What are your endometriosis symptoms like?
Severe cramping, abdominal pain, bloating, nausea, change in stools, GI flare ups, frozen pelvis, pain in spine, weight gain, ruptured cysts, cystic acne, unable to move, pain that takes breath away or immobilizes.
What was your journey to diagnosis like?
After having suffered painful periods for years, they changed after having children. More pain, more bleeding, heavy clotting, and dizziness. Sometimes I missed periods. Sometimes they happened every 2 weeks, sometimes there was spotting in between. One Dr. Suggested progesterone for PCOS. I wasn’t monitored after. 2 years later approximately, periods changed again. Weight gain despite running/ walking, more intense pain, more frequent periods, increased dizziness with heart palpitations, and cystic acne all over body.
I asked for referral back to gynecologist but was told “it could be handled” in clinic. The pain intensified, and came with nausea around periods. I wound up with so much pain one day equivalent to labour pains. My mom who is a nurse called EMT as she was worried of bowel rupture. I was in tachycardia, and taken to hospital. IV morphine didn’t touch the pain. I was given a pregnancy test even though I said it wasn’t possible. As soon as I mentioned that I was celiac I was released to manage my pain at home… even though c reactive was above 150! I went into a different emergency the next day as pain persisted. They did lab work, and a CT. found a mass on my left ovary, queried pelvic inflammatory, as well as some other parts, including bilateral pulmonary nodules. Very thankful to that emergency Dr. For listening and taking the time to investigate.
What has your experience with treatment for endometriosis been?
Through all of this, the only relief I have felt in years is through the recent surgery. It was starting to take over my GI system, and even consuming fluids, I would distend to look and feel like I was 9 months pregnant.
How does endometriosis affect your day-to-day life?
Painful periods are one thing to manage, but this became unbearable. I am a teacher, and single mom of two children. It was compromising work, I was unable to go in, or would go in, and have to leave. I was unable to be present for my children like I had been in past, from just at home to taking them to their activities. We also have dogs. I was unable to keep up with our daily walks. Had to cut down immensely or altogether with distance, depending on the day. Besides the pain, the pain extreme fatigue, was intense. I could fall a sleep sitting up after sleeping hours.
How does endometriosis affect your emotional well-being?
Not being able to be present for my children was very hard. Not being able to be effective in my job and needing time off was hard. Not being able to exercise- jog, walk dogs impacts one’s mental health as well. Living in intense pain and fatigue, where you have to continually advocate for yourself is exhausting. This especially when medically your findings don’t point directly to your diagnosis.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
I am still reading and researching information on my diagnosis. Understanding what I felt, why I felt, and that I wasn’t “just feeling” has been enlightening. I am thankful for the diagnosis, and surgery, and look to understand more for the future. I am cautious as I know my journey is not done. I will start HRT and know there is a chance for regrowth education, and knowledgeable Dr.’s are key. Especially ones who take the time to listen and investigate. This has been an exhausting journey over the years. I will never get that time back, but know that going forward, sharing stories provide hope for myself and future generations.
How have you found hope and support in your endometriosis journey?
My family has been my biggest support. While I’ve placed burden on them, they have been there for me. I have also found out lots of information and support through online groups. They were often more informative than my health care providers, because they had been through this and could relate.
What do you think healthcare for endometriosis in Canada should look like?
There needs to be more education. On top of the education, there needs to be more specialization. Or at the very least a list, and access to those who are specialized in this area. I have only found this after my major surgery. Please please above all listen to your patients. This is hard to diagnose without proper knowledge, and sometimes without surgery. Which leads me to specialized testing and therapies to help.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
I think there are far more women than we know of that are suffering through this. As well often with endometriosis there are other diseases that go with- for example adenomyosis. I also think studying the link to endometriosis being an autoimmune disease would be an important connection for many. Too many are suffering needlessly and need to be addressed to be treated with respect and dignity.