What are your endometriosis symptoms like?
Having Endometriosis is just as serious as any other health issue. I’ve had three miscarriages and two successful all because of this disease. I need to learn how to take control of my mind body and spirit. Living with this, is sometimes mentally draining and takes control of my life. There needs to be more support groups for people with Endometriosis.
What was your journey to diagnosis like?
I was first diagnosed after my first miscarriage, I’ve been through two laparoscopy. Within the last two years, I went for an ultra sound and they found fibroids again in my cervix. I just finished my second ultra sound for further investigation and scared to hear any news of growth. I wish there was more support for this.
What has your experience with treatment for endometriosis been?
I’ve been through two laparoscopy for treatment already, and currently in the process of looking for more options. The one doctor told me, it isn’t really worth going for a third laparoscopy and suggested I go for a hysterectomy, after reading and doing a bit of research on my own, I refuse to go for this.
How does endometriosis affect your day-to-day life?
Endometriosis impacts my everyday living, I have to suffer the pain, I am still figuring out and learning about the long term impacts. I sometimes think this is a silent killer and robs a woman of our life, inflammation, the sever pain during sex, pain management in general and the lack of circulation. I refuse to date due to this. It is hard to explain to a male about blood and sex. I am doing my best to exercise and be healthy but often find lack of motivation.
How does endometriosis affect your emotional well-being?
Living with endometriosis and my mental heath is challenging. I was diagnosed with major depression, I hardly take anything for pain management. I refuse to date or have any sexual interactions because of this. Men, sex and blood do not mix. I feel living with this also impacts my nerves, I wish there was free massages for us.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
I am 45 years old, I feel like I’ve been going through peri-menopause, I have sweaty sleeps. I have such a heavy flow, I sometimes wake upset being reminded of how this is blood disease and inflammation. I am slowly doing my best to retrain my mind to take control of my life. I want my life back. I work full time, I just dread my menstrual cycles all because I have a heavy flow and blood clots, It scares me sometimes.
How have you found hope and support in your endometriosis journey?
I have limited support at home. I am a single mom, I go for counselling as much as I can, some months are better. During COVID this really impacted my life. No one understands what it is like to live with this disease.
What do you think healthcare for endometriosis in Canada should look like?
Federal or provincial, we need more medical support for this disease. Our province needs to develop a pain management program if there isn’t one in place. This is a chronic disease, why travel over to another country for a $20,000 surgery when the medical system can implement it here. Make medical access accessible for everyone and not just for the people who can afford to travel out of Canada.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
Endometriosis is a chronic disease and we need more awareness and more education for all the medial field. Why wait for 20 more scientific research projects to prove we need help! We as women, are important and we need support. We need a Endo Act board and/or Endo chapter for every province and more advocacy.