What are your endometriosis symptoms like? The symptoms I experience with endo are: severe pelvic pain, feeling like someone had thrown acid on the inside of my abdomen, pain going down into my groin areas then through my legs leaving it hard to walk, severe nausea, pain rash on my face, feeling like someone is carving out my insides, burning, vomiting and sometimes unable to speak when the pain is at its top peak (having to go to the hospital for pain control when that happens). A lot of these symptoms I deal with daily which leaves me bedridden often and having to use a walker to get around my house at age 28.

What was your journey to diagnosis like? From my first period at age 12, I always felt my periods were very bad. Having not known about endometriosis I would just deal with it monthly. Like most girls, the talk of periods would come up and I always thought, “They say theirs is bad but they can go about the day normal.” I would often miss school while on my period because I would be in so much pain it would take me out for a few days. I remember one day I started my period and I ended up on the bathroom floor, with a hot bath running trying to get into it to get some pain relief. I could not physically get up off the floor and I went to scream to my mom to come help me but I was in so much pain nothing came out of my mouth. I had my routine of getting in a bath that was so hot that my legs would be blood red getting out. I would wrap myself in a towel (because putting anything around my waist was too painful) and get myself into bed, putting 3-4 blankets on me to trap in the heat to get some relief. When I was just about to graduate, I said to my doctor, “I cannot go to job interviews and say that I want to work but for 4-6 days out of each month I will be unable to come in because of my period.” Finally, my doctor sent me to a gynaecologist. My appointment with the gynaecologist came and after asking me a few questions he said, “I would not be surprised if you have endometriosis.” He booked me in for surgery before we left the appointment and about 5 months later I had my first laparoscopic surgery. I remember waking up from surgery and, although I was groggy, I remember my gynaecologist saying to me clear as day, “You were completely filled with endometriosis, one of the worst cases I have seen, but you should start to feel better now.” I started to cry and just thanked him so much as I no longer felt “crazy”, and finally after 8 years had a diagnosis. It could no longer be blamed on anxiety or that I was just being “dramatic” but little did I know I had just begun my fight with this disease.

What was your experience with treatment for endometriosis been? At first I was put on birth control which did nothing at all to help. When I finally had my laparoscopic surgery done and the Mirena IUD put in my periods were like night and day. I had little to no pain for almost 3 years. In my experience so far laparoscopic surgeries are the best form of pain control but it always grows back. Excision would be the best way to go but you need an excision specialist and there is only 1 of them in Canada with a 3 year wait list. After about 3 years my symptoms started to come back and they came back hard. I was then put on Lupron at age 23 which puts your body into a medically-induced menopause. I only did 1 round of that because the side effects were so horrible it was not worth continuing. I was then put on a few more medications like Cyclomen and such but none of them ever did anything for me. At age 24 I ended up getting a hysterectomy leaving 1 ovary so I would not go into Menopause at a young age. The hysterectomy helped for a few months but the pain came back again. I do not regret my hysterectomy (I knew going into it it was not a cure, but some women say it had saved their lives so it was worth the risk for me) not having to deal with an actual period every month is good. I am currently taking Orilissa which has helped a bit but it is not doing anything major for me and the cost of it is very high. The possible side effects often freak me out but I try and stay focused on what it is doing for me. It is unfortunate because around here there are not many options and we have to travel for more advanced care. Many of these drugs have given me bad side effects and you constantly feel like your on a rollercoaster. I have had some nerve blocks done that have helped a bit as well which has been great.

How does endometriosis affect your day-to-day life? Endometriosis has a huge impact on my daily life. I am unable to work out of the home, my employer was great to me when my endo started to impact my everyday life but eventually I had a bad flare up at work (I worked at a hospital so when it happened the nurses and doctors were so great to me until my husband came to pick me up) but I ended up in the bathroom in so much pain I could not stand up right and they came looking for me and found me in there. After that episode at work I was never able to go back. My manager was very understanding but I had to call off so much due to endometriosis weekly that after the episode at work I was unable to go back. I also started running on my treadmill a few months before my endo started to affect my daily life and it was so great mentally and physically for me, but eventually I had to stop that as well. As far as my social life goes my friends have been very understanding but I constantly have to cancel on them. Even for me to go out to diner at times is too much because if I am in too much pain I cannot sit upright in a chair. My family has also been very understanding but there are many times I cannot make family gatherings and holidays because I am in too much pain and if I do make it I am often sitting in the corner with a heating pad on me. It can be challenging because for me and I am sure for many people with endo you have to pick your battles. I have to say, “Okay is it worth the pain to do this today or go to this event?” You are constantly having to think ahead and think how much pain it could put you in.

How does endometriosis affect your emotional well-being? Endometriosis affects my emotions on a daily basis. I tend to go through spurts of different emotions every few weeks. Some days I am in total warrior mode where you just keep telling yourself, “I can do this, things could always be worse,” and other days I cannot believe this is my life. I cannot believe at age 24 I had to go off work, at age 25 I had a hysterectomy, at age 27 and now at age 28 I have to use a walker and a cane somedays just to get to the bathroom from my bed. You are constantly on a rollercoaster of emotions with this disease. I often feel like a bad wife or useless because I could not cook supper or clean the house. I am so fortunate to have such an understanding husband who constantly reassures me that I am none of those things but it’s hard to believe sometimes. I get myself up out of bed daily no matter how much pain I am in, get washed, get dressed (out of pjs and into comfy clothing) and act as if I am going somewhere because if not I feel like I will go into a deep depression. There is many sleepless nights because the pain is just too bad which not getting any sleep just makes everything that much worse. I suffer from bad anxiety especially having to take narcotics for pain I am constantly anxious about becoming addicted but if I did not take them I would have to go to the hospital daily.

How has endometriosis shaped turning points in your life up until now and looking toward the future? Because I decided to have a hysterectomy I am unable to have children. This is something that effects me and my husband daily. We chose to do the hysterectomy because it was worth the risk for possibly being able to give me a better quality of life (it did not unfortunately, but it was worth a shot in our eyes). Even IF I did not do the hysterectomy to see if it would help, then regardless we wouldn’t be able to have children because we both agreed it would be too much on my husband. I am unable to take care of myself most days let alone a child. Now, in saying that, I would never judge anyone who still decides to have children and deal with endo. This was just our own choice and decision.

How have you found hope and support in your endometriosis journey? Dealing with endometriosis can be unbearable and having a great support system and people who believe your pain is crucial. There are so many women who do not have a good support system and that breaks my heart. I am so fortunate to have an amazing husband, family, friends and doctors behind me. Of course I have had many doctors that had just seen me as “crazy” or “drug seeking” but I have been very lucky the past few years to be followed by a great pain doctor that is willing to try multiple treatments and help me with my pain which I am so grateful for. I also now I have great GP who is very supportive and understanding which makes the world of a difference. I have found great support through social media. It is so great to talk to other endo sufferers who understand what you are going through. Being able to reach out to them when you are having a rough day is some of the best medicine.

What do you think healthcare for endometriosis in Canada should look like? Healthcare for endo in Canada should first of all be more efficient. The wait times for surgeries, seeing specialist, physiotherapy and such puts such a delay in treatment and leaves the endo to keep growing inside of you and causing more issues. I wish that there were more excision specialists in Canada so that more women could get better care for this disease. I hope that with all the awareness that is being brought to this disease lately, GPs, emergency rooms, gynaecologists and such become more aware of endometriosis and what it is so that when a patient comes to them with these issues they can get the ball rolling on treatment (that is available), so that we are not seen as “drug seekers” when having to go to the emergency room for pain control, and so that when young girls start to show signs of endo they can be offered treatment and referred to the right doctors. The delay in diagnosis is terrible and if doctors can pick up on it quicker I believe we would not have to suffer as much as we do. I could go on and on about what our healthcare system needs to do for us endo sufferers but I believe those are some of the main points and if we could start with them that would be great.

What do you think it is important for people to know about the experience of having endometriosis in Canada? I wish I could say having to deal with endometriosis with our healthcare system is a walk in the park but it is the total opposite. We need more awareness brought to this matter. 1 in 10 women suffer with this disease but yet there is so much wrong when it comes to our healthcare system when dealing with endometriosis. We are often seen as “drug seekers” or “making up our pain” because endo often does not show up on diagnostic imaging. We need more specialists in Canada so that we can get better care to actually treat the problem. I myself often feel helpless dealing with this disease in Canada because our resources are so limited. I constantly speak about endo and raise awareness so that generations to come do not have to deal with what we deal with. I was looking into going to the states for treatment before Covid-19 hit because I feel that I am at a dead end as far as treatment goes. I hope to travel and get better care when Covid settles but I wish I could stay home to have the treatment I desperately need.