The first year or so that I had my period, everything was pretty normal. But around two years in, everything began to change.
The week before I got my period, it felt like my body and mind were completely out of my control. I would get extremely depressed, irritated and anxious. I had severe cramps. I know period cramps suck for everyone, but I’m not talking about regular period cramps. I would be in so much pain that I wouldn’t be able to stand. Sometimes my abdomen would hurt so much that I’d throw up.
Then, the heavy bleeding started. I had to change my tampon every few hours, and I’m talking Supers, not Regulars. My period started lasting for 10-14 days every month. It got to the point where I was spending the majority of my month dealing with symptoms related to my period.
My mom took me to the emergency room several times because the pain and the bleeding were so severe. Most of the time, the doctors thought that I was exaggerating my symptoms. They told me that menstruation was a fact of life, and I would need to learn to live with my symptoms. When my mother and I pushed back, they suggested that I see a gynecologist and get prescribed birth control. That's when things went from bad to worse.
My First Gynecological Appointment
The first gynecologist I saw was hesitant to put me on birth control because she didn’t want to encourage someone “so young” to become sexually active. When she asked if I was already sexually active, her judgement was apparent. I insisted that I wasn’t, which was the truth, and that I only wanted birth control because my periods were so out of control. I was so young, and so nervous. I didn’t know that I was being slut-shamed and that I could push back.
She looked at me skeptically and quickly wrote a script for the pill. She didn’t tell me what kind of birth control she was prescribing or brief me on the side effects. She gave me a quick lecture about remembering to take it at the same time every day and that I should never, under any circumstances, smoke if I was taking the pill. Then she sent me on my way.
The first birth control I was ever prescribed was a high estrogen pill. I took the pills dutifully, and my periods became more manageable. The cramps became less painful and the bleeding lessened. My period shortened to less than a week every month.
I Felt Like I Was Going Crazy
At the same time, I felt completely insane. I would be fine one minute and sobbing the next. I would be happy and then suddenly end up screaming at the people I loved. The smallest things would set off a cascade of crippling anxiety and overwhelming sadness. I became suicidal. Because I had no idea how hormones impact the body, I simply thought I was crazy. For a long time, my family and I didn’t even think my birth control could have anything to do with my feelings and behavior.
After about six months, we checked in with a different gynecologist, just to see if this was normal. Shocked, she told me that it wasn’t normal at all and that I needed to switch birth control pills immediately. Again, without much discussion, she wrote a script for an estrogen/progesterone combo pill and sent me on my way.
The depression and mood swings subsided. Mental illness runs in my family so they weren’t entirely gone, but they were manageable again. However, the symptoms surrounding my period slowly came back. The cramps and bleeding worsened. The nausea returned. It was somewhere around that time that I just accepted that my period would always be awful and I would just have to learn to deal with it.
It Got Worse
Over the next 10 years I tried various methods of hormonal birth control: other types of pills, the patch, the NuvaRing, but none of them adequately managed my period symptoms.
When I was 24 and I was on NuvaRing I began to get really sick. I had severe GI symptoms four to five days per week. My life was controlled by whether or not I was near a bathroom. I was nauseated all the time and sometimes all I could eat was soup and crackers. For over a year, I just dealt with these symptoms and didn’t tell anyone.
When I finally mentioned them to someone offhand, they insisted that I see a doctor. I saw a GI specialist who told me I had irritable bowel syndrome (IBS) and gave me a restrictive diet to manage my symptoms (which plunged me further in to an already existing eating disorder, but that’s another story). When that didn’t work, I saw a naturopath who did extensive testing for all sorts of diseases that matched my symptoms.
Testing revealed that my thyroid was barely functioning, my hormones were severely imbalanced, and that my white blood cell counts were in the tank. I had colonoscopies, weekly blood tests, and even a bone marrow biopsy. When none of these tests revealed a conclusive cause, my naturopath guessed that the hormones in my birth control were causing my symptoms. He recommended that I try going off all hormones and get a copper IUD.
Without much question, I followed his instructions. He was a doctor, right? The months that I was on the ParaGard IUD were some of the worst months of my life. My period lasted three weeks out of every month, and the week that I didn’t have my period my PMS was out of control. The cramps were so bad that there were days I’d literally get stuck lying on the floor crying. I had severe migraines all the time. The bleeding was so bad that I was changing my tampon almost hourly and massive blood clots covered the tampon every time it was removed.
One day, I looked up keywords related to my GI symptoms along with keywords about bad periods, like “severe period pain” and “heavy menstrual bleeding.” I immediately began to get results about endometriosis. In all the years that I’d been going to doctors and gynecologists complaining about my period symptoms, not one of them had mentioned it as a possibility.
Endometriosis is where the lining of your uterus grows outside the uterus on the other abdominal organs or within the abdominal cavity. When you get your period and the uterine lining sheds from your uterus, the tissue outside your uterus tries to shed as well, but it has nowhere to go. This causes severe pain and various symptoms depending on where the tissue is growing. Some of those symptoms include severe GI problems, hormone imbalances, and autoimmune-like symptoms because the immune system tries to attack the uterine tissue growing outside the uterus. All of my symptoms and test results indicated endometriosis, but no doctor had ever put them all together to get the right diagnosis.
I took my research to my naturopath and he apologized profusely for missing the connection between my GI symptoms and my menstrual symptoms. He referred me to a gynecologist who diagnosed me with endometriosis immediately upon hearing my symptoms.
She said that the most effective course of treatment was a birth control called the Mirena IUD. She then proceeded to explain all of my treatment options, including every form of birth control we could try.
I Learned to Be My Own Advocate
She was also incredibly patient and answered all of my questions. Somewhere along the way, I’d learned that it was my responsibility to advocate for myself with doctors. I wasn’t ever going to take a prescription without asking questions again. I wasn’t ever going to let a doctor tell me what was right for me without demanding to know why it was right. Together, we decided to give the Mirena IUD a shot and she promised me that if it wasn’t working, we’d reevaluate together in about six months.
I’m one of the lucky ones when it comes to endometriosis. The Mirena IUD began to control my endometriosis symptoms within a few months of insertion. I’ve never had any issues with the IUD, and my symptoms have been manageable.
For years, I just accepted my symptoms as part of my daily life. For years, I allowed doctors to ignore my assessment of the situation and dismiss my individual needs. I suffered in silence while doctors wrote prescriptions.
If there’s one thing I hope my story does, it’s to let you know that your birth control is your responsibility. Don’t just take whatever the doctor prescribes. Insist that your doctor answer all your questions. Insist you be prescribed a birth control that works for your lifestyle and your body. If you ever feel like your birth control isn’t working the way it’s supposed to, insist that your doctor give you another option. It’s your body and you deserve to feel good inhabiting it, birth control or not.