March was Endometriosis Awareness Month and April first was April Fools Day. “Endometriosis is notoriously difficult to diagnose because the symptoms are perverse” ~ Rose George. That describes my menstruation journey, it was a bad joke.
During the summer of 1985, I was twelve years old. It was the summer between grade six and grade seven. From the time I was six to sixteen, we always summered in the amazing Okanagan in British Columbia, Canada. The day I discovered the crimson smear in my underwear, I felt an excitement and sort of pride for this onset of womanhood, just as I was supposed to, as instructed by devouring novels by Judy Blume. It wasn’t very long before I realized that wearing a mattress stuck to the inside of your bathing suit was a tremendous drag. Little did I know that drag would be the understatement of a lifetime and that there would be no joy or pride in this for me.
By the next summer, we were taking the newly built skytrain into the city of Vancouver to see Expo ’86. On one beautiful morning, we were lined up at the gate before opening. Our goal was to run to the Spirit Lodge and be the first to see this popular attraction for the day. The Spirit Lodge always had tremendously long lines and we calculated that this was the best way to avoid longer lines later during the heat of the day. As we ran from the gate to the lodge, I began to feel lightheaded and nauseous. I had played all the sports at school and was very athletic, so this was unusual and unexpected. By the time we were in the line for the Lodge, I was bent over and trying my best to breathe through the stomach pain. It was so weird because I never cramped up as a runner during basketball or track and field at school. Once inside the attraction, I remember feeling clammy and sweaty. I couldn’t feel my hands and legs, and a blackness rose in front of my eyes as I went down in a faint. The medics were called, and I was rushed through the throngs of crowds (dying of embarrassment) in an ambulatory golf cart to the onsite clinic for first aid. The medical staff gave me some apple juice and a cookie. Since the moment had passed and I was feeling better, the entire debacle was swept under the rug as overexertion on a hot day, but that was not the truth. The truth was that this was me on my period and this would be my reality for the unseeable future.
In November 1989, I was selected at my school to go to an International Student Leadership Convention at Notre Dame University. We flew from Vancouver to Chicago and then connected to the final destination. While stopped in Chicago, I realized I was in trouble. My period was overflowing, and I couldn’t access a change of clothes because my luggage was checked through to the connecting flight. I had to literally fold an entire roll of toilet paper from the airport bathroom into a homemade pad and pray for a miracle. By the time we arrived at the hotel, I was soaked to my knees. Thank god for my long winter coat. The staff and fellow students on the trip were not aware of my struggle. I kept the shame of the situation to myself. Once in the bathroom at the hotel, I did my best to clean the coat I needed against the brisk autumn outside. I had to garbage my clothes because they looked like a crime scene. I tied up the bathroom garbage and then to hide the horror from my roommate, I found another location in the hotel lobby to bury the evidence. I sincerely hoped that no one discovered it, otherwise I was certain the homicide unit would be called in.
Throughout high school, this was my reality – both the fainting and constant changing of clothes. I remember going down in grade twelve with a girlfriend by my side. When I came to, she was directing the hallway traffic around my body on the floor. “Nothing to see here. Keep moving people. She’s got her period, that’s all people. Keep moving.” The doctors said that saying I was cramping was an injustice as what I was experiencing was more like labour pain. They put me on the pill when I was sixteen to try and control my irregularities, but nothing helped. Then, when I was twenty I had major breakthrough bleeding while still on the pill. From then on, I was on the pill with no break, while they tried to regulate the bleed. I was supposed to track the bleeding on my calendar with a red pen and had a full calendar year with more red than not. February 1996 had 4 days sans crimson sharpie. After a hysteroscopy and D&C, my specialist couldn’t figure me out and referred me to another specialist at UBC. In June 1996, my new specialist said that I didn’t ovulate, so my uterus didn’t know what to do or when to do it. He said and I quote, “Birth control is a waste of your time and money because you cannot get pregnant without fertility treatment and even then we cannot guarantee success. You might want to discuss adoption options. If you want a white baby, I recommend starting the process now because the adoption process can be extremely long for a Caucasian baby.” I was twenty three. Two weeks later I was pregnant.
We did the test at home because 1) I had never gone 14 days without a period and 2) I had morning sickness. My husband did the happy dance. I was certainly happy that I could get pregnant but had not necessarily planned to be expecting a baby at twenty three. I had always assumed that I would one day be a mother and I definitely fulfilled the mom stereotype within my group of friends – ie: I would sit on the hill and babysit everyone’s purse while they danced in the mosh pit at an outdoor university concert featuring then unknown Barenaked Ladies who later sold cassettes out of the truck of their car. When we booked to see my family doctor, she was away. Her locum confirmed that I was indeed pregnant and sent me to the lab for all of the “usual” prenatal bloodwork. On my second appointment, my doctor was back, and she gave me a weird look. She read through the report and explained that the locum had done all of her education in the states. In Canada, we usually don’t send someone for this blood test until after their third or fourth miscarriage because it’s an expensive test. I was diagnosed with anti cardiolipin antibody, an antibody that causes miscarriage and stroke. As a high risk pregnancy, my care was transferred to BC Women’s Hospital and I had to inject heparin (a blood thinner) into my ever expanding midsection every twelve hours to avoid miscarriage for the entire duration of the pregnancy. Every person that read my chart would exclaim, “Oh you’re infertile. This is your miracle baby.” Or, “Oh you have anti cardiolipin antibody. How many miscarriages did you have before they caught it?” Every. Single. One. And I would have to tell my tumultuous tale over and over, and over again.
My due date was March 12, 1997 but my water broke between Christmas and New Year’s. We went to our local hospital but as a high risk pregnancy in a high risk situation, I was transferred by ambulance to BC Women’s. I was in the hospital for a week, while they monitored the status of my amniotic fluid by ultrasound every day. In yet another unprecedented miracle, I had “resealed” and “refilled”, so I was sent home on bedrest. Two and a half months and twenty five pounds later, I was back at BC Women’s enjoying 77 hours of active labour. A medical student dislocated my leg while I was pushing in the birthing suite. Another medical student and the doctor had an argument about performing a c-section. The medical student insisted that this had gone on long enough – it was too long for both the mother and the baby. The doctor insisted that the baby was coming out naturally. Later, in the operating room when the doctor was trying to drag our daughter out with forceps, I thought he was going to pull me off the table. Then I went toxic and blew up with fluid, so we were in the hospital for yet another week.
(Although unrelated to my menstruation tale of woe, I feel it is worth noting that at this time Canada only permitted a 6 month maximum of paid leave from work. Since I had taken a 3 month medical leave while I was on doctor prescribed bedrest, I was only allowed another 3 months for my maternity leave. As I was still nursing, I made the life changing and career altering decision to stay at home and offer license not required daycare to two other children when my maternity leave ended in June.)
The many doctors and specialists all sang the same tune, this was our miracle baby, and this would never happen again. However, nine short months later, my body was apparently ready for another miracle and once again the story of infertility was resurrected, injections resumed, and specialists revisited. I was due on August 2, 1998. On August 13, we left our daughter with my grandparents before heading to the doctor to beg him to induce me. On our way, we were in a four car pile up and I ended up being delivered to hospital in an ambulance with (thankfully) only a broken finger and my husband who was not injured. The doctor came to visit me in emergency and admitted me as I was experiencing regular contractions. When his shift was over and he went home for the evening, I was delighted to see a female doctor in for the night shift. After hours and hours of pushing, I begged her to “take this baby out of me before my usual doctor returned”. When she too, was ready to concede, I was transferred to the operating room and my son was born via c-section at 3:58 am. When my doctor returned the next morning, he sneered, “C-section! You have to know that if I was here last night, you’d still be in there pushing.”
After the baby’s first feed, he had a massive spit up that included blood clots (about the size of a nickel or dime) and he was immediately taken to the intensive care nursery. The paediatricians were worried that he may have been injured in the car accident. At nine pounds eleven ounces, he was more than double the size of the babies the nursing staff were accustomed to. We settled into another week in the hospital while everyone tried to determine if the baby was okay. Although he would continue to projectile enormous amounts after nursing, no further clots were detected, and we were permitted to go home.
(By this time, I was running a fully licensed family daycare in our home and as I was self employed, I was not eligible for maternity leave. My daycare families were informed that the daycare would be closed for the month of August and that I would resume care for their children after Labour Day. Since the baby was so overdue and then in the hospital for an additional week, we only had two weeks before daycare resumed. My husband had used all of his vacation time during the last half of August, and I was not permitted to lift as I was still recovering from the c-section, so my dad took as much vacation time as he could to come and help me with the newborn baby, our 17 month old daughter, and the four additional daycare children. He was and is, truly, a saint.)
Everything then settled for what seemed like a millisecond. After our son’s third birthday, I started experiencing some unusually heavy periods. Like heavy for me, so basically hemorrhaging to the rest of the world. As I previously mentioned, I was running a licensed family daycare in our home. Our living area was on the main floor, but the bathroom was upstairs. I was soaking a super plus tampon every ten minutes and worrying about how to supervise the children. Removing the tampon was like withdrawing a plug, freeing a scarlet rush that included clots bigger than the palm of my hand. On three separate occasions, I had to call my mom to watch the daycare children so I could go to emergency. On my last visit, the elderly male doctor told me that this was a “private matter” between me and my family doctor and that I shouldn’t waste emergency resources for non-emergency symptoms. I called my family doctor in tears and was referred to yet another specialist who put me back on the pill to stop the bleeding and scheduled me for hydrotherapy ablation in February 2002. Hydrotherapy ablation is a day surgery procedure. While you are under anesthetic, they blow up your uterus and fill it full of scalding hot water to burn out the lining and you’re supposed to not ever get a period again (or if you do, it’s supposed to be unworthy of comment). I actually didn’t know if my procedure worked because my specialist insisted that I stay on the pill for every day my life afterwards to ensure that I never got another period.
I still encountered some significant pain and endured additional surgeries including hysteroscopy and removal of scar tissue from my c-section in January 2006 and May 2013. During the May 2013 surgery, it was decided that since I was now forty I would stop taking the pill and an IUD was inserted. I hated the IUD. I experienced frequent low grade cramping and it vibrated inside me at the movies and other places with loud music. I was supposed to have it until I was forty five, but I couldn’t stand it. During the summer of 2016, I had it removed and the doctor asked me about managing my endometriosis without it. I was all, “I beg your pardon?” In thirty years of period problems, no one had ever once mentioned a diagnosis of endometriosis. I felt like throwing my hands up in the air and yelling, “What the hell are you talking about?” But of course I didn’t. Good Canadian girls don’t yell at their doctors.
So here we are five years later without any birth control and without any period. While I am relieved that I haven’t had to deal with any of the additional complications I experienced with menstruation for almost 20 years, I must also admit that I am somewhat mentally scarred by the whole experience. If I am in a group of women discussing their periods (like this would be a normal thing), I tend to shut down because of my past trauma. On one occasion where the conversation was going on for longer than I was comfortable with, I could feel myself starting to get clammy and sweaty. My hands started to tremble, and I inexcusably started to cry. The ladies looked at me, both shocked and dismayed, and all could manage was a shaky laugh saying I must have PTSD from my pre-ablation days.
So this is why I consider Endometriosis Awareness butted up against April Fools a bad joke. I guess the next phase to look forward to is menopause but I’m not sure what the future holds for me on this front. How can you tell when menopause starts without a period? Has medicine evolved so that doctors actually care now about women’s issues? They certainly didn’t 20 years ago. They definitely didn’t 30 years ago. If they didn’t care about me when I was a young maiden, nor a young mother, I can almost guarantee that invisibility increases as I approach the crone. I think the moral of the story is to have courage - be brave and be your own healthcare advocate. If this is an area where you are still improving, consider inviting a family member or a friend with you to speak on your behalf.