What are your endometriosis symptoms like? Nausea, painful sex, pelvic pain, sciatic nerve pain, dysmenorrhea, heavy flow for the first 4-5 days. Pain durning ovulation and after my cycles, headaches, migraines, memory problems, little sleep, anxiety, tender breasts, back pain.
What was your journey to diagnosis like? The day after I turned 12 years old, my first period started. Through the age of 12-15 I had deliberating period pains, I had to go to the washroom frequently that I missed al ot of learning from my classes in school. My mom and I were discussing about my deliberating pains, thought it was normal but felt way more than a normal period. So from age 12-15 I was taking Midol. It help with the pain but I had the “endo poops”. At 14 I was talking to the nurse from school. She suggested that I should try out birth control because it not only prevents pregnancy but she said it will help with reducing the cramps and the heavy flows. It helped tremendously. So I moved on in life, finished school and went to college. In the year of 2013 I told my mom by phone that I have been having the same pains and I need to see a specialist. My mom called for an appointment with her gynaecologist to see me. When we went to the appointment, the doctor and I were talking about what has been happening with me. Then she did the usual examinations and then she was testing my pain points. Afterwards she told me it seems that I have endometriosis because I had a lot of symptoms of it and told me that I would have to go for a laparoscopy however I would have to find a specialist who specialises in fertility problems. So I went back home and called a specialist’s office and told them what is happening with me. They told me that I have to wait 6 months to a year for him to see me. In the year of 2014, he had me try out a medication called Visanne and continuing with Tricyclen Lo. I was feeling okay with taking both for a while however in the spring of 2015 I had a severe migraine, and my period started. I called the doctor’s office for a follow up appointment. Went to the appointment. In 2015, he set me in for a laparoscopy and 2 months later I went back for a follow up about my surgery. He has confirmed that I have endometriosis, he found a lesion in my Pouch of Douglas.
What has your experience with treatment for endometriosis been? Heat therapy, yoga, meditation, cannabis, birth control with low estrogen, exercise, Tylenol or Advil for pain relief.
How does endometriosis affect your day-to-day life? I have lost relationships and jobs because people didn’t or don’t believe how deliberating and crippling this illness does to you, I was mistreated and disrespected a lot. I also developed fibromyalgia after my surgery and this is year 2 of me still learning to cope with that illness.
How does endometriosis affect your emotional well-being? Anxiety, depression, PTSD, lack of sleep.
How has endometriosis shaped turning points in your life up until now and looking toward the future? Managing my pain naturally with cannabis, peppermint tea, heat therapy, hot showers or baths. I take photos of the beautiful nature our earth provides, I draw, write, and colour. I have an amazing supportive boyfriend who was friends with me before we started a relationship. He was a kind, supportive friend at the time too.
How have you found hope and support in your endometriosis journey? I have my mom, sister, cousin, friends, and boyfriend who support me and understand. I have a new specialist and he is more informative, helpful and kind.
What do you think healthcare for endometriosis in Canada should look like? There needs to be more awareness about this. I have a hard time with going to the emergency room in pain waiting for a whole night to get seen and getting sent home in pain and tears because they cannot see anything wrong. There needs to be more awareness of any fertility problems and education in high schools. We learn about STDs why not fertility problems as well? And in that way, all of our future women can get the proper treatments and not wait forever or too late for those who wish to have a family or want to live a normal enough life. Hospital doctors need to really take patients who are sick with this seriously and not assume were junkies wanting a fix, we just want pain relief and comfort. Endometriosis is a deliberating disease it spreads like cancer and it gives you more than what you expected. Later on in life you can develop other issues such as fibromyalgia or gastritis, IBS, adenomyosis etc.