What are your endometriosis symptoms like? My symptoms are deliberating painful, annoying, frustrating. My symptoms are: Nausea, fatigue painful ovulation, painful periods, heavy flow, headaches, spotting, bloating, brain fog, anxiety, sciatic pain.
What was your journey to diagnosis like? I am 31 years old today. It took me 13 years of my life (12-24) years old to get a proper diagnosis. I had fought for my own health to be take seriously but I had to suffer in my teen years and deal with it. When I was 23 I went to see a specialist with my mother, the doctor examined me and explained to me it could be endometriosis because I had all the symptoms that leads to it. So after the appointment, I soon had a specialist closer to home to see about hormone treatment options and, if they didn’t work, then it would become a possible surgery. So unfortunately the Visanne didn’t help, so the specialist set up a surgery for me. So after my surgery and recovery, we had a follow up appointment. The specialist told me that he removed a lesion in my Pouch of Douglas and the biopsy report turned out positive for endometriosis. My heart sank, I cried and felt so small and did something wrong. I was angry.
What has your experience with treatment for endometriosis been? My specialist had me try out the Visanne before my laparoscopy. It did work for the first 3 months however I had my period on the 4th month. so after my surgery I was on Alesse to try out. It helped me a lot however I gained a lot of weight so I stopped taking them. So I had to make another appointment with my gyno/specialist. He had me try out the Mirena IUD however I had issues and the procedure which was horrifying! I remember taking the extra strength Tylenol and Advil before my appointment as was recommended by my specialist. However they didn’t work, while he was inserting the IUD he was telling me what was happening along with the nurse beside me holding my hand and comforting me as possible, he was telling me this will be a pinch, relax your breathing and body, don’t tense up, the room was freezing cold. I was soo nauseous, pale as milk, my blood pressure was high, sweating and shaking while trying to lay still while it was happening it was torture and I have flashbacks from it. I had to take another Advil and in the 30 minutes after I wasn’t in horrendous pain, I thought I had to go to the hospital after the procedure. That has to change. I know women who had kids told me they had no issues, so perhaps our gynos needs to think of a better way to insert IUDs in the future for women who don’t have children yet. We took a chance on Tricyclen-Lo, been taking that for 3 years l have no issues with it except I am suffering with painful periods still. I was on the Alesse 2 months ago just to see if my body would be okay while on it, unfortunately I had horrible acne (masks don’t help and I am still healing from the acne) . So I am back on the Tricyclen. I have been doing home healing remedies for when my horrible periods arrive.
How does endometriosis affect your day-to-day life? Somedays are good, but when I have bad days I’m on the couch in a blanket hating the world. I have lost jobs, relationships, and family because some claim that I am not trying to push myself through the pain, or I work too slow, or I am lazy because I couldn’t clean the house for a few days, I’m not good at sex, I will have a hard time with a baby. So I just tell them off or ignore it because they don’t understand. I walk a lot, I also love hiking, I also ride a bicycle in the spring and summer. But that’s if I’m having a good day and I have fibromyalgia too so I have to be careful with what I do.
How does endometriosis affect your emotional well-being? Endometriosis has impacted in my life big time. I get jealous and upset when other women brag about their newborns to the extreme, and it makes me angry when they ask me, “when are you planning to have one?” Honesty I don’t know anymore, it could be too late by the time I finally settle down in a house. So I may as well think about adopting. It makes me feel more anxious when I have appointments or when I get my essential meds or groceries. If I have plans the next day, it takes me a long time to get ready for the day and people complain about what’s taking me so long – that really makes me angry after I have explained it to them numerous times. Or when I cancel plans I get in trouble because I have a hard time moving around. My hubby now is very understanding about intimacy, and we do alternative therapy/positions to make me comfortable with our time together. But in the past I had painful sex all the time. I sometimes have either enough sleep or none, I cannot nap during the day because I feel like absolute garbage afterwards. So I drink orange pekoe tea and it helps, it’s also easier on my stomach. Move on with what the day brings or cry on my bed in pain.
How has endometriosis shaped turning points in your life up until now and looking toward the future? I had to do my own research about this disease and it has helped me a lot. I have been working on natural remedies to cope with the flare ups or my periods. They sometimes don’t work, or cannabis which works enough for me to do daily things. Sometimes I take Tylenol and Advil even though they don’t work for long because they’re just a temporary bandaid to stop the pains. I am working on my overall health to have my body become baby-ready to have a healthy pregnancy. While that’s happening I am looking into buying a house with my amazing supportive hubby.
How have you found hope and support in your endometriosis journey? From the beginning of this traumatic experience I had to self support. But now I have more from my mom, sister, my boyfriend, and a few friends who truly understands me. My new specialist is also a great support because he gave me more optional treatments to try at home to manage my pains and to live a normal-ish life.
What do you think healthcare for endometriosis in Canada should look like? I think the health care system for endometriosis needs to be more common in smaller towns or cities, as in more specialists need to help more patients than just one or 2 specialists that are available and you have to wait for 6 months to a year to see. I live 5 hours from my new doctor and it’s exhausting to travel to and from the appointment in one day. The doctors in the hospitals also need to treat any woman who has this unbearable condition with dignity and respect instead of being assumed their junkies. Or be told “It’s just your period having a bad flare up, there’s no way you have endometriosis, you’re too young. Take a Advil and Tylenol and you’ll be fine. Go see a counsellor to help with your mental health issues” for example. It’s not in our heads! It’s debilitating and cripples you. It’s not just a normal period. I also believe that children in grades 7-8 in the sexual health programs should not only learn about puberty, they should also add about fertility problems that girls may or may not have to face when their bodies change over time. Their parents can educate them if they’re already going through the same issue or have gone through fertility problems (hysterectomy) and help their daughters cope with body changes and help them out professionally with a specialist. In high schools they should learn about safe sex, and also fertility problems that women have now in this day of age. I have suffered from endometriosis since I was 12 years old I’ll be turning 32 soon. It was very difficult to be a kid. I was depressed, felt alone, I use to cut myself to distract the “normal period pains”. Because I felt hopeless and felt like I was dying, and that no one believed me. Please help our future women to get seriously taken care of and not neglect them and thinking it’s there only mentally – it’s 100% there physically too. I also believe that pelvic floor therapy should be covered everywhere because I live in a town where there’s only one place that has pelvic floor therapy however I have to pay every appointment and I cannot afford it and I already spend enough on medications, period supplies, underwear and other basic necessities for the house. I know how costly special appointments are and I don’t think this is fair.
What do you think it is important for people to know about the experience of having endometriosis in Canada?It needs to be heard more in smaller communities, cities, and towns. It’s exhausting to travel outside of our communities to see a specialist, wait for 4 hours, and see the doctor for about 30 minutes to an hour about options and then have to wait for a while to be seen again if anything else goes wrong. I hope when the government hears our voices or read our stories about how debilitating this disease is, then hopefully the Ministry of Health can actually take more action, and have more programs for free funded by the Ministry of Health or covered through disability, like pelvic floor therapy, yoga classes, counselling. Please help us!