Surprise!
I got my period during recess on St. Patrick’s Day. I was wearing white shorts and was only 11, but a well-timed bathroom break and a wad of toilet paper saved me from a lot of potential embarrassment. My mom hadn’t yet given me the puberty talk, and my friends still thought deodorant, training bras, and breaking out with “acme” were embarrassingly taboo, so if it wasn’t for the Maturation Program at school, I probably would’ve thought I was seriously ill. I was first out of all the girls to reach this milestone.
Since it had taken me by surprise, I started tracking when it started and stopped on a calendar I had in my journal. After a year or so I quit because my cycle was so unpredictable. I was told this was normal for the first couple years and that it would eventually regulate. So while I waited for that day to come I just relied on PMS symptoms to tell me my period was on the way. They were pretty minor—a little tenderness and maybe some bloating—and went away once my period started. Other than the fact I was bleeding down yonder, my period felt like any other day of the month. As more and more of my friends joined Aunt Flo’s club, I learned they were relying on heating pads, ibuprofen, and chocolate to get them through their periods, and I was lucky.
My friends and I would daydream about our future families. They would talk about how many kids they wanted and the names they’d picked out, and so would I, but then I’d mention that I probably wouldn’t be able to have kids. I was barely a teen and hadn’t seen a doctor, but something inside kept telling me something was wrong, and that whatever it was was impacting my fertility.
Around 13 or 14 I went to see a dermatologist for severe (and very out of control) cystic acne and was prescribed birth control. I mentioned how my periods were still irregular and my doctor said these pills should fix the problem. Finally! I was going to be cured of whatever was ailing me!
Taking the pill is hard (and embarrassing) when you’re still trying to navigate junior high, so I would forget to take it, or not take it for a while. The pill and I had an on again, off again relationship for years. I tried several brands, but I never saw improvement in my acne, and I never saw improvement in my cycle. However, I kept trying because doctors said it would work.
By 15 my once reliable period-indicator, PMS, had stopped working and I was beginning to see some irregularity in my flow. I now had no symptoms prior to or during my period (which would’ve been a good thing if I was predictable) and no way to tell if I’d have a light period or a heavy one. At this point I would generally catch it in the bathroom first thing in the morning before disaster struck, but sometimes I’d be caught off-guard (like at the end of my dance recital), and ruining underwear was becoming more of a common occurrence.
Later that year I was going on a bike ride with my crush, got on my bike, and felt impending doom—something was running down my legs and soaking through my jeans. I made up an excuse to run inside my house quickly (while awkwardly concealing my rear), and another excuse to explain why I’d just changed my pants. An hour later when we returned I sent the boy home before getting off my bike so I didn’t have to make up another excuse—I’d bled through those pants (and a pad) too.
The summer when I was 19 was when my cycle changed again. I had no idea my period was coming, but it showed up just in time for the firework show I was so excited to see. I felt an unfamiliar twang in my lower abdomen, which increased in intensity until I needed something to take the edge off. After waiting for some Excedrin to kick in I realized the pain was getting worse and the max dose wasn’t helping. I ended up on the floor, propped up by pillows. I focused on breathing, while contorting my body into impossible positions in search of relief before realizing these were my first ever cramps. Cramps. These were what my friends had been dealing with for years, but these were debilitating! I was determined, so I went to the firework show, but admitted defeat before the show ended, came home, and managed to tough out the rest of the week.
My next several periods were like that and then the severe pain suddenly stopped, leaving me for a year or so with cramps I could manage with an ibuprofen or two. But by the time I was in my early 20s nearly everything was irregular—when my period would come, how heavy it would be, the symptoms I’d experience, the severity of the pain, etc. The only things for certain were that it would last a week, at some point it would be brown or black (old blood), and I'd pass blood clots.
The doctors
At 21 I got engaged. I had never been to an OBGYN before (too scary), but was under the impression I couldn’t get a marriage license without a trip to the doctor, so I made an appointment. Finally! I was going to get answers! I told the doctor this was my first trip to an OBGYN and I had some concerns, and she informed me we could talk about them later. She brought in a student and, without asking me first, talked the student through how to do the physical exam while she stood in the back of the room. When the student finally left I asked the doctor why my periods were so irregular and she told me “Sometimes it just takes a few years to regulate.” Hmmm… I was going on 10 years. I asked if I was going to be able to have kids someday: “There’s no way to know until you get there.” Okay… but what if I want answers now so I can fix the problem before I want kids? “You’re probably fine.” I think something’s wrong. “This is just your normal. Now what birth control do you want?” Conversation over. Although I left with a follow-up appointment to get the birth control I chose (the implant instead of the dreaded pill), I bawled my eyes out on the way home. I felt violated, ignored, hopeless, and crazy.
She never asked about my health history or family history and we never discussed birth control options. I found out on my own that the implant, which is hormonal and surgically inserted and removed, could potentially cause life-threatening complications in a person prone to blood clots, and I’d recently had one in my left arm. Cue the tears.
My mom set up an appointment with a different doctor, and I went in for another exam. Turns out I was supposed to get a pap smear and I had an infection the other doctor and student had missed. I told doctor #2 my periods were very irregular and I felt something was wrong. “Let’s get this infection cleared up and put you on the pill. It will regulate your cycle.” I said it hadn’t over the past several years. “Well, I can’t recommend another form of birth control. The pill is really the best option for you. We can try another brand.” So back on the pill I went until my engagement broke off.
Later that year I headed back to the dermatologist to see if we could get my still-out-of-control acne back under control. I had now transitioned into the world of adult acne, so she gave me something new—spironolactone—which wreaked havoc on my already-sporatic period. The solution? The pill. “It will regulate you,” she said. For the first time in my life I actually had a predictable (yet obviously anovulatory) "period" every 28 days. However, I stopped taking all medication after a few months when I switched jobs and my health insurance coverage changed. And just like that my period reverted back to its old habits—the pill was just a cover-up and nothing had actually fixed or regulated it.
A period of change
At 22 I had the heaviest period of my life. I was meeting some friends at the arcade, and my period had just started. My “usual” at this point in time was really light bleeding, especially for the first 2-3 days, so I figured I’d be safe with dark pants, and a fresh pad (rather than a panty liner). An hour in I was feeling a little wet—it was kinda hot and sweaty in there, so I was pretty sure that was why. Shortly after I was thinking it might be time for a change, but I had no quarters, no backup, and figured I’d be fine for another 30 minutes until I got home.
I got in the car to drive my friend home, and as soon as I sat down a warm gush of liquid rudely informed me that this was not sweat. In an instant I was grateful that I was driving my own car. At night. With leather seats. After I got home I reviewed the damage in my pants. I was certain I had lost all the blood in my body and was horrified to see so many large blood clots spilling out of my pad. I cleaned myself up and then went out with an armful of wet towels to wipe down my driver’s seat. While the driver’s seat was saved, no amount of laundry products were able to redeem my clothes. So, into the trash they went a few weeks later; just another casualty of Aunt Flo.
This drastic change in my cycle prompted me to find a new OBGYN. Certainly this indicated a real problem and these symptoms would get her to pay attention to me. I got a recommendation, got an appointment, and 4 months later saw this new doctor. After an exam I talked to her about my symptoms. “Well,” she told me, “It can take a few years for your period to regulate.” I was feeling determined that day and wasn’t going to accept that answer. I told her I’d had my period for over a decade. “In that case, let’s talk about Polycystic Ovarian Syndrome.” Finally! Victory! She explained the diagnosis was made through a process of elimination and that if everything in my blood work came back negative we could determine I had PCOS.
I had my blood drawn that day and waited for the lab report over the next few days. When it didn’t come I called to ask about it. The nurse read my results over the phone and said everything was negative or normal. She mentioned my androgen levels were a little high, but were still considered normal (nothing to be worried about), and after she finished reading my report, the call ended. Since I never had a follow up, discussed a game plan, or received an official diagnosis, I figured I must have PCOS (even though my androgen level was normal) since everything came back negative.
For the next 2 years I lived with PCOS. I had a diagnosis, but still didn’t feel like I had an answer. I didn’t take any medication for it, but tried to manage my symptoms with diet and exercise. PCOS can unfortunately lead to diseases like diabetes, so I wanted to cut back on sugar and incorporate more fruits and vegetables to reduce my risk and boost my overall health. I tried unsuccessfully to find a dietician to help me create meal plans and ensure I was getting all the nutrients I needed, but after doing my best to figure this out alone I stopped trying. I didn’t really notice any improvements in my period symptoms or my acne (I was crossing my fingers), so it was hard to maintain those lifestyle changes for long.
The beginning of the "endo"
At this point it was hard to determine the first day of my period or distinguish between menstruating and mid-cycle spotting. Generally the first 2 or so days would start out with old blood (either brown blood or stringy, black, tar-like blood clots), then maybe it would alternate red blood with brown, stay brown the entire time, or stay red until the end. The last 2 or so days would also likely be old blood. As for my flow, I would generally have 1 day that was heavy enough to wear a regular tampon (usually day 3 or 4), but sometimes my period would lighten up and almost stop in the middle, and then get heavier again over the course of a week. Irregular everything was a pain in the butt, but at least irregularity was the one thing I could count on.
The Halloween I was 24 I went dressed to work as “Bad Ash:” a biker chick complete with temporary tattoos, magnetic “piercings,” and black pleather leggings. While cramps might have helped me pull off a hardcore persona, I was pain free and glad this would be an easy period.
While sitting at my desk that morning I felt that sudden unwelcome gush of blood down yonder. Having learned my lesson from the arcade, I didn’t wait, and immediately hurried off to the bathroom discreetly concealing a pad in my pocket. Behind the closed door further inspection revealed a troubling new development: a wall of blood. While I hadn’t yet leaked onto my clothes, one end of this massive blood clot was stuck to my body and the other end was stuck to my pad. I was faced with a choice—put my pants back on and overflow in a few minutes or overflow now if I keep pulling and the surface tension breaks. Either way it was going to create a mess that would require serious cleanup. I chose the latter hoping I could catch most of the blood before it spilled out everywhere. The outcome? It spilled out everywhere.
I lived pretty close to work so I took an early lunch and headed home to change my clothes. After the arcade incident I kept a small towel in my car (in case of emergencies) which I laid on the seat during the drive home. By the time I arrived 10 minutes later it was already saturated in blood. I jumped in the shower to rinse off my lower half, put on my second pair of black leggings (that were luckily clean), ate a quick lunch, and got back to work before too long.
I consider that the day my healing began. That was the day I met my husband—a nutritional scientist who had the exact plant-based diet I’d been trying to follow. When we started dating I started eating more the way he did, and after we got married I started eating everything he ate: lots of fruits and vegetables and limited (if any) sugars and processed foods.
We were married in March, so at the end of February I went back to the OBGYN to get birth control. I’d done research this time and wanted to try the non-hormonal IUD. My then-fiance was trying to figure out what supplements might regulate my cycle naturally, so I figured I’d be able to tell if my cycle was normalizing since no hormones would be affecting me. After it was placed I scheduled a follow-up ultrasound a month later to ensure it had settled in the right place.
During this follow-up exam I watched as the tech checked out my IUD with the wand. I’d been following a healthy diet and was hoping my PCOS had miraculously gone away, so I asked if she could look at my ovaries. She hovered over the left one and I didn’t need her to tell me what the image showed—it looked like Swiss cheese and was definitely polycystic. She tried to find my right ovary, but couldn’t get a clear view. All that was visible was one large cyst.
I also asked her a little about a new symptom I’d developed—painful sex. It had only been 3 weeks since my wedding night, so I figured I was worrying a little too soon (I’d heard the first few times were painful), but since I was already at the doctor’s office I wanted to bring it up as a precaution. Since she couldn’t answer my questions I chatted briefly with one of the PAs in an office. I told her my pain was sharp, deep inside, significantly more painful with deep penetration. Every position hurt and the pain was getting worse. The PA asked about my other symptoms and that was the first time I ever heard endometriosis mentioned. I had a friend in college who had it and I knew I had a family history, but I didn’t know much about it. She said it’s possible I had it, and once again hormones were brought up. I assured her I’d tried them and never seen any improvement, so she said managing pain through diet was an option or surgery to definitively diagnose and treat it.
I mulled over what she said, talked to my husband about it, and felt that surgery seemed too extreme. I decided I’d just wait it out, keep trying to heal my body through diet, and hoped the pain would go away once I got used to sex.
By May the pain from sex was worse and I was about ready to commit to a life of abstinence. In addition, I was now sleeping 15 hours a night and waking up exhausted, experiencing flu-like symptoms, and having excruciating period pains that were unresponsive to OTC medication. These left me unable to speak and longing for the first debilitating cramps I’d experienced as a teenager. I debated going to the ER, but ultimately decided not to as I realized I couldn’t drive myself and figured they’d probably just laugh at me for not handling period pain well.
After missing several consecutive days of work, I realized this was something serious and I needed to see the doctor. THIS TIME I was going to get answers.
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