What are your endometriosis symptoms like? Like everyone with endometriosis, the symptoms impact different from one person to the next. For me, my symptoms are being in extreme pain anywhere from 5-10 days out of each month. I suffer with intense fatigue that makes it difficult to keep up with my busy days. I have heavy bleeding that can come on even in between periods. I have what they call endo belly where I become so bloated that it is painful and all clothing is uncomfortable. I experience clotting, headaches, breast pain and bad stomach aches. These came flare up at any time.
What was your journey to diagnosis like? For about 5 years I would be in and out of my doctor’s office, explaining my abnormal periods and the pain and severity of them. He would repeatedly brush me off and say things like, “well as women get older their periods change.” I was in my late 20s early 30 so that statement doesn’t even really apply. I would end right back in his office as my symptoms continued to worsen, I would explain that the level of fatigue and pain was making it difficult to function at my office job. I would explain that the bleeding was so bad that I would end up on the phone with the nurse’s line, and would be advised if that severity of bleeding continued I was to attend the ER, he would brush this off as well. He would send me over and over again for the same test, iron and thyroid I can’t even count how many times I have been tested for those two things with the exact same results each time. In November of 2019, my symptoms continue to get worse to the point where I had my period for 3 straight weeks at a heavy flow, I was dizzy, in pain and would spend most of my time on the couch when I wasn’t working. When I went to see him in regards to my worsening condition he sent me for an internal ultrasound. When I went for my ultrasound the tech asked me, “did you know you have a backwards uterus”? I said no I had no idea, and she explained that my doctor would know that just based on him doing routine pap. He called me into his office to go over the ultrasound results where he advised me nothing was out of the norm. I first asked why he never told me I have a backwards uterus, and he said well it doesn’t impact you so never thought to tell you, this frustrated me as it is my body and I should have been told this. He was about to send me on my way and I said, “no you need to keep doing something to get me answers none of this is normal and something is wrong.” He agreed to refer me to a gynecologist. I asked, “what am I meant to do with this pain and bleeding while I wait?” and he just said take some Advil. At that moment I decided to start looking for a new doctor while I waited for the specialist appointment. I got a new doctor in Jan of 2020, she decided to pull the ultrasound results that had been done in December where she informed me that I had a fibroid on my ovary that I was never told about, I was really upset that this hadn’t been told to me. My new doctor didn’t think this fibroid was causing all my issues and wanted to wait to see what the gynecologist would have to say. The waitlist for the gynecologist was about 8 months, but it ended up being earlier due to COVID as she was able to book an appointment over the phone. I had my first phone appointment with her in April of 2020. She was incredibly detailed with me and asked so many questions, based on that she advised me that she suspected I have endometriosis and would like to see me in person once it was safe to do so. In July of 2020, I had an in person appointment where she discussed options and asked if I would like to be on a waitlist to get laparoscopy surgery to confirm if I did indeed have endometriosis. I went on the waitlist, despite being scared and wondering why such an invasive procedure was the only real option for a confirmed diagnosis. In November 2020, I had my surgery. This was during a pandemic and had to do it totally by myself, this was my first surgery and I was not allowed to bring anyone with me to “hold my hand” luckily my gynecologist/surgeon is wonderful and has an amazing bedside manner. I received my surgery and was too out of it afterwards to hear what she told me while I was in recovery. A few weeks later at my follow up appointment she advised me that I did indeed have endometriosis and that it was quite extensive and that it was too dangerous for her to remove any of it, she said she worried I would either hemorrhage or she would cut one of my organs as it has attached to my kidneys etc. She said I also have lesions all over the place that bleed during surgery and some tears in the tissue around the uterus. She said my case is now a specialty case and that I am now on a waiting list to be sent for a specialist to see what kind of surgery they may suggest. I have had mixed emotions, I am angry it took so long to get to this place, being brushed off is such a terrible feeling. I am scared about what the next options are and in the meantime, I will have to wait at least 5 months for these next steps. It has been a terrible and deflating experience it makes you feel like your going crazy or “it’s all in your head”. I am thankful to at least know now what the issue is and I am so thankful for my new doctor and gynecologist.
What was your experience with treatment for endometriosis been? I personally have chosen not to take the hormones that have been offered, my doctor and gynecologist have worked with me on what natural things I can do. I have also done a lot of my own research and have implemented diet changes, acupuncture and various other things. I constantly have a heating pad on hand. I have my own reasons for not wanting to take hormones and birth control for this, but it is typically what is offered. Had my surgeon be able to safely remove some of the endometriosis, it is my understanding that often temporarily helps with some of the symptoms. Not a lot of variety is offered in the treatment of endometriosis and a lot of what is offered often has some negative side effects for individuals.
How does endometriosis affect your day-to-day life? This has had a very negative impact on my mental health, it makes me feel isolated as those around me don’t understand it or have even heard of it. I am constantly fatigued, never know how bad the pain is going to be or for how long. It is so difficult to focus when it is a bad flare-up, it consumes so many of my thoughts and I always have to be prepared for the next flare-up. I lose out on so much time when I need to be close to home due to all the symptoms. Other than the online support groups I find it so lonely living with this. There is also a stigma around anything to do with reproductive health making it difficult to talk about. I was in a position of needing to tell my boss as I knew I would be having more and more tests/procedures etc. It was so difficult being in a position of having to share something so private, I am very lucky as I have a very understanding boss but that is not often the case.
How does endometriosis affect your emotional well-being? This impacts so many of my relationships, I find I often feel depressed dealing with this and so isolated which has been even more difficult as we’re on tight restrictions with COVID. I feel very alone in dealing with this. I live with anxiety daily and often get a maximum of 4 hours of sleep a night.
How has endometriosis shaped turning points in your life up until now and looking toward the future? It is likely that I will never be able to have children because of this and that is so difficult to deal with. It is something I play on repeat in my mind. I am constantly worrying about keeping up at work as I am in a high-pressure job and I need to be focused and energized and that is very challenging. It impacts all of my relationships and I am sure is tiring for them as well as their constant worry and concern for me.
How have you found hope and support in your endometriosis journey? Loved ones have shown me a great deal of support as well as my employer which eases some of my anxiety. In addition, the online Facebook support groups I am on are so powerful as it is individuals who truly understand and can give advice and support.
What do you think healthcare for endometriosis in Canada should look like? It should be well recognized amongst health care providers, there should be common questions that should be asked to get an idea of if the patient potentially has endometriosis. It shouldn’t take years to be heard/taken seriously by a doctor. The current wait times are unacceptable and patients should be triaged accordingly to get the help they need/deserve.
What do you think it is important for people to know about the experience of having endometriosis in Canada? That it is not in people’s heads and that they are dealing with extreme pain. Some people can’t even work as the pain becomes too much to handle. That it has such a negative impact on your mental health. To understand that this is an invisible disease and to ask questions and help break the stigma around this.