd be joining a club. With vulvar cancer, we are each aolne and I wish we could do something about it - but I guess this message board is a start. Praying for you. Cathy