Part 2

Like almost every woman I know, my experience with birth control has involved several treatments and even more ups and downs. The term itself encompasses so many different things: different medications, different side effects, different reasons for taking it (besides the obvious one), different health outcomes. The options are overwhelming, and for women who choose to take birth control, it can often take years to find the one thing that seems to work.

 I went on birth control as a teenager, and I only went off it for the first time in my late 20s. I was married and we wanted to try to have children. For the first year without birth control, I felt pretty good. My periods were regular and short, without much bleeding or pain. My second year being off birth control was when it started to go downhill. My bleeding and pain were getting worse. I was a long-distance runner and training for half marathons, but as my periods got worse, I would start to get horrible intense pain in my lower abdomen at just a mile or two into my workouts. It would force me to stop running and get down into a squatting position, breathing deep to attempt to rid myself of the pain. Sometimes this would go on for 5 minutes. Other times it would take 20-30 minutes for the pain to subside. The pain would be so intense that I would get sweaty and start to feel like I would pass out. I would get very lightheaded and also have the feeling of intense diarrhea coming on. Depending on where I was in my cycle–ovulation week, week after my period–the pain would be more or less intense. I would try to stop running and exercising as soon as the pain would come on, as it would shorten the intensity period. But I was stubborn (imagine that being a Taurus) and tried to push through the pain. The longer I tried to push through the pain, the more intense it became, and then I would of course need a longer break period. Once this pain intensity cycle stopped, I could continue on my merry way and it would not come back. It was interesting how it only came on in the beginning of my workouts and did not return, once the pain episode passed. 
Given these symptoms, my gynecologist at the time assumed it was my IBS. I was diagnosed with IBS in 8th grade, which is the same year that I got my first period. Coincidence? I think not. I went through every test imaginable as I had horrendous unexplained abdominal pain, and since IBS is a diagnosis of exclusion (meaning they couldn’t find anything else wrong) my doctor concluded it had to be IBS. I tried medications, but nothing worked. I stopped with the medications and eventually learned to clean up my diet and reduce stress. 

In the midst of all these intense pain episodes during exercise, somehow I figured out that my symptoms were not my IBS. While my gynecologist thought it was my IBS, he also talked me back into going back on birth control pills. I reluctantly did so as he told me this was the only way to stop the progression of endometriosis. Within one day of restarting and being on birth control, I never got the intense pain episodes while exercising again. It was only when I was off birth control that these episodes would come. IBS and endometriosis are linked in some way, and personally, I believe my “IBS” was all a symptom of endometriosis. This is how a lot of endometriosis gets missed. I hear this time and time again from women with unexplained abdominal pain who later found out it was endometriosis. When I say later, I mean up to a decade later, as endometriosis typically gets diagnosed 7-10 years after symptoms start. As my story details!

When I restarted birth control this time, after being off for two years, I was on a different one as I couldn’t go back on YAZ. This all occurred at the time of their infamous recall amid warnings about blood clots. Over the next couple of years, I switched birth control every couple of months as I felt absolutely horrible due to side effects. As I tried new medications, I experienced extreme fatigue, bloating, low energy, nausea, and intense mood swings. One of the birth control pills put 25 lbs of water weight on me! I unfortunately got divorced in 2015 and decided to come off birth control at that time as I was tired of dealing with all of the side effects and the stress it added to my body on top of ending my marriage. Once I came off, I felt so much better from a side effect point of view. At first my periods were not horrific, not a ton of pain or bleeding. I still had pain with sex. But as months went on, this changed again, and I began to experience the pain episodes I used to when I got my period without birth control–especially during exercise.

In 2017, I moved to Florida and saw a gynecologist who wanted me to retry birth control yet again. I gave it one more chance, but as before, the side effects ruined my quality of life. So I put an end to it and chose to suffer through my periods as long as I felt good the rest of the time. Over the years into my mid 30s, I had to stop doing intense exercise. I could no longer run. I was told repeatedly that I was just getting older and overexerting myself. I felt defeated, unseen, unheard. 

Unfortunately this is a common story I hear from women with endometriosis all the time. It takes years–decades, even–to figure out what’s really wrong, and the realization doesn’t arrive until countless attempts at being on birth control or off it. Sometimes the choice feels like the lesser of two evils. You can suffer the side effects of intense periods while being off it until you just can’t anymore–or until your doctor advises against long-term negative health outcomes–and then you try another medication, hoping it will change, until you get tired of all the debilitating physical and mental side effects. Nothing works because nothing is getting at the root of the problem. And while the world of birth control is a language that most women understand at least a little from an early age, endometriosis is rarely a part of the conversation. We need to change that.
Stay tuned for more of my story in a few weeks.