Hi! My name's Lisa, I'm 35, and I was born and raised in Vancouver.
I work in the software industry. Outside of work, I'm usually at a barre class, introverting at home (face masks, foam rolling, Netflix, a good book and tea...any or all of the above are my idea of heaven), or exploring my hometown (such good Asian food here).
Tell us about your first period. Were you excited? Freaked out?
My first period happened when I was 12. I knew what it was and I was kind of excited in an Are You There, God? It's Me, Margaret sort of way, like "Oh wow, I guess I'm a woman now."
What was your period like when you were in high school (pain, etc)?
Throughout high school, my period was a little heavy at times but otherwise completely fine. I could count on one hand the number of times I had cramps in high school.
What has changed since then?
Sometime in my mid to late 20s, I started to get really tired during my period. The fatigue was so debilitating that I frequently took sick days from work just so I could sleep 12-16 hours to reach that baseline of feeling normal again. At the time, I convinced myself I was just stressed from working too much and my body was getting overwhelmed and shutting down. I went to the doctor and had blood tests for thyroid, iron, even cancer. All of my bloodwork came back perfect, so I figured that I just had really rough periods and this was my life. I'd try my best to schedule important things around when I was expecting my cycle, just to work around the need for those marathon sleep sessions, but there were a bunch of times where I was just the biggest flake with appointments and friends. I felt so much guilt around it too, canceling on people because "I was tired."
My symptoms worsened in 2016 and I started experiencing cramps on top of the fatigue. I figured this was just normal period pain—after all, don't most women complain about cramps? I thought that I'd been getting off lucky all these years with just fatigue and no cramping.
Were you ever diagnosed with a period related issue (endo, PCOS, etc)?
In the summer of 2016, other weird symptoms occurred. My digestion slowed waaaay down and my stomach was permanently bloated. I'd eat a little bit and immediately feel super full, but the amount I ate wasn't nearly enough calorie-wise to sustain me so I was lethargic all the time. Every time I had to pee, my bladder spasmed like an invisible fist was squeezing it in a pulsating rhythm; it felt like a UTI but wasn't. This was on top of the painful cramping. The symptoms seemed to get better for a couple of weeks but then came back full force, and that was when my family doctor sent me to the ER.
A pelvic ultrasound in the ER revealed that I had an ovarian cyst on the left side measuring 10 by 7 by 5 cm. It was so big that it was pressing on other internal organs and preventing them from functioning properly—hence the slow digestion, the bloating, the feeling of fullness even when I'd eaten very little, the bladder spasms. For a year after that, my doctors monitored the cyst via regular ultrasounds and tried hormonal medication to shrink it, but nothing worked. My regular ob/gyn was close to retirement and no longer had operating room privileges, so she referred me to a specialist for surgery. During that entire time I didn't schedule any out-of-country trips. I was super paranoid that if something were to happen and I ended up in the ER, travel health insurance wouldn't cover me because the cyst would be considered a pre-existing condition.
Have you ever had surgery for period related issues?
I had a laparascopic cystectomy in June 2017, during which I was diagnosed with stage 4 endometriosis. My surgery ran overtime; they removed the cyst from the left ovary and cleaned up the old blood that had completely filled the cavity between the uterus and rectum. Even so, there's still extensive internal damage from endo tissue and scarring that the doctors couldn't get to because there wasn't enough time. Oh, and apparently my right ovary is still stuck to another internal organ because of lesions. Fun!
Surgery is not exactly a barrel of laughs, but at the same time I recognize how incredibly privileged I am to be a Canadian with access to universal healthcare, and to have had health care professionals who listened and took my pain seriously. I know this isn't the case with a lot of endo patients. On the day of the surgery, all I had to do was show up at the hospital with my ID. When my husband and I left, the only thing we were out of pocket for was vending machine snacks and parking. I remember coming out of general anaesthesia and being super groggy and out of it at the time. Nurses came by to check on me, and one hooked up extra antibiotics to my IV because I'd been in the operating room for longer than expected. At no point did I worry about whether these healthcare professionals were out of network, or how much the antibiotics would add to my hospital bill. I thank my lucky stars every day that my experience was what it was.
Anything you wish you knew 10 years ago?
I wish I knew that endometriosis could manifest in the form of chronic, debilitating, inexplicable fatigue during my period. Ironically, I knew what endo was before my diagnosis, but I'd always associated it with the "classic" endo symptoms, namely severe pain and cramping. I figured that I didn't have that; therefore, what I had wasn't endo. It took things getting much worse to get diagnosed and to realize that this chronic health condition had been quietly brewing inside my body this whole time.
Since the surgery, I've really tried to practice self care in the form of better nutrition and sleep and regular exercise, and managing my stress levels. I say no to a lot more things these days so that I have time and space to just be. If I take care of these pillars, my body takes care of me, and although I still feel more tired than usual during my period I'm not sleeping 12+ hours.