To take her mind of her endometriosis diagnosis, Angela Wice signed up with MedHelp and soon became the community leader in MedHelp's Endometriosis Community, answering users’ questions, offering advice and providing comfort to those with the disease. Here’s her story.
Name: Angela Wice
City: Mississauga in Ontario, Canada
MedHelp member name: Ticked
When were you first diagnosed? June 2007
How did you find MedHelp?
In 2006 a 10cm complex mass was found on my left ovary. I went online to see if I could get some answers. The first place I came to was MedHelp’s Ovarian Cancer Forum because I was terrified that it was cancer.
What has MedHelp meant to you?
MedHelp helped me meet some amazing women. They guided me through the entire process of what I needed to do and comforted me by telling me that 99.9 percent of cysts are benign.
We’ve built our own little private group on Facebook group (8 years strong!) called the BBBC (Bulge Battling Battalion Cysters). We have new women joining all the time — many who are battling cancer and other physical ailments every day. We’ve lost some very special ladies through the years, but we have a bond that can't be broken.
What’s your advice to someone who’s newly diagnosed?
The best advice I can give someone is that they need to find a top endometriosis specialist to excise (cut out) the endo out from the root. There is only a handful of surgeons like this worldwide for the nearly 200 million women battling this disease. Many regular ob/gyns are uniformed about endometriosis and still go by the Sampson Theory, which is around 100 years old. There is new information out there; you need to be your own advocate.
Tell us more about your activism towards this cause. What are your goals?
About a year ago I decided to start over and do a new blog. I was also starting to get really active on Twitter after I found out that the support there was my lifeline at anytime of the day. Whenever I signed on to Twitter, someone would be there to support me. Once I got my blog started, I knew I wanted to make it simple, factual, and easy to navigate through, but I also wanted there to be that something extra that would really help these women. So I started "The Faces of Endo," a wall on my blog dedicated to all the women who are suffering from the disease (see image below). I didn't realize how big it would get — I had women from all over the world wanting to be on it to raise awareness. So many women loved this idea because they finally didn't feel alone. That was my goal. I suffered for 14 years alone; I was in the dark and became very depressed not knowing what was going on. Even when I was finally diagnosed, I still felt alone. It is my goal was never to let anyone feel alone during this battle.
One day I would like to work within the endometriosis community raising awareness and getting paid for it, but for now, most groups are only volunteer so at the moment I just continue to write my book about my journey and hopefully help others along the way.
Is there anything else you'd like to share?
I started to have bad period cramps at the age of 13 and I was told it was normal. By the age of 15, I had bad rectal pain and I was told it was IBS. I was diagnosed with multiple co-morbid diseases before an actual endometriosis diagnosis, which was even more frustrating because no one could really tell me why I was in so much pain and feeling so tired. I feel that many women keep silent because they are told that "it’s just cramps" as well as people still feel that the subject of gynecological disorders is taboo.
The community on social media has been so unreal this year. It was never like this before. We are building a united front to take on the world so that we can be heard. The first annual Million Women March For Endometriosis was a stepping-stone, and we were loud, and we will only get louder. We need to be taken seriously and let people know that the pain is real — we need more excision surgeons, more tools, more awareness and more understanding for those who suffer. We need doctors to educate themselves about new advances in endometriosis treatment instead of going with something from 100 years ago. It makes no sense why this is still going on.
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