Connect
← Return to Gynecologic Cancer Support Group: Women of S-Teal
Event
Gynecologic Cancer Support Group: Women of S-Teal
Event Date: December 11, 2023 | 5:30pm - 6:30pm ET
Comment receiving replies
I think that I actually had it for 5 plus years. Finally got a diagnosis. Have you had surgery? It was tough for me. Emotionally draining and there is literally no support. I am seeing an ND because I will not let surgeons just keep hacking away at my Vulva!! Once was enough. Please let me know how I can support you. There doesnt seem to be many of us out there. I am only 59 and this is rough.
LRCG
Replies to "I think that I actually had it for 5 plus years. Finally got a diagnosis. Have..."
Connect
So sorry you are so young and been through the surgery. I have had it a little over a year. At first I thought it was just irritation from wearing yoga pants, then decided to see GYN. BX was also sent to U of Michigan, then MD Anderson.
I did decide to go to MD because we were in TX for 2 months. I saw a great GYN oncologist. She advised me on options and told me often if excised it came back. Thus I did not go that direction. I have used the cream since last March at different doses depending upon the reaction. Am tied of the itching and burning and have a new satellite. I am scheduled for biopsies in a week along with a vulvascope. My oncologist here has spoken with mine in TX. I was also presented at Oncology GYN case review..
Yes, no one knows much, little research, few cohorts. You are younger than I and am so sorry you are struggling with this. What are you doing at this point? Anything relieve your itching and burning? Please get back when time. At least we can share some things which may help. I will let you know what I hear after the bxs.