What are your endometriosis symptoms like? Endo for me is being tired all the time, no matter how much sleep I get. It means serious dietary changes. Light nausea 24/7. Severe nausea during my period. Periods were (I had a hysterectomy last year) unbearably painful and caused my whole body to ache horribly and brain fog. I was always in pain in one way or another before excision surgery.
What was your journey to diagnosis like? I was misdiagnosed for years with diagnoses including IBS and depression. One gynecologist even told me nothing was wrong with me. I went to a naturopath who greatly helped with pain management. It wasn’t until I started having multiple early miscarriages that I started to really look into what was going on. Finally in my mid-late 30’s I was diagnosed with endometriosis. At almost 39 I was diagnosed with endo and adenomyosis (endo’s evil twin). I had a hysterectomy and excision surgery. They found a grapefruit sized fibroid and a huge endometrioma on my left ovary, which I ended up losing as well. All my organs were fused together inside and stuck to my bowel which was causing most of my IBS-like symptoms.
What was your experience with treatment for endometriosis been? Most doctors will push birth control or Lurpron. The side effects were too much for me to handle and luckily my surgeon stopped pushing them on me. They don’t work for everyone either. I also declined Lupron and IUDs because of what I have read and family experiences. Treatment from my naturopath and some acupuncture helped me more than anything until I could have surgery. I had an 18 month wait from the time of my referral to the time of surgery. Overall I was very dissatisfied with most of the doctors when it came to this journey. I found many of them quite condescending.
How does endometriosis affect your day-to-day life? For 2-3 days during my period every month I was bed bound because of the pain, dizziness and nausea. I also had cysts that would rupture every now and then that would cause 10/10 pain for a few hours and 7/10 pain for days after. I hadn’t worked full time in years because of my health and when I tried to work those hours I had to quit because I was too sick from the endo.
How does endometriosis affect your emotional well-being? The hormonal imbalance due to all of this causes severe anxiety most of the month, even after a hysterectomy (I still ovulate so I still have PMS/PMDD). With that comes insomnia, leaving you unable to function properly through the day. Friends get sick of you being sick all the time or think you’re just making excuses or being lazy and they stop reaching out to you. You stop reaching out too because of the guilt of feeling like a lesser human being. I lost most of my friends, I could barely work and my husband had to work almost double to pay the bills. His kids accused me of being too lazy to work. It puts a lot of stress on the marriage when you’re constantly sick and you can’t work. Sex is painful and hardly enjoyable anymore.
How has endometriosis shaped turning points in your life up until now and looking toward the future? I lost out on my ability to have my own children – something I had wanted since I was a child. It wasn’t a choice. I was robbed of that gift. I was mad at my body for not doing what it was made to do and still feel overwhelming guilt for not being able to give my parents grandchildren, even though they have been very understanding and supportive. I have had to put my dream of starting my own business on hold until I know I can physically and mentally handle it. I literally have no social life. I was too depressed to reach out when I was so sick and those relationships have unfortunately died off.
How have you found hope and support in your endometriosis journey? The Endometriosis Network of Canada Facebook group has been absolutely amazing. The people in there are so supportive and informative! They became my family during my hardest times because they really understood what I was going through. Through that group I met a wonderful friend in Nova Scotia who has had similar struggles as myself. It’s nice to know I’m not alone. My husband has also been very supportive and my mom has been my rock throughout everything. I wouldn’t have made it through some extremely dark times without her support.
What do you think healthcare for endometriosis in Canada should look like? I think the doctors need to do a better job of listening to and hearing what we are saying when we tell them about our struggles with this disease. Don’t just throw meds at us. Explore different options and be more willing to do excision surgery. I think we also need more surgeons who specialize in excision and I believe more doctors should be properly trained in endo all around.