I am writing this post because of a conversation Andrew and I had. He was telling me that he was at a meeting where one of the discussions was about supporting cancer patients. He mentioned my own struggle to find support and the wealth of information available online, if you know where to look. None of them had heard of sites like Cancer Buddies Network or Gyn-Gals. Most, in fact, hadn’t even considered that the Internet might be a good source of, not just information, but support for someone dealing with medical issues. I found both groups helpful, but due to the rarity of my specific type of cancer Gyn-Gals became a major resource for me. It still is.
In February of 2009 I went to Vancouver to have a prolapse repair done. Due to the fact I have Ehlers-Danlos Syndrome, and the extent of the prolapse, I opted to have the surgery performed in Vancouver by a urogynecologist.
While doing the surgery Dr. Wilkie noticed lesions on my minor labia and biopsied a section. A week after having my prolapse repair done I found out I had HPV related VIN III. VIN III is also called “squamous cell carcinoma in situ”. I had cancer of the vulva. I was devastated and desperate for information. The BC Cancer Agency was amazing and sent me everthything they could find on vulvar cancer,but none of the information I was finding told me what I needed to know. What was going to happen when they removed the affected area? Was I still going to be able to have sex? Would I still be desireable? How painful would it be? Then I found Gyn-Gals.
Gyn-Gals is a Yahoo Group for women who have had, or are suffering from a variety of gynecological conditions. Every woman on the list is affected in some way. There have a wealth of information on what to expect, after care, helpful products, everything you might need. Most importantly, they also provide understanding and support.
As I continue my own journey with HPV related VIN they are always there for me. I know that whether I need to have a pity party, or find out the latest treatments and possible cures, that I have a group of woment that will support me. So if you are dealing with a gynecological cancer or condition, or know someone who is, please keep them in mind. If you are dealing with cancer of any type you might want to check out Cancer Buddies Network.
You don’t have to go through it alone.