What was the beginning of your endometriosis journey like before you knew what was happening?

I was 12 year old about to start 8th grade when I first got my period just before summer ended in August. By the end of that September I was in a lot of pain. I ended up in the hospital by the time October hit, and ended up becoming sick, and was in and out of the hospital until December when I underwent an emergency surgery that ended up removing my appendix, and I was diagnosed with a grumbling appendix. The pain before the surgery and after was blamed on the grumbling appendix, and the recovery. I was already experiencing heavy periods, soaking through multiple pads during my school day.

When were you diagnosed, and what was your journey to getting diagnosed like?

I was not diagnosed until I was 29 years old. By the time I was in 10th grade I was missing 1-2 weeks every month due to the pain and blood loss. My family doctor told me that this was all normal and a part of being a woman. By the 11th grade, missing those 1-2 weeks each month really started to affect my life. I wouldn’t be able to eat some days, would spend time in the bathroom unable to move, throwing up. There would be times I would need to leave school due to the pain and blood loss. After dealing with this for so long, my family doctor told my mom I was doing this for attention and it was all in my head. She began to believe them. I ended up on birth control in 11th grade in hopes of regulating and decreasing my pain. I was told again this is how women experience their periods, and I had a low pain tolerance. I went on 4-5 different birth control medications before I found one that worked, and I would only get my period 4 times a year. For a few years this was great. I was able to live a some what normal life. In my early 20’s I was awoken in the middle of the night from the pain. It went away quickly, so I didn’t think much of this. The next month it came back, and it was worse. I couldn’t move. I ended up in the ER, and was brushed aside and given an ultrasound a few days later. They found fluid in my abdomen and said I must have had a cyst rupture. Over the course of the next 6 months I ended up in the ER 4 times due to the pain, still taking birth control. I was accused of being drug addicted during those 4 ER vists. I kept getting brushed aside and I started thinking it was in my head, and this pain must be normal. Until one ER doctor asked me if I had ever heard of Endometriosis, which I hadn’t. She told me to go home and do some research and I did. I met all the criteria. I asked my family doctor to refer me to someone who would listen, and she tried. She sent the referral to an IVF specialist. He told me at first appointment it could be Endo, it could be cancer and to come back a few weeks later for more testing. I returned, and he prescribed medication and told me to return 6 months later and see if had worked. I told him no, I needed someone to do surgery to confirm Endo, and he declined. I went back 6 months later, and I demanded that he found a surgeon. Less then a week later I was in a surgeons office, explaining my symptoms. He got me in for surgery a few days later. When I woke up, I knew I had only been in surgery for 30 minutes. I knew it was one of two things, they didn’t find any Endo, or they did and it was bad. In the recovery room, my mom, husband and best friend were there when the surgeon came in. He said in his 30 years of operating, he had never seen a case like mine, and I had the worst case of Endometriosis he had ever seen. I was diagnosed with Stage 4 DIE Endo. A few days later and my check up I was told just how severe it was. How I could lose my kidney in a few years, and a conversation about a kidney transplant took place. He told me that he did not have the skills to operate on me, and if he had, he would have damaged my organs. I was referred to a specialist in Toronto. I waited 6 years (covid and having children). My excision surgery took 9 hours. I lost part of my sigmoid colon, my renal system failed, and I had a stent placed in my right kidney, ovarian suspension among other things during my surgery. To top it off, 30 hours after surgery I went into anaphylaxis and was rushed back to the hospital. I had a 5 person team work on me, and they saved my life. I was unable to take pain medications afterwards and recovered without taking anything. 2 years later, no one knows why, and I must carry EPI-Pens on me at all times now.

What did it feel like to finally have a name for what you were experiencing?

I felt sad, angry, disgusted, happy but calm. I fought with the Canadian medical system for so long. No one listened to me, no one believed me. I knew something was wrong, and it took 17 years before I got a diagnosis.

How does endometriosis show up in your body and daily life?

Endo pain is the worst thing that I deal with. I deal with intense cramping, in my uterus, and bowels. My bladder cant drain properly, and during my period, I would have a lot of right sided back pain due to this. I vomit from the pain. I can be having a conversation with someone and it can hit out of no where. Its breathtaking.

How would you describe the pain or physical challenges of endometriosis?

I have luckily had two children and I would take labour over dealing with Endometriosis any day. There are days when my husband has to pick me up off the floor.

Do you have “good days,” and if so, what do they look like?

I do have good days. They are few and far between when I have my period. Maybe 5-7 days a month. I would try and plan things with friends, I would excel at work, and then it would all start again. Sleeping for hours, unable to eat, live, be around my kids and missing out on portions of their lives.

How has endometriosis affected your education, work, routines, or ability to make plans?

I missed a lot of school. My grades dropped and I was accused of being lazy. I didn’t graduate college. I have had multiple conversations with management from my current and past jobs about how this is affecting me and how I’m able to do my job consistently.

Has endometriosis had an impact on your finances or access to care?

I live in Canada. The wait times are so long to get into see a specialist, that I have considered going out of country for care.

What has your experience been like with doctors, specialists, and navigating the healthcare system?

Dealing with this disease had opened my eyes to how much the medical system hates women. Why is it that we have to continue to push for answers for our bodies. I was accused of being a drug addict because I was dealing with such pain. Everyone treats me like I’m making up this disease, even after I have had 3 surgeries, one being 9 hours long.

What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?

I have had 3 surgeries. One being 9 hours long, which is twice as long as a standard heart transplant. I have been on so many medications, but I have found one that is “working”. But I shouldn’t have to deal with medically induced menopause and the side effects that comes with that.

What has it been like to live with a condition that often isn’t visible to others?

Its hard. I know if they were in the same situation, their daughter, niece, friend, they would do everything in their power to get answers. But when I and so many women with Endometriosis share their stories, we are told it cant be that bad, you’re being dramatic and need to stop doing this for attention.

Have there been times when you felt dismissed or not believed about what you were going through?

All the time. Even after my 9 hour surgery. I ended up back in the ER and as soon as I mentioned Stage 4 DIE Endo, the ER intake nurse rolled his eyes. I had to politely put him in place and told him he was more then welcome to read over my 35 page operative report.

What has the emotional or mental side of living with endometriosis been like for you?

My mental health is great some days, and I hate this disease more then anything I ever have. I come up with plans on how we can maybe support women. But there are the days that I sit and cry and am so angry that it took 17 years of fighting for answers.

How has endometriosis affected your relationship with your body, identity, or sense of self over time?

Its extremely difficult. I bloat so easily and am often asked how far along I am in pregnancy. I’ve gained a lot of weight and that’s very difficult to look at and not have the energy to workout often.

How has endometriosis affected your family relationships, friendships, or dating life?

I’ve lost friends, and stopped dating for along time due to this condition. I couldn’t keep plans or make plans for certain times, and people started to view me as unreliable, which I understand. But its hard to know that if I was in that position with a friend dealing with an invisible chronic illness, I wouldn’t end the relationship.

Has endometriosis had an impact on intimacy or your sexual life?

I stopped dating for almost 7 years because the pain was so extreme and it was embarrassing trying to be intimate with this condition.

If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?

When I was first diagnosed, I was told I would have less then 5% chance of ever carrying a pregnancy to full term. I was able to carry both my pregnancies, one was pre-term labour at 32 weeks. I gave birth at 36 weeks. My second pregnancy was hard. I was pregnant 5 months postpartum, which was advised by my medical team. They told me it would take a while to get pregnant.

Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?

I have found that speaking with other women who deal with Endometriosis the most therapeutic thing I can do. Knowing that other women are dealing with what I do, helps me know I’m not alone.

Do you feel supported in your journey? Who or what has helped you most?

I do now. Before my diagnosis , I felt very much alone. I had people, but I know they were tired of supporting me. Now, after 3 surgeries, one being 9 hours long, and openly speaking about this condition, I have a huge support system. Family, friends(new and old) and my coworkers. Without these three groups I would be very much alone.

Have you connected with others who have endometriosis, either online or in person? What has that experience been like?

I used to run an Endo Chapter in my city, pre-covid. It was so wonderful meeting up with people who deal with this disease. Seeing them in person, speaking about out journey, is healing. I want to set it up again.

How has your relationship with endometriosis changed over time?

Its changed a lot. My mindset is currently about how can we fight for more education in the medical world. How can we support women who have recently been diagnosed and are sent home to basically figure out everything by themself.

More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?

I think there is not enough training in medical school regarding this condition. It is brushed aside as a “period” only disease, and they is due to the lack of education. If there were more doctors and nurses who were trained, and medically aware of the consequences in a delay of diagnosis, maybe they would take it more serious.

How do you feel endometriosis is represented in society or the media? What would you like to see change?

Its starting to be spoken about more, but not as much as it needs to. There needs to be more done, and spoken about, especially in Canada.

What would you like more people to understand about endometriosis?

I would like people to understand this is not a “period” disease. It is a whole body disease and the lesions can and have been found throughout the whole body. I almost lost my right kidney and needed a permanent nephrostomy bag. That is not a disease caused be a period. Also, MEN can get Endometriosis.

When you think about the future, what fears, concerns, or hopes do you have?

I think the future is looking up for women with Endometriosis. The more exposure from social media and even mainstream TV has been wonderful and I think we can move forward maybe towards a cure, or better medication for us.