More Than Just Cramps: Three Women’s Stories on Menstrual Pain and Barriers to Period Peace

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Throughout this series on women’s reproductive care, we often identify women as people with biologically-female anatomy, such as a uterus, a vagina, and ovaries. However, we acknowledge that people with this anatomy identify as other genders, that having this anatomy does not necessarily mean a person is a woman, nor is it a prerequisite for being a woman. 

Think back to the first time you got your period. How did it make you feel? Were you excited, happy, nervous, embarrassed, or ashamed? Did you rush to tell your best friend or your mom? Did you keep it secret, hoping no one would ever find out? Were you prepared with a menstrual product ready-to-go in your backpack? Did you frantically wad up some toilet paper and hope it would stay put in your underwear? Did you sheepishly ask the nearest adult woman if she could give you a pad? 

For every girl, beginning to menstruate marks a significant change in life. Some people call it the beginning of womanhood, some call it the end of puberty, some (sadly, still) call it ritual uncleanliness, some call it just the start of monthly bleeds. But for nearly every woman, beginning to menstruate marks the beginning of some cyclical discomfort in our lives, whether it be societally-imposed or medical in nature. 

The reality is, however progressive or feminist the U.S. touts itself to be, it is still incredibly unwilling to get real about menstruation, both on a collective and individual level. 

Think of how pads and tampons are advertised on TV: attractive, young women are seen running up sets of stadium stairs or holding splits in yoga class. Next, a blue or purple liquid is poured onto a pad to show its absorbency and flexibility. Is this supposed to be menstrual fluid? It looks like dish soap. Or think of how pads, tampons, and menstrual cups are labelled in your local pharmacy – “feminine products” – a term vaguely reminiscent of the stereotypical catchall “women’s troubles.”

Think of all the times and creative ways you tried to keep the fact that you were on your period a secret. How can I discretely grab this pad from my bag, so no one will see? How can I open this tampon wrapper, so no one will hear? If I pile tissues over this used pad in the trash, no one will know!

Undoubtedly, it is every woman’s right to keep information about their periods private. The uterus and vagina are private, so logically, this function might also be kept private. However, have you considered why you felt like you had to keep quiet about it? Were you embarrassed for someone to know you were menstruating? Were you worried about being ridiculed, judged, or dismissed for being on your period?

Menstrual Stigma

For some women, menstruation is a powerful event. By all means, it should be! Take a moment to think about how amazing menstruation is: your body gathers the resources to grow another human being, and when it realizes that this isn’t going to happen this month, your uterus releases itself of this unneeded resource and prepares to start over again. What makes this event even more powerful? That over half the people on the planet currently or will eventually experience it. 

So, if periods are universal and natural, why is it so hard to speak openly about them?

Nearly every major world religion has, at some point in history, associated menstruation with uncleanliness or weakness. Menstruating women were banned from going out in public, participating in worship, or entering holy places. Some places worldwide still ban menstruating women from participating in certain activities. Although these examples are extreme, they demonstrate the heavy burden of shame and unworthiness which cultural stigma places on the female psyche regarding menstruation.

In addition, menarche (the start of menstruation) and menstruation itself are also associated with unwanted identifiers placed upon women. In many cultures, historically and currently, menarche was associated with sexual maturity and a readiness to marry and bear children. Thus, menstruation became an event which could thrust a young woman, with or without her consent, into a sexual relationship and motherhood for which she may not be ready. 

In addition, menstruation has also been misogynistically used to stereotype women as being less reliable and more emotional than men. Women expressing human emotion may be called out for undergoing “that time of the month” – a euphemistic and patronizing phrase which reduces women to mood swings and delegitimizes their voices. In addition, menstrual synarchy, the debunked idea that groups of women will gradually adopt the same menstrual cycle, has been adopted in popular thought. This idea that female community may cause some sort of chemically-driven collective hysteria further disrespects women as being little more than their sex hormones.

Societally-imposed and internalized stigma have taught women to keep quiet about their periods for fear of embarrassment, judgement, or even dehumanization. These beliefs make for a very dangerous environment – one where women may sweep problems relating to their periods under the rug and risk extending their own suffering or missing a potentially serious problem.

There’s a reason why every time you go to the doctor, you are asked about your period – for women of menstrual age, this is a significant marker of health and well-being. You can have irregular periods or stop menstruating altogether due to weight changes, hormone imbalances, stress, excessive exercise, too little body fat, polycystic ovary syndrome, and more. An irregular or painful period can be a sign of ill health, and as such, it must be listened to. 

We will explore the stories of three women, Lily, Mary, and Emily, all of whom consider menstrual irregularity or pain to be a prominent part of their lives. In doing so, we hope to add to women’s continual work to eliminate period stigma, as well as motivate people with periods to approach their menstrual health as a crucial part of their overall health. 

— Lily —

Lily is a 21-year-old college student studying psychology and anthropology. With a passion for protecting vulnerable populations, Lily is known for her empathy and care for others.

Lily got her first period at 12 years old, and soon after, she felt that something was not quite right. Periods seemed to hit her harder than it did for her sisters and friends, producing a lot of pain, fatigue, anxious thoughts, and a depressed mood. 

Flash forward three years later, when something completely unpredictable happened in the days leading up to Lily’s period. During a cold run, 15-year-old Lily began to feel strange: her palms and the tops of her feet got itchy, she felt her face get hot and puffy, and she experienced extreme nausea and abdominal pain followed by uncontrollable vomiting and diarrhea – all while on the side of a public road. Soon after, Lily lost consciousness. Luckily, her sister was a few minutes behind on the run, and she was able to flag down a car so that Lily could be driven to the hospital. 

So, what was the cause of this episode? Lily still does not know for sure. She has heard that it was just a fluke, that it was just bad period symptoms, or that it was exercise-induced anaphylaxis. 

She recounts, “people would say: ‘I understand that you threw up and that you were dizzy – I think it’s just cramps,’ and I was like, ‘it’s not just cramps!’”

“I didn’t feel heard whatsoever. I didn’t feel like doctors had time to figure out what was going on, because they had to see patients like this [snaps her fingers].”

In the end, Lily’s parents became her fiercest medical advocates. Lily’s mother, a practicing physician, made her feel as “safe and comforted as possible.” Although a trained physicist, Lily’s father ceaselessly pursued a medical basis to his daughter’s episodes. 

She now knows that she has a hypersensitivity to progesterone, a sex hormone which peaks in the female body in the days preceding menstruation, and she can expect at least one of these episodes every year that she menstruates. 

“For some reason, the combination of exercise and progesterone makes my body go into anaphylaxis if I exercise hard enough.” Needless to say, this makes the days before Lily starts her period incredibly nerve-wracking for fear that she may have another episode. 

Not only do these episodes bring a host of physical symptoms, they also induce feelings of existential dread. Lily describes feeling as though she is going to die whenever she has an episode, so much so that she has trained her mind to handle this sense of impending doom. She recalls: “during my first episode, I literally thought I was dying because I had never been in that much pain before. Now, I’m like: the next time it happens, I am going to be ready, and I am not going to be scared. I’m going to say my Hail Mary’s and my Our Father’s.” 

So far, Lily’s treatment options have remained one-dimensional, with physicians consistently suggesting hormonal birth control as the best, and only, option. Ideally, Lily would suppress menstruation entirely, so she would never run the risk of having another episode. However, this option does not sit well with her. 

She explains, “having a period is important to me, because I like the idea of flushing things out. I have never liked the idea of taking birth control to stop the episodes from happening. I felt like suggesting birth control was the easy way out, to be honest.” 

Presently, Lily needs to take Zyrtec daily to prevent her body from overreacting to progesterone, as well as carry an EpiPen in case she experiences a particularly bad episode. Lily is still looking for answers. 

— Mary —

Mary is a 26-year-old woman working at the crossroads of technology and health, aiming to get a Master’s or start a PhD in the next few years. In the future, Mary wants to work in maternal-fetal health care, effecting positive change for both mothers and infants. A talented and committed runner, she hopes to compete in the next Olympic trials.

However, Mary’s running dreams have not always meshed well with having a typical period. In order to maintain the level of running she wants, Mary must also maintain a low body weight and low body fat, two factors which can exacerbate menstrual irregularity or cause amenorrhea (the absence of a period). Distance running can also induce anemia or low blood iron, which can also stop menstruation. Mary is no stranger to these symptoms. 

After having her first period at 13, Mary had periods irregularly until she turned 17, when she finally started menstruating every month. But shortly after turning 18, Mary’s periods stopped. For the next six years, Mary did not have a single period. 

This six-year timeframe occurred simultaneously with the peak of Mary’s distance training, when she demanded more of her body than ever before. However, Mary was always acutely aware and troubled by her lack of menstruation.  She recalls, “I got different messages from various groups in high school and in college, saying: ‘you’re an athlete, it’s pretty normal not to get your period,’ but I didn’t feel like I was fully healthy.” 

Mary was never comfortable with not getting periods, however explicable her distance running made their absence: “to me, having a period means health and the potential to have a family. I didn’t know if I could ever support a pregnancy, because I didn’t know if I could ever have a period naturally,” she says. 

Nervous about her amenorrhea, Mary tried what she could to jumpstart monthly bleeds. She supplemented with iron, put on muscle mass, and purposely gained 10 pounds, a significant amount for her 100-pound frame. However, given her commitment to and love of running, Mary was soon trying to balance gaining and losing weight, to try to restart menstruation and maintain her running level. 

“These competing interests were a source of conflict in my life for a long time.

It got to the point where I was simultaneously trying to gain and lose weight at different times of the day, which was really difficult. I had this resource equation going on in my head – is there enough of this thing in my body to support this thing I’m supposed to be having. It was like input, output, and it made for a busier mind.” 

Eventually, Mary decided to consult an OB/GYN about starting hormone therapy an appointment which she had long been dreading. In the end, she was placed on hormonal birth control and her periods returned.

Their return, however, has not yet settled Mary’s mind entirely: “there’s still a part of me that’s like, could I do this on my own? I’m happy I have my period now, but it’s not something I take for granted. I’m not sure how I am going to proceed in the future when the time [to have children] is right.”

Exploring Endometriosis

Emily is a lively and engaging 25-year-old professional with a great sense of humor. She works for the state of North Carolina and is heavily engrossed in philanthropic activity. When you speak with her, you are immediately put at ease. 

Emily has also struggled with menstrual pain and eventually, endometriosis, for every one of her periods since she was 13 years old. On some occasions, she has had such severe pain that she has vomited, passed out, or lost the capacity to walk or stand. To better understand Emily’s story, as well as the experiences of the 10% of all women who live with endometriosis, let’s explore this condition. 

What is endometriosis, and what are the symptoms?

The American College of Obstetricians and Gynecologists (ACOG) states that endometriosis is a condition where tissue from the lining of the uterus exists outside of the uterus. Endometrial tissue can be found anywhere in the peritoneal cavity (the space between abdominal organs) but most often grows on the ovaries, in the fallopian tubes, or on the surface of the uterus, bladder, intestines, or rectum. 

This misplaced endometrial tissue responds to changes in hormones, causing it to breakdown and bleed, just like typical uterine endometrial tissue. This can irritate and inflame the surrounding tissue or major organs. In addition, the cyclical breakdown and bleeding may cause scar tissue to form, which can cause organs to “stick together.” The combination of bleeding, inflammation, and scarring can cause an enormous amount of pain. 

According to ACOG, the most common symptom associated with endometriosis is chronic pelvic pain, especially before or during menstruation and sometimes during sexual intercourse. Because endometrial tissue often attaches to the intestines or bladder, gastrointestinal and urinary symptoms also are common in women with endometriosis. According to the ACOG, a study of adolescent girls with laparoscopically-diagnosed endometriosis indicated that 56% of patients reported at least one gastrointestinal symptom, and 52% reported at least one genitourinary symptom. 

Endometriosis is also a leading cause of infertility. In fact, ACOG reports that 4 in 10 women with infertility also have endometriosis. Inflammation and scarring may damage the egg or sperm, or block the route between the egg and sperm, preventing conception from taking place. 

How is endometriosis diagnosed?

The Endometriosis Foundation of America cites laparoscopic evidence as the “gold standard” for diagnosing endometriosis, which means that getting this diagnosis is hard work. 

This definitive laparoscopy is achieved by making 2-4 incisions into the abdomen and pumping the abdomen full of sterile gas, so that doctors can achieve a better view of the entire area. Doctors then use a laparoscope to examine the tissue and organs in the peritoneal cavity. If suspicious tissue is found, it can be biopsied and examined by a pathologist to determine if it is endometriosis or not. 

Other methods, such as transvaginal ultrasounds, sonohysterography, CT scans, and MRIs can be used to support a suspected (albeit not definitive) diagnosis of endometriosis. 

However, given the prevalence of endometriosis among women, as well as the heavy burden of the disease, OB/GYNs have begun to diagnose and treat endometriosis after consultation and clinical history-taking alone. In short, if a doctor decides that a woman’s symptoms sound like endometriosis, it can be treated like endometriosis. 

According to ACOG, most women are not diagnosed with endometriosis until they are in their 30s and 40s, at which point they likely have been dealing with pain for years. The recent deemphasizing of laparoscopy in the diagnosis of endometriosis has allowed women to seek treatment earlier than in the past, sparing them from years of needless pain. 

How is endometriosis treated?

Symptomatic endometriosis treatment falls into three main categories: medication, conservative surgery, and definitive surgery. 

According to ACOG, for mild endometrial pain, non-steroidal pain medications, such as ibuprofen and naproxen, can often be used to manage symptoms. However, for moderate to severe pain, physicians may use oral contraceptive pills (OCPs) to suppress periods, thus preventing endometriosis tissue from being able to react to hormonal cues with a pain response. The Depo Provera shot, GnRH therapy, and Lupron Depot (an injection that induces medical menopause), may be considered as treatment if pain cannot be managed with OCPs alone. 

In addition, according to the Endometriosis Foundation of America, conservative surgery, or the process in which endometriosis lesions are surgically removed while leaving organs intact, is the “gold standard of treatment for endometriosis.” 

However, according to ACOG, many women will continue to experience pain after laparoscopic surgery. In fact, 8 in 10 women will have pain again within two years of this surgery, likely due to endometriosis that was not seen or could not be removed at the time of surgery. 

According to the Endometriosis Foundation of America, definitive surgery is considered when there is “diffuse involvement of endometriosis to a particular site.” Definitive surgery involves the removal of organs. Most commonly, a hysterectomy (removal of the uterus) is performed. Because this treatment is irreversible, it is often thought of as a “last-ditch” effort to decrease endometrial pain if prior interventions have not been successful. However, due to the diffuse nature of endometriosis, removing the uterus may not completely rid of woman of endometrial tissue, which leaves the possibility for pain even after a hysterectomy is performed. 

— Emily —

As soon as Emily got her first period, she knew something was wrong. 

“I physically passed out,” she recalls, “the pain was unbearable. I couldn’t eat for days, and I missed school.” 

When Emily did attempt to brave school in the face of extreme pain, she was denied help from her school’s health care professional, who told her: “I can’t excuse you from class for having a period – that’s sexist.”

After gritting her teeth and bearing pain for years, Emily decided to consult an OB/GYN at 16 years old. She prepared for the appointment and told the doctor that she believed she had endometriosis. The doctor then preceded to press on her stomach, concluding: “you’re so skinny, I would be able to tell if there was endometriosis in there.” 

At another appointment, Emily also brought up the fact that she was only having two periods a year, instead of the typical thirteen. The response: “you’re probably just anovulatory. We can deal with that once you want to get pregnant.”

These belittlements and microaggressions have stuck with Emily, who now has lived with endometriosis for more than a decade, and still does not know why she only has two periods per year. 

“I’m so sensitive to people dismissing it now, because I’ve been told for so long that I will just be in pain… It has been dismissed before as being all in my head or just part of ‘being a woman.’”

Over time, Emily has taught herself to stay quiet about her endometriosis: “I have to over-explain at this point if I even want to talk about it. When I say I have chronic pelvic pain, people ask me what that’s like, and I just don’t want to talk about it! It’s an intense question to answer, and I also run the risk of people saying it’s not that big a deal.” 

When I first asked Emily to describe her pain, she was nearly lost for words. “It’s like,” she said slowly, “it’s like a pain that demands your attention.”

She described how the pain begins centered on her left ovary then radiates outward across her entire pelvis. More often than not, the pain comes on without warning, leaving Emily in vulnerable, and potentially dangerous, situations. She describes how, while walking through the house, she will suddenly “double over and need to grab something to stay upright,” or if it hits while driving that “the wind will leave [her] lungs” and it takes all she has to stay concentrated on the road until she can pull over.

Once the pain begins, it will not go away for hours, and Emily will “just have to go to sleep, because otherwise [she’s] awake and suffering.”

The suffering does not end when the pain subsides, either. Emily describes that “after the pain is [also] extremely exhausting. It takes everything out of you. Once you have had those moments where you have to be lying down because the pain is so intense, your body is so exhausted from that trauma that it’s difficult to be a person again.”

For Emily, medical investigation and treatment have been particularly difficult. After having to stop the only medicine that was working for her for risk of blood clots, a physician advised her to consider a hormonal IUD. As a survivor of sexual abuse, the pain from the IUD insertion caused an anxiety attack: “it was an extraordinarily painful and traumatic process for me… I cramped up really badly, my body temperature dropped dramatically, and I threw up.” 

Even with the IUD, Emily’s pain persists and conversations with her doctors are often unfruitful and frustrating: “I’ve been to several OB/GYNs in the area and every time we go through [potential treatments] I’m like ‘yes, I tried that; yes, I tried that.’”

For Emily, the biggest struggle with endometriosis occurs at the hands – and words – of others, who repeatedly deny her reality or ask for proof: “it feels like I really have to justify my needs and where I draw my boundaries for other people. It’s like [people saying] ‘your needs are so abnormal and excessive and extreme that you have to prove to me that your pain is the biggest part of your existence, in order for me to be comfortable in providing you with these accommodations. Help me trust you by sharing your most vulnerable experiences…’ – instead of people just trusting me.”

Emily has set her sights on a laparoscopic intervention, where a doctor will visualize, and hopefully, excise, endometrial lesions through surgery. A physician can then finally, definitively diagnose Emily with endometriosis, a condition which she is already certain she has. 

Reckoning with Menstruation

Historically and currently, irregular and painful menstruation has been labelled as taboo, weaponized against women, and habitually overlooked in health care. In a world that truly accepts menstruation as a natural and healthy process, every person with a period could develop a positive, or at least neutral, relationship to the function. However, our world does not truly accept menstruation, and this reality allows for unnecessary risk and harm to plague people with periods. 

According to an ACOG study, over 50% of women report that their periods are a painful experience. Although, more research needs to be done to fully understand the mechanisms behind elevated menstrual pain, it likely has to do with two types of chemicals that mediate inflammation. These chemicals, prostaglandins and leukotrienes, the same molecules responsible for pain, fever, and allergic reactions, are elevated in people with painful periods. The bottom line – the pain is not just in a woman’s head. 

While having painful menstruation is common, it’s not necessarily normal. A normal period is one that does not interrupt your life, other than having to remember to buy period products and using the bathroom a little more frequently for a few days per month. You shouldn’t lose sleep; you shouldn’t miss work or school; you shouldn’t feel ill. 

Women have been taught to grin and bear their way through decades of menstrual pain. More research needs to be done on treatments for the causes behind period pain, but many interventions currently exist. The bottom line is, a woman will know if she is in pain and should be free to address that pain through any appropriate measures.

Until then, how much longer are we willing for women to suffer in silence? 

 

Next Article: December 10th – Hysterectomies

 

What Can You Do?

  1. Ask the people you trust what would be helpful to know about menstruation. On the other hand, support the women in your life by being willing to speak openly about menstruation. 

  2. Remind the girls in your life that periods are not dirty or shameful.

  3. Remember that you are always the right age to look after your menstrual health. Never allow someone to tell you that you are too young or too old to express concern about your periods.

  4. If you have not already, establish care with a Primary Care Physician (PCP), such as an Internist or a Family Medicine Physician, and an Obstetrician-Gynecologist (OB/GYN) who you trust. Once you establish this relationship, try to see the same doctor every time you visit – continuity is key to good care! 

  5. Come to OB/GYN visits prepared: have a list of questions you would like answered, explain any research you have done on your own, ask about all treatment options so you can weigh the costs and benefits, and make sure you understand everything your doctor tells you. 

  6. If a doctor or nurse needs to see another patient before you feel satisfied with a medical visit, tell them that you still have more questions or concerns, and inquire about the best way to address these. 

  7. If you are worried about being dismissed by a health care professional, come to appointments with an advocate – your mother, your sister, your partner, your friend – who is willing to stand up for you. 

  8. If your menstrual pain is affecting your quality of life, tell your doctor.

  9. Treat and prevent period discomfort with these protective behaviors:

    1. Partake in gentle exercise daily (such as walking, swimming, or yoga).

    2. Sleep enough (this means 8+ hours!) during the nights leading up to and around your period.

    3. Avoid foods that could make you feel bloated, such as high-sodium snacks, carbonated drinks, cruciferous vegetables, or refined carbohydrates during your period. 

    4. Apply heat to sore areas, such as your stomach, lower back, or buttocks.

If these behaviors are not enough to prevent pain, consider talking to a nurse or doctor. 

  1. If you are sexually active, get tested for STDs/STIs every 6 months. This can sometimes help rule out causes of pelvic pain aside from menstrual conditions. 

  2. Support organizations like The Endometriosis Foundation of America

 




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