I wrote this essay in May of 2019 after receiving an endometriosis diagnosis.
In a world where we over share, I hesitate with this. This is too close to my heart and potentially too personal. A funny picture of my dogs, a moment of affection between my husband and I, a delicious meal perfectly plated…you can have every inch of it. You may like it or reject it (but lets be honest, most of us don’t share with the intention of being rejected.) Sharing publically is a quiet plea for acknowledgement and acceptance; yet, it is also an act of courage and vulnerability made easier when the stakes are lower.
This feels too much. I have experienced—and, in my opinion, in large part due to the fact that I am a woman—that being “too much” (too opinionated, too loud, too smart, too funny, too big, even) is almost more unlikeable than being less than enough. And so we learn to make ourselves smaller and quiet experiences that may be seen as such.
Unfortunately, we reinforce shame and embarrassment when we do this, not only within ourselves but also in people with similar experiences. Shame and embarrassment are primary reasons that people neglect to seek medical care and so I’m learning the importance of sharing personal experiences, even at the risk of rejection. By doing so, we open avenues for people to feel more safe, comfortable, and confident to discuss things that may otherwise be seen as “too much.” If one person reads this and seeks medical care sooner, it would be worth the number of people who read this and find it unbearably self-indulgent (which in fact, it feels).
Close friends and family already know (and I am sure a sprinkling of random individuals who I inappropriately over-shared with). This has been all-consuming after all…and a pot with a lid only boils for so long before it bursts. And I did just that. Several times.
In the beginning of February of this year, after two and a half years of unsuccessfully trying to conceive on our own, my husband, Rob, and I underwent our first IVF cycle, which inevitably failed. It wasn’t just a failed cycle; it was as one doctor put it, a cycle that had “terrible outcomes.” IVF, or in vitro fertilization, is the process of extracting the woman’s eggs, retrieving a sperm specimen, and combining them together in a petri dish. You then transfer the embryo back into the woman’s uterus and hope that it will implant itself to create a successful pregnancy. IVF involves giving yourself injections multiple times daily, frequent blood draws and intravaginal ultrasounds, and going under anesthesia for the egg retrieval. Its really expensive, not always covered by insurance and doesn’t always work.
When I woke up from anesthesia after the egg-retrieval I was wheeled to an isolated area where I sat behind a curtain waiting for the doctor. I remember one of the nurses asking me what shows on Netflix I wanted to watch when I got home. Even in a groggy- medicated-stupor I over-thought my response. I knew I had already binged the shows I wanted to see so I would be relegated to Bravo re-runs. However confident in my answer, I hesitated to tell the nurse because I didn’t have the enthusiasm to explain that you can be a feminist and watch The Real Housewives franchise...just ask Roxane Gay.
Separated by thin, draping fabric, I heard the doctor speak to the patient next to me. I also heard that patient cry when the doctor left. The nurse entered to console her and said, “its still not over.” I felt compassion for that woman but I also desperately did not want to be her. I did not want to be an infertile woman crying about my body’s inability to work properly. There are too many terrible things in this world for me—someone with a decent amount of privilege, living a comfortable and safe life—to feel sorry for myself over this. I had deep empathy for that woman, but very little for myself. “How am I sitting here wearing this weird mesh hair-net, naked under a hospital gown, with these little, stupid booties on, going through IVF? Me? I’m 29! I’m healthy!”
The doctor then entered my curtained area and told me they were only able to retrieve eight eggs. “It was less than expected,” she said. When the doctor left the nurse entered and went over discharge instructions with me. I remember her aggressively questioning me: “Why are you shaking?” I was cold, not seizing like she thought. But even my shivering was “too much,” too dramatic.
Eight eggs. That’s not a lot. Some women get 27 eggs. I knew because I had been following people’s IVF journeys on Instagram and YouTube. I wondered why I only got eight. I was perplexed but still hopeful. I worried but I did not cry. I was numb.
I learned that IVF is a numbers game. The more eggs you have the better chances that more eggs will be fertilized and therefore there will be more to chose from when transferring. Any embryos that aren’t transferred back into the woman’s uterus can be frozen and used during another cycle. So the fact that I only had eight eggs retrieved decreased the chances of having embryos make it to transfer let alone having any to freeze.
Ultimately, three eggs fertilized normally and only one embryo made it to transfer day, which was five days after the retrieval. One embryo. All of those legal documents regarding frozen embryos were null. The questions about what we would do with our frozen embryos in the case that Rob or I died, if we both died, if we got a divorce, etc. were trashed. We wouldn’t have any embryos to freeze. But we had one embryo…and you only need one.
We had what we were calling our “miracle embryo.” After the transfer, I couldn’t help but believe I was pregnant. I was told to act as if I was. Everything from that moment on felt like a pregnancy symptom. If I was tired, it was because I was pregnant. If I was hungry, it was because I was pregnant. My boob itched for a millisecond while I was showering, obviously, because I was pregnant! I found myself in a Google-black hole—typing bizarre, irrational questions in an attempt to connect elements of my experience to others who had positive outcomes. I was desperately searching for hope.
Unfortunately, hope is not always enough. We did not get pregnant from that cycle and we did not have any frozen embryos. It was as if we didn’t do anything at all. We were exactly where we started (with the exception of being in a little more debt, of course).
Undergoing IVF, for me, was emotionally easier than the years of infertility leading up to it. It was actionable. I felt as if I was doing something. Anyone who has experienced infertility knows that it doesn’t make sense. You don’t start off trying to get pregnant thinking that you won’t. You start off thinking that you’ll be pregnant the first month. After all, its likely you’ve spent most of your sexually active life trying to prevent pregnancy. In my case, I had even denied Rob’s suggestion to get pregnant earlier in our marriage, something I now struggle to accept. “We’re too young. I want to be more stable. I want a career,” I remember telling him.
When you start trying and it doesn’t happen, you resist “infertility” as a concept and instead try to problem solve, as if getting pregnant requires anything more than what we all know it takes. You go through many moments of believing you are doing something wrong—maybe you aren’t tracking things quite right or eating the right foods or taking the right supplements. You think maybe you’re not getting enough sleep, you’re not exercising properly, or you’re too stressed out. Perhaps the timing is wrong, you need to focus on your career, or maybe there is something wrong with your relationship. You are constantly looking for something to fix. You question whether you should even be a mother; whether you’re a good enough person. You also resent the bad advice people give you (and you will get a lot of bad advice). And, sadly, you become envious of the women who seemed to get pregnant so easily.
Infertility is very isolating. The fact that “a lot of women go through this” (a sentiment iterated almost inevitably any time I shared my experience) never comforted me. For me, being infertile was more than just not being able to have a baby. It was years of fear and pain actualizing itself. It was resentment towards doctors who, for years, didn’t take my concerns seriously.
After the failed IVF cycle I was told that I had a good egg reserve, but sometimes in women who have endometriosis the egg quality may be suboptimal. Endometriosis. This was a term I had heard many times but was never able to claim because a true diagnosis only comes from having a laparoscopy—a procedure in which a surgeon can view a woman’s reproductive organs and perform surgery if needed. I was told that I had “suspected endometriosis” and this was a potential cause of my infertility and pain.
Almost a decade of pain.
I had my first period at 14. I had my first painful period at the age of 22 and that is the one I will never forget. Up until that point, my periods were pretty insignificant. I had mild cramps but nothing notable. I had no idea that my first painful period would be the first period of every period I would continue to experience for the next seven years and eventually contribute to my infertility. Rob and I were living in Florida at the time, nearly 1,000 miles from our hometown in New Jersey. Rob was in the Navy and was out to sea for a few weeks. I remember being in our apartment when I was hit with the most intense sensation I’ve ever experienced. I was alone, screaming, but there was no one to help me; no one to witness the discomfort. I remember reluctantly calling my mom. At that time in my life I hated asking anyone for help. Because Rob and I were married so young (at the infantile age of 21) I had this deep need to prove (mostly to myself) that I was mature and adult enough to handle everything independently. But even this was too much to go through on my own. My mom advised me to go to the ER. We were insured through the military at the time and the hospital I had to go to was about 30 minutes away. I feared any medical bill I might get by going to a walk-in. I shouldn’t have drove because of the agony I was in, but I didn’t have anyone else to drive me. Not anyone I was willing to be that vulnerable with, to be “too much” in front of. I remember sobbing as I drove, my vision slightly blurry. And when I pulled up to the hospital I called my mom again. The pain was gone. “Should I still go in?” I asked her. I decided not to and instead drove home. I felt crazy. What the hell just happened?
And so it continued. Every month I would have these intense periods—so intense they would sometimes make me vomit. The pain would last anywhere between one to three hours. Rob learned the drill quickly. If he was around he would rub my throbbing legs as I squirmed in a fetal position wrapping my arms around my waist. He also learned that when I said, “I think I’m about to get my period,” that meant we had to stop whatever we were doing, no matter where we were, and go home. There was no way I could endure that pain publicly. The worst part was that the pain was unrelenting. It wasn’t alleviated until it was over. But when it was over that was it, until the next month.
I finally decided to make a doctors appointment after a few months of continued pain. During this visit I described my period pain and the doctor sent me for an ultrasound. I was told the ultrasound didn’t show anything and I was “fine.” And that was it. No other investigation. My pain wasn’t addressed at all. I began questioning myself. Was I just intolerant to pain? Is this normal? No one else really seemed to be concerned so I just continued to go on with my life. No big deal I guess.
From then I would see other doctors who would put me on a series of birth control pills, often offering contradictory, inconclusive information. They would suggest, through subtle and passive acts like handing me pamphlets on the topic, that I could potentially have endometriosis. Not really sure what to do, I would experiment with my diet in an attempt to assume some type of control over a body that felt out of control. I also tried acupuncture as a more natural alternative to pain relief. But nothing really helped. I remember crying once during one of my acupuncture appointments. “Are you concerned that this isn’t working?” the acupuncturist asked me. Yes. I was concerned. It wasn’t working. I was still in pain and I was terrified that there was something really wrong with me. I was tired and I felt completely alone. I didn’t feel as though I was being taken seriously. And I feared that all of this would one day affect my ability to get pregnant—something I always wanted but of course wasn’t ready for at the time. I expressed that fear to my acupuncturist and she said, “If it is endometriosis they’ll just scrape it out when you want to get pregnant. Don’t worry.” #badadvicepeoplegive
It turns out I do in fact have endometriosis. After seven years of pain, two and a half years of infertility, and a failed IVF cycle I sought out an endometriosis specialist. To be honest, I didn’t even realize that an “endometriosis specialist” was a thing; no doctor had ever referred me to one or mentioned that it was something I should seek out. It is difficult to find help for something you are not sure you have. You feel a bit insane. After years of independent research (and the wealth of knowledge I received from those pamphlets along the way…cue sarcastic eye roll) I felt in my gut, both literally and figuratively, that I had endometriosis…but what if it turns out I didn’t? What if it were all in my head?
I became so desperate that I was willing to risk the embarrassment of not having anything “wrong” with me. On April 30th of this year I had my first laparoscopy and an endometriosis diagnosis was confirmed. Endometriosis is a painful disorder in which endometrial-like tissue is found outside the uterus. Symptoms may include painful periods, pain during intercourse, pain with bowel movements or urination, excessive bleeding, infertility, fatigue, bloating, constipation/diarrhea, and/or nausea especially during your period.
Here are some really important facts about endometriosis taken from endofound.org: the exact cause of endometriosis is not known but we do know it is the only known precursor to ovarian cancer; on average, women will suffer at least 10 years before being diagnosed; and federal research dollars amount to only $1.10 per year for each diagnosed woman. (If this information is not shocking, read those facts a second time.) Unfortunately, we don’t know that much about endometriosis not because it is a new disease, but because no one has really cared to investigate female bodies, let alone female pain.
It is only after not being able to do the thing that is expected as a woman—reproduce, carry a child, become a mother—that my pain and fatigue has been considered seriously. I assume partial responsibility for this. I didn’t advocate for myself strongly enough; maybe it was because I was young, ignorant and naïve. But I also believe that, in part, I was conditioned to believe that my pain was invalid and insignificant. I believed myself to be overdramatic. I believed that maybe I just didn’t tolerate pain well. I believed that I should just deal with it. And I was specifically told by a doctor that I was “fine.” Why would I believe otherwise?
So now, after seven years, receiving a diagnosis is surreal. I am overwhelmed and having a lot of emotions that I didn’t necessarily expect. I am feeling strongly about the fact that we need to start discussing our reproductive health in a more honest and productive way. According to endofound.org, 7 million women in the US have endometriosis and women with a close relative with endometriosis are 5-7x more likely to also have it yet 60% of women report that they do not discuss their reproductive health with their family.
My experience with endometriosis is certainly not the worst of it. Many women lose their jobs because their pain is so unbearable they can no longer work. Some women have to have organs such as their fallopian tubes or ovaries surgically removed. Some women have full hysterectomies. And some women lose the ability to ever conceive.
There is a part of me that resists wanting to share my experience not only because it is extremely personal but also because I know that other women have it far worse than I do. But I truly believe that not sharing our experience is part of the problem. Suffering in silence is not a badge of courage. Imagine how much sooner girls and women would be diagnosed if we talked about the fact that period pain is not normal. It is no surprise that we don’t discuss it. I really didn’t. Periods are “gross.” It’s not exactly dinner conversation. And we assume that periods are supposed to be uncomfortable so when someone complains about their period we wrongfully believe we know what they are experiencing.
But here is the difference: if pain is severe enough that someone mentions it, it is severe enough to be taken seriously. Many women go to their doctors and don’t mention their period at all—and that’s likely because, while it may not be the most enjoyable aspect of their life, it’s also not negatively impacting their life. When someone mentions pain, its because its affecting them and they are looking for answers and solutions. So whether it is you or someone you love—your daughter, your sister, your girlfriend or your wife, your cousin or your friend—we need to validate people’s experiences. Tell her that she is not being “too much” or “too dramatic” because she probably believes she is. Tell her its okay to be concerned because it is, in fact, concerning! Tell her that you believe her. Tell her it is a big deal. And help her find the medical care she deserves sooner so that she may not have to endure years of pain, fatigue, possible infertility, or possible surgical intervention that may require removal of reproductive organs.
As for me, I am and will be fine. I am grateful to finally have a diagnosis and the recent procedure should help with both pain and infertility. Rob and I remain hopeful and optimistic that what will be, will be. I am grateful that I have access to information and the resources to afford medical care as well as support from family and friends.
And I am especially grateful to Rob. During our first ever appointment with a fertility specialist last Spring I was asked about my menstrual history. My instinct was to underplay my experience like I always had because I was embarrassed and I didn’t want to be “too much," too overdramatic. Rob immediately picked up on this and respectfully, yet firmly informed the doctor that he believed my pain was severe, not moderate like I had been alluding to. He was a witness to my experience and an advocate for my health…and truly always on my side.
