What are your endometriosis symptoms like? I could only describe it as a tummy ache when I was younger. I have been menstruating since I was 11 and had pain and cramps that would double me over at my desk and leave me sweating, but I was told that was normal, or that I had to push through it. I also had very heavy periods from a very young age that contained a lot of clots.
What was your journey to diagnosis like? I moved out of my family home at 18, so my parents and family doc were the ones I told of being in pain or of heavy periods as a teenager. They didn’t believe me or brushed it off each month, so when I moved out I needed a new family doc and just never mentioned it to him because I had been told for so long that I was lying. I went on to have 4 children, so it didn’t affect my fertility, but it did cause very heavy periods after each child, and I don’t known if it is linked to endo, but I got my period again 6 weeks postpartum and I described it as crotch carnage cause I must have killed something for there to be that much blood. My youngest child is 5 now, and I am 1 year post hysterectomy that was needing to be done at age 37 because my periods were so heavy. I would lose so much and so quickly that I had to change tampons or period cups once every hour for the first 24 up to 38 hours for my cycle. I would wake up in a panic during those nights fearing I had ruined my bed again, and needed to change the sheets at the bare minimum. I didn’t sleep well to say the least, and the anxiety leading up to my period was awful because it made so much more work for myself, and I’m chasing after 4 very busy boys. The obstetrician I saw was so wonderful because she was the first one who believed me, and proceeded with the surgery based on a diagnosis of fibroids on my ultrasound. I waited for more than 1 year to get the call for surgery, but it wasn’t until I was in recovery in the hospital that I was told I had endo, and it was only mentioned in passing that the surgeon had found endometriosis. After I did lots of research on endo and how it can affect others, I feel like there are so many things about my life that make so much sense! I was finally validated! The relationship with my parents has deteriorated to estrangement because they see me as a liar and have since I was 11, and it has changed how I respond to my anger and have had to be more gentle with myself regarding when I’m in pain. I have self medicated for years with Marijuana and have found that works best for me, but it was illegal for so long that I had to live a different life than others, and one that had a lot of judgements made about who I am as a person and as a mother. I’ve only known of this diagnosis for the last year, and so much has changed for me since my hysterectomy. There is still pain in my abdomen, and I hug my heating bag a lot too, but I know what it is and I know what I need to do and to just put my feet up.
What has your experience with treatment for endometriosis been? I had to push for a hysterectomy based on heavy bleeding and they did an ultrasound for fibroids when I was 36. So I haven’t had treatment specific for endometriosis since I found out I have it. My concerns would be that the medical professionals I’ve seen until surgery didn’t even try to consider there might be an underlying concern. They failed to listen when I was a teenager trying to cope with heavy periods and a lot of pain, during menstruation and during ovulation, and I have a pretty jaded opinion of medical doctors now because of it, I feel like there is always this ‘I don’t believe you’ premise that I need to fight against when I am honest about my health. Most doctors don’t want to hear how bad the bleeding is, or the anxiety it can create having to work my life around periods.
How does endometriosis affect your day-to-day life? I could not leave my house for up to 3 days with my period after having children because the bleeding was so heavy. I have also had to explain my anger and short fuse to my children and teach them about how to retrain your brain. It is a slow process. There is still pain each month and I still get angry when I really just need to sit down and hug a heating bag. But my kids are recognizing when that is happening now, and my husband has been very understanding, even before my diagnosis, of my periods and pain. Neither one of us knew I had this condition, or that trying to push through pain can make you so angry. I try to stay active, but sometimes exercise can cause more pain than the fitness is worth so I have kept my style to walking and working around house, but we have a very busy household so I’m never really not busy! My family growing up never believed me, and always thought I was just trying to get out of going to school or doing chores or working. I was never allowed to ask for more than an analgesic every so often because they would say I was abusing it. So I just learned to keep quiet and try my best to manage the heavy bleeding and pain. As an 11 year old girl I wasn’t very good at keeping pants clean, so I was yelled at for ruining them and told I needed to buy my own feminine supplies and clothing when I was 15 and had my own job, among other things, but those were my responsibility because I kept ruining the ones they bought. I went to planned parenthood for birth control during high-school and didn’t tell my parents because they would think it was because I was sexually active, but it was to slow my periods down. I didn’t even tell the planned parenthood people about the period problems because it was easier to say it was for birth control, at least they believed that. I didn’t start being sexually active until I was 19, but started the pill when I was 15 under the premise of being sexually active. I have been a stay at home mom for 13 years, so my job outside of the home wasn’t impacted in the recent past, but cramps and pain would keep me home a few times from working.
How does endometriosis affect your emotional well-being? I would panic about my periods ruining things like clothing and bedding and mattresses themselves. I would not sleep well for fear of this, and if I slept through the night it was always such terrible words to myself about how lazy I was or how I should have known this would happen. It affected my relationship with my husband because even if we wanted to I couldn’t because the bleeding was so heavy or I was just not interested at all. It caused tension when I didn’t know I was in pain and could create snags in a vacation or any outing that needed a plan.
How has endometriosis shaped turning points in your life up until now and looking toward the future? I didn’t know I had endometriosis until 1 year ago but I couldn’t think about returning to the work force or going to school until I could sort out each month and needing at least 2 days, if not 3, at home. My family planning wasn’t affected because I didn’t know, and my fertility was never affected, but the heavy bleeding caused me to be absent during their childhoods that I could have been present for.
How have you found hope and support in your endometriosis journey? When I was finally given the news I had endometriosis on my uterus when the surgeon had removed it, I had to wrap my head around it, but there were so many revelations from that diagnosis that have made so many things in my life make sense. Why I always had pain and cramps, and how it can affect your flow. My obstetrician was on my side about my quality of life and if that was being affected by my periods then something needed to be done. I was the one who asked for the hysterectomy instead of ablation or other options first, because I needed the bleeding to be managed, and the recovery from each procedure would have required the same amount of time. I could only pick one and have 1 recovery time because of my family and responsibilities here, and my obstetrician supported this choice. My family did great helping me recover and have since understood more about this condition because I have soaked up a lot of info on it and shared with them. I am still estranged from my parents and don’t see that getting better even with this knowledge.
What do you think healthcare for endometriosis in Canada should look like? Listen to girls about period pain!! It’s not just drug seeking, or avoiding school. It’s not in our heads or something we are making up and families need to be more understanding of women needing special treatment during their periods. Women need to be validated and not made to feel vile and disgusting for bleeding on things or perhaps ruining them with period blood. Better feminine supplies that actually work, and provide them at no cost. These are not an option, as far as I know, and must be used. So why do they cost so much! Doctors, who have been men in my experience, don’t know what to do for a girl in pain, or even how to ask about it in a non derogatory way. Teach girls about endo when they start learning about sex education. Teach parents not to walk away when girls come to them about period pain. Have access available in doctors offices to professionals who know what they are talking about.
What do you think it is important for people to know about the experience of having endometriosis in Canada? The only way to build this system is to educate more people about it. Women’s health really needs to be better addressed in the entire health care system. Women need to be able to advance in this field, and a lot of times the best educated people are the ones managing it every month, not the ones telling us how to treat it. More needs to offered for learning about endometriosis and men need to butt out when it comes to what they think we need to do around our periods and the pain we must be lying about. Often what happens is doctors start pushing painkillers on us, or thinking that’s all we are seeking, is drugs or an excuse not to work or do our things when it is really a thing.