On July 4th 1985 I had my first period. I was almost 11 years old and remember vividly that day. My older sisters were "young ladies" already and I couldn't wait for my turn. A cousin from out of state was visiting us, and to celebrate the occasion, she made me a chocolate cake. Little did I know at the time that there was really no reason to celebrate.
That was the beginning of my life struggle. The vomiting, the fainting, the tons of pain killers I had to ingest every single month. I was in grade 5. In just a few months I started to see how my life was going to change. Being sent home from school, the whole class knowing the reason why I had to leave. By the time I was fifteen, I wanted a hysterectomy.
My periods were irregular, so I never knew exactly the day it would come. It was anywhere between 20 and 30 days. Unless there was a long weekend. My periods had a tendency to spoil my long weekends.
When I was 27 I moved to Canada, and about one year after that the pain started to last longer. It would hurt for about two weeks. That went on for one whole year while I had no medical coverage. It was at that time that I started to think that something was actually wrong with me. Our landlady, seeing my sad state, told me to go see a doctor, because that was not normal. I remember telling her that it was normal, it was my normal. I had been told so many times it was normal that I actually started believing that. But why could she go jogging during her period when I could barely walk to the bathroom? As soon as I got my OHIP card I went searching for a doctor.
It took longer than I expected but I was finally on my way to see a gynecologist. In a few weeks I would finally know what was wrong with my body and get that fixed. Instead, the specialist barely looked at me, didn't do an exam, wrote Metamucil on a plain piece of paper and handed that over to me. He said I had IBS. I remember walking back home in complete shock. I just couldn't believe what had just happened. I knew it was not IBS. It had to be related to my periods. That was the beginning of a lot of ER visits, doctor hunting, and a whole lot of pain. I call it the Dark Years. From 2003 to 2006, I was in bed in complete agony for half of the month. The other half I could manage with a lot of painkillers. I was lucky if I had one pain free day in a month.
Once, at the exam table during a physical, I broke down in tears, so tired and frustrated of being in constant pain for years. My then family doctor told me I should visit my family in Brazil because I was home sick. I wasn't home sick. I was sick. She knew I had endo and never referred me to a specialist. I walked out of her office to the reception and told a stunned secretary that she was not my doctor anymore. I fired her that day, and went searching for someone who would actually help me.
Toughen up. It's normal. Get used to it. You need to see a psychologist. I heard all that from people whom I expected to help me.
In 2005 I was diagnosed with endometriosis stage IV during my first laparoscopy. It took twenty years to get to that diagnosis. It wasn't in my head... it was in my bladder, my bowels and my ovaries.
On a second laparoscopy in 2008, I found out that both my tubes were blocked. I was very lucky to get pregnant exactly one year after starting IVF treatment. Pregnancy was perfect. Everything was great until I stopped breastfeeding to try another baby. The second miracle didn't happen, and with each passing month I could feel the pain creeping back on me. Time to see a specialist again. The wait was six months long... six months of pain. Finally I got to see the gynecologist, who prescribed me a pill to stop my periods. But that medication made me even more miserable, so I went back to change the pill. She told me I was too complicated... I couldn't believe the way she said that, with so much disdain. The only positive from seeing that doctor was that she referred me to a endometriosis specialist, which I was shocked to find out it was only a 15 minute drive from my house and no one had ever mentioned it or sent me there. I went to see Dr. Leyland, begging for a hysterectomy, because I thought that would be the end of all my problems. We ended up trying some different medications, as I was too young to have everything removed, and now I have the pain under control. At that clinic I met Dr. Arendas, who told me about pelvic physiotherapy, which I had never heard before. That was fundamental in the process of minimizing my pain. I'm extremely grateful to her for the care and attention she gave me.
I hope the worst if this disease is already behind me now. Having a very supportive husband, who has put up with a lot of bad stuff while always holding my hand, and finding doctors who actually listened to me made all the difference on this journey.