Saturday, August 1, 2015

D-MER - Breastfeeding's Darker Side

I haven't blogged in a while, but as it's World Breast Feeding week, I decided I wanted to write a post I've been thinking about for, well years.

I want to start by saying I love breast feeding. I love the way I am able to connect with my babies in such a powerful and tender way. I love the sounds of their tiny sucking mouth and the way it slowly lulls them to sleep. I am so grateful I have always had ample milk supply to let them eat to their little hearts content. When my three children eventually self-weened at 18 months, 11 months and 12 months, I cried at the loss of that precious bonding time.

Not that breast feeding is always easy. The first month is very very painful, even though my lactation specialist assured me that my babies latches were good. It just hurts a lot of women. But it is so worth enduring that pain until your breasts become acclimated and nursing becomes second nature.

But for some women, breast feeding takes on a very unexpected, and terrifying aspect.

I remember very clearly, the first time I expected what I then called "the wave". A couple weeks into breast feeding my first baby, Lydia, I felt something very strange about a minute into nursing. I was having a perfectly nice day. Lydia was happy, I was enjoying nursing my squishy little baby in my sunny room. Then, very slowing, I felt an ebbing sensation of dread take over me. I remember staring at the wall in complete terror as every possible emotion of loneliness, anxiety, self-loathing, depression and despair converged on me and held me in it's embrace. I couldn't speak, I could hardly see out of the darkness that had overtaken me. And then, as unexpected as it came, the feeling slowly washed away. And I was left feeling perfectly normal and happy again, though completely bewildered. As if I had just imagined the entire experience. All of this happened within two minutes. I thought I must have gone temporarily insane, but as I felt no residual effects of these terrible moments, I just put them out of my mind.

Until a few days later, when it happened all over again. My sweet moment with my baby swept away by the wave of misery, and then leaving me back in the moment as if nothing had happened. Something was definitely awry.

My first baby was not easy. She cried a lot and did not favor sleep. But even in the very stressful time of new motherhood, I was aware that I was not experiencing postpartum depression. I had none of the symptoms. Even in the stress and exhaustion of it all, I was able to continue normal function and enjoyment of life. I was happy with my marriage, little home and new baby. But "the wave" continued it's assault on my breast feeding.

After several months I made an appointment with my OB/GYN to discuss my experiences with "the wave". I explained first that even though I was sleep deprived and dealing with a very fussy baby, I was emotionally well. I discussed my breast feeding success and how much I enjoyed the lazy afternoons just holding my baby as she ate. Then I told him what sometimes happened to me. How right before my milk let down fully, in the midst of whatever emotion I was feeling, the wave of despair would take over me and hold me captive anywhere from 30 seconds to 2 minutes. I explained the horror of it all but emphasized that once the experience was over, the feelings left me completely. I was not left with any residual feelings of dread. I felt as I had before "the wave" happened.

"Do you feel like you want to hurt your baby?"

"What? No, of course not. When it happens I'm too overcome to even really notice that she is there."

"Do you feel resentful to your baby about your loss of freedom?"

"Huh? No, we tried to get pregnant for two years, I couldn't be more thrilled she is here. This problem has nothing to do with how I feel about my baby."

"Do you find yourself not wanting to get out of bed during the day?"

"I have a new baby. I would sleep all day long if I could. But I get up and do all my mothering duties just the same. It wouldn't matter if I was having a terrible day, or if I was at Disneyland and I had just discovered that I won the lottery and that my jeans fit again. The feelings still happen when I start to nurse."

The doctor considered me for a moment and then told me that he believed I had postpartum depression and would like to medicate me for that. When I explained that I definitely did not have postpartum he just shrugged and said "I don't know what you want me to do for you then".

I left incredibly angry that my doctor dismissed me so completely, and equally as confused at what could possibly be happening to me that an experienced OB/GYN would not have seen in his practice.

Lydia breastfed for 18 months and the barrage of "the wave" just become part of nursing. It only lasted a minute or two, and after than, nursing became lovely once more. So I just endured. My husband understood that when I held my hand up to him while nursing, it meant that I couldn't speak and he just needed to wait until the anguish passed.

My son, Collin, was born a few years later, and a week or so into breastfeeding, "the wave" returned. This time, differently though. Instead of a slowly ebbing wave, it was a powerful rush. It was as if all the color in the world drained and I would never feel happiness again. Every negative emotion converged at once. I remember seeing the Dementors in Harry Potter and yelling "that's what it feels like when I nurse!!!".

My last baby, Elise, was born two years ago. Soon after her birth I was at home, nursing my tiny perfect child. I remember thinking how content I was. Her nursery was full of cheerful treasures I had created for her, or that had passed down from her siblings. She was newly bathed and cozy in the softest jammies. I was touching her delicate skin as she ate. Then the familiar darkness entered from nowhere and overtook me. For two minutes I was bound in loneliness and despair.

NOPE! Not this time. When it finally passed I made a decision that this time I would figure out WHAT THE HELL WAS HAPPENING!

I put the baby to bed and sat at my computer with the resolution I would not stop until I figured this out. I had searched many times before, but this time I did a search on a difference phrase. When trying to explain to my husband what I was experiencing, I called it "the anti-orgasm". So I tried doing a web search. Suddenly I discovered I was not crazy. I was not alone.

I have Dysphoric Milk Ejection ReflexD-MER. 

I discovered other women describing my EXACT symptoms. It was like reading posts I had forgotten I'd written. Down to the exact detail. 

I started screaming and laughing and crying all at once. I called my husband. "I have Dysphoric Milk Ejection Reflex!!!! The anti-orgasm! It's a real thing!!! I'll explain when you get home, I need to read some more blogs!"

I cannot express the joy I felt in knowing this is a real medical condition. And also the anger at the several doctors who dismissed me.

This is what I learned about D-MER

Dysphoric Milk Ejection Reflex is a condition affecting lactating women that is characterized by an abrupt dysphoria, or negative emotions, that occur just before milk release and continuing not more than a few minutes.  It is caused by an inappropriate dopamine activity at the time of the milk ejection reflex.

Dysphoria is defined as an unpleasant or uncomfortable mood, such as sadness, depressed mood, anxiety, irritability, or restlessness. Etymologically, it is the opposite of euphoria.

D-MER is not a psychological response to breastfeeding.

D-MER is not nausea with letdown or any other isolated physical manifestation.

D-MER is not postpartum depression or a postpartum mood disorder.

D-MER is not a general dislike of breastfeeding.

D-MER is not the "breastfeeding aversion" that can happen to some mothers when nursing while pregnant or when nursing older toddlers.

  • D-MER is like a reflex. It is controlled by hormones and can not be controlled by the mother. She can not talk herself out of the dysphoria.
  • Dopamine is known for having an effect on moods and in a mother with D-MER dopamine is behaving somehow inappropriately in its drop. It is in this very quick and immediate drop that a mother with D-MER feels her dysphoria. As dopamine levels restabilized, the dysphoria is gone. 

Finally understanding what was happening to me allowed me to continue to breastfeed my baby without fear and confusion. When my dopamine levels plummeted during letdown, I waited for the despair to pass, understanding what was happening to my body. When I brought up D-MER to my new OB/GYN she said she had only heard of it in passing. She has been practicing for over twenty years. 

THIS IS SOMETHING NO WOMEN SHOULD HAVE TO EXPERIENCE WITHOUT UNDERSTANDING WHAT IS HAPPENING TO HER. Countless women over countless generations have experienced this terrible feeling alone. Nothing should diminish the beauty of breastfeeding. Especially not unawareness. 

There are wonderful handouts available on D-MER.ORG for lactating women, their loved ones and their doctors. No one should be afraid of breastfeeding. 

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