This Rare Condition Makes Breastfeeding Emotionally and Physically Painful
I knew I intended to breastfeed early on in my first pregnancy. But the journey was much more difficult than expected. As a Black mother, breastfeeding was about so much more than a “choice” of food; looking at our higher rates of infant mortality, and socioeconomic barriers to quality care, to me it was a necessity. So I powered through challenges that made me question myself daily, like a delayed latch, health issues, and lack of social support. But something still felt off.
There were moments nursing seemed to hurt emotionally, and I’d feel sadness and hyperactivity while feeding. I also noticed that many mothers reported being famished during nursing, but to me the thought of eating while feeding was enough to make me feel sick. I didn’t know what to search to figure out what was wrong, and everything I read about postpartum depression didn’t seem exactly accurate. Before I knew it, nursing, particularly on my right side, made me anxious. So much that I stopped searching for information, and succumbed to what was. Somehow we made it about a year and a half with me muscling through. Then, when I found out I was expecting a second child, I was instantly fearful about breastfeeding again.
This time, my daughter latched right away and I was hopeful things would be different. Within a few weeks, I started having a familiar icky feeling right before a letdown. Sometimes, I’d feel like crying even when I had just been smiling. Or it felt like my heart was about to beat out of my chest. Desperate for answers, I took to Google again, and tried a new combination of words: “anxiety during letdown.” For the first time, I landed on explanations that let me know I wasn’t alone. Soon, I even had a name for what I was feeling: Dysphoric Milk Ejection Reflex, or D-MER.
What Is Dysphoric Milk Ejection Reflex (D-MER)?
According to a case report written by Alia Macrina Heise, IBCLC, who coined the term, “Dysphoric Milk Ejection Reflex (D-MER) is an abrupt emotional ‘drop’ that occurs in some women just before milk release and continues for not more than a few minutes.”
Her research of D-MER, began after she experienced it while nursing her third child. When she started, very few people were discussing the rare condition. It’s been 12 years, and now her website, D-MER.org is the only website dedicated to all things Dysphoric Milk Ejection Reflex. It means the world to many, including myself.
She’s also developed resources for nursing parents, support foks, and professionals that explain how to live with or support someone struggling with D-MER.
In an interview with La Leche League, she noted the condition was believed to be explained by the following hormonal changes: “When a milk release is triggered, the oxytocin level shoots up, and separately — but in response to the same milk release trigger — dopamine makes an abrupt but brief drop. Since dopamine is a gatekeeper that blocks release of the milk-making hormone prolactin, we know dopamine has to drop to allow prolactin to rise.” While Oxytocin is sometimes referred to as the “Love hormone,” and it’s what makes many moms feel all warm and cuddly while nursing, dopamine is the hormone that negatively affects mood if it changes too quickly.
Macrina Heise highlights important information on how the condition presents on D-MER.org.
“The negative emotions, or dysphoria, that a mother with D-MER experiences often manifest ‘in the mother's stomach’ — a hollow feeling, a feeling like there is something in the pit of the stomach, or an emotional churning in the stomach. Mothers report varying types of emotions with D-MER ranging from sadness and dread to anxiety to anger, these emotions fall on the D-MER spectrum which has three different common experiences,” the site says.
Some signs to look out for that might point to D-MER are having an intense wave of negative emotions that returns with each letdown. One of the most often discussed symptoms is a ‘hollow pit’ in the stomach. During these moments, one might freeze or suddenly have a huge shift in emotion and seem frustrated or sad without explanation. Unlike with more pervasive issues, the discomfort will be brief but occur somewhat regularly.
D-MER vs. PPD — How to Tell the Difference
Stacey Smith, who resides in the South Coast of New South Wales, Australia had D-MER with her second child. She noticed negative feelings with her second child that weren’t present with her first, particularly at the start of a feeding. Initially, she had concerns that it was PPD. Thankfully, she had a doctor who was familiar with the condition. “I think people need to know the difference between D-MER and depression because they are really different. In my experience [D-MER felt like] not enjoying breastfeeding, going silent when starting to feed, and showing signs of anxiety or sadness, all before letdown.”
Those who are uninformed may mistake D-MER for PPD or nursing aversion, but the cause and expression are quite different. Macrina Heise highlights that the dysphoria experienced during letdown “is physiological not psychological,” meaning that hormones, not thought patterns, are responsible.
PPD can develop as a result of a number of things, including birth trauma — D-MER does not. As far as we know there is no trigger. Mothers with D-MER feel “normal” between episodes; PPD is much more complex and pervasive That’s not to say one can’t have PPD, nursing aversion, or some other conditions in combination with D-MER.
Christina Standridge a mom of three, who lives in Connecticut, often has D-MER episodes that lead to overwhelming feelings of panic. A seldom understood aspect of D-MER is that the letdowns, not the act of nursing itself, trigger the feelings of discomfort. That is why the negative feelings are brief.
“I could be extremely happy, playing with my older two, cleaning, or driving. And then a feeling of doom rushes over my mind and body like something terrible was going to happen or that I am not capable enough to take care of all three kids,” says Standridge while describing what happens when her letdowns hit.
In those moments, she says she feels physically and mentally uncomfortable, often feeling shaky, tingly limbs, lightheadedness, or tightness in the chest. In mild cases of D-MER, like mine, it can feel like 30 seconds to a minute of discomfort leading up to a letdown during which I’m very irritable and easily frustrated. I’ve also found that my spontaneous letdowns — those that happen on their own instead of when being stimulated by an infant or pump — are typically worse than those caused by a feeding.
There’s so much we don’t know about D-MER. Both its prevalence and its risk factors are unclear, and need further research. “In the 2,500-plus women that I’ve encountered with D-MER, I have not found one single common denominator that connects them,” Macrina Heise says. “I haven’t found anything yet and I wonder if we will.”
Danika Severino Wynn, CNM, IBCLC with Maven, echoes that frustration. “It frustrates me that experiences like D-MER are so under researched. In fact, there are so many subjects in women's health, especially within the perinatal experience, that lack answers and information. I hope that continuing to bring these issues to the forefront and reminding folks that pregnancy and the postpartum period are normal parts of our life cycle will allow for more funding and research,” she says.
She highlights the importance of starting breastfeeding education as early as possible — preferably during pregnancy — and not overlooking the importance of making it collaborative for the entire family. This way, should issues arise, parents are prepared to adjust their plans, or call in help.
“D-MER is rare but can be a really harsh experience. I also want them to be aware of any postpartum mood disorders that could occur and know what signs and symptoms to watch out for and who to call if they are experiencing anxiety or depressed mood,” she says.
Is there any treatment for D-MER?
Macrina Heise is adamant that the key to treating D-MER and other emotionally distressing perinatal conditions is listening to mothers and believing them when they say something is wrong. She points out that this is particularly important since there is so much medical professionals don’t know about the condition.
“It’s not helpful for professionals to believe they know all the answers,” she says. She also believes that romanticizing the nursing relationship unintentionally silences those who are struggling. She describes how the “breast is best” movement can marginalize those who need help the most. Wynn has similar criticisms.
“We have these visions of having a beautiful birth, having baby placed skin-to-skin, and then the baby immediately latching. It's all rainbows and unicorns in our minds and in media when, in fact, it's can be very challenging to develop a breastfeeding relationship,” she says. But she also notes the importance of assessing one’s situation to determine when it’s time to end the breastfeeding journey.
The key to improving one’s experience with D-MER is doing things that increase dopamine. Exercise, getting sleep, and certain prescriptions are some of the few options listed in Macrina Heise’s book Before the Letdown: Dysphoric Milk Ejection Reflex and the Breastfeeding Mother. There’s no known cure but symptoms often decrease over time and disappear upon weaning.
Being validated does wonders for most. Online groups, such as Macrina Heise’s D-MER Facebook group, can offer that connection. Standridge, an aspiring art therapist, has found painting to be a useful coping tool, as well as seeing a professional counselor who specializes in postpartum depression and postpartum anxiety in hopes of getting more coping tools.
One mom of five told me she gets through nursing sessions with D-MER by reminding herself that the discomfort is temporary, and she’ll try walking and swinging to take her mind off of it in the moment. Another says she found relief through changing her diet to increase dopamine, and refuses to let brief discomfort rob her of an otherwise enjoyable nursing experience.
I’m nine months into what I hope to be two years of breastfeeding my daughter. D-MER has been an unexpected roadblock in the process. But I’ve found that locating a community and learning more about what’s causing my symptoms is helping me. Somehow, knowing that I’m not alone and what to expect has made things more manageable. My breastfeeding journey isn’t easy. But for me, it’s been worth it.