Thursday, February 22, 2018

Lena Dunham & making tough reproductive choices

I should start by saying that, while I know who Lena Dunham is, and that she is a somewhat outspoken & controversial celebrity figure, I have never watched an episode of "Girls" or formed my own opinion about her. I had heard about her struggles with endometriosis, and that she recently had a hysterectomy to try to resolve the problem permanently.

I just read Dunham's essay about her experience from Vogue magazine. I have never had to deal with endometriosis (although I have wondered, sometimes...), but there was much in her article that was familiar -- from the doctors who held out hope even as Dunham herself knew better, to coming to the end of a long-held dream, only because the pain (physical for her, emotional/mental for me) of hanging on got to be too much, to making a "choice" that creates a new kind of pain at the same time that it resolves another kind.
But I know something else, too, and I know it as intensely as I know I want a baby: that something is wrong with my uterus. I can feel it, deeply specific yet unverified, despite so many tests and so much medical dialogue. I just sense that the uterus I have been given is defective. 
And while I’ve been battling endometriosis for a decade and this will be my ninth surgical procedure, no doctor has ever confirmed this for me. They’ve told me I have a slightly higher chance of miscarriage. They’ve told me not to wait forever to “get it going.” But through the 40-plus vaginal ultrasounds where I’m forced to stare at the black emptiness of my uterus, they say things like “Look at those egg follicles! You better be careful or you’ll have a baby next week!” Their goal is to preserve my fertility. That is what they consider to be their job. And I laugh and smile, but I know that the blank space, the black hole that is an empty womb captured on-screen, is all I’ll ever see...
In the operating room the lovely Haitian anesthesiologist, Dr. Lallemand, lets me select a favorite Rihanna song, and I try to absorb the gravity of the moment—at least a dozen people dressed in blue scrubs with face masks, the fact that I could run right now but instead I am choosing to stay, choosing this. I have to admit I am really choosing this—I gave up on more treatment. I gave up on more pain. I gave up on more uncertainty.
Dunham's hunch about her uterus was vindicated by the results of her hysterectomy:
I wake up surrounded by family and doctors eager to tell me I was right. My uterus is worse than anyone could have imagined. It’s the Chinatown Chanel purse of nightmares, full of both subtle and glaring flaws. In addition to endometrial disease, an odd humplike protrusion, and a septum running down the middle, I have had retrograde bleeding, a.k.a. my period running in reverse, so that my stomach is full of blood. My ovary has settled in on the muscles around the sacral nerves in my back that allow us to walk. Let’s please not even talk about my uterine lining. The only beautiful detail is that the organ—which is meant to be shaped like a lightbulb—was shaped like a heart... 
Because I had to work so hard to have my pain acknowledged, there was no time to feel fear or grief. To say goodbye. I made a choice that never was a choice for me, yet mourning feels like a luxury I don’t have. 
She still holds hope of having children, perhaps via egg freezing,  perhaps via adoption. I wish her luck.

*** *** ***

I came to Dunham's essay in a roundabout way, via an article from Slate:  "The Only Certainty in Reproductive Health Is Uncertainty."  "As a gynecologist, I am grateful whenever celebrities publish articles about their reproductive health,"  writes Anna Reinart.
These women, whose lives and bodies are already the focus of incredible public scrutiny, are laying bare one of the most private and vulnerable aspects of their life—all for the sake of raising awareness about a medical condition they share with other women...  
They also tend to receive a hefty amount criticism for doing so. Dunham’s piece certainly did, which is unsurprising, since her story highlights some of the most uncomfortable themes that I’ve encountered as a women’s health care provider—namely, the issues around reproductive self-determination and the capacity for informed consent.
(I am hearing here all the echoes of "Oh, don't give up!!" and "Have you tried/thought of...?")  I had an "ah-ha" moment of recognition/deja vu when I read:
At the core of the impulse to question Dunham’s choice is the myth that if women just try hard enough, they can achieve reproductive self-determination. We all want to believe that Lena Dunham has the ability to conceive and carry the pregnancy that she eloquently describes herself as having always dreamed of. We all want to believe that she has a right to parent the biologic children that she desires. But in the fight for women’s reproductive freedom, in our efforts to remove external constraints on women’s reproductive choices, we have forgotten the one internal constraint over which even medicine is often powerless: biology... I have comforted women suffering through [various fertility-related scenarios], trying to reconcile her long-standing belief that she had control over her reproduction with the reality imposed by her biology.
Reinert concludes:
...many times, there are simply no good answers. So before you judge Lena Dunham, yourself, or anybody else for the decisions they have made about their reproductive health, remember—we have influence, but not control over our biology. We can hope for the best, but we can’t expect it.
I've cherry-picked the passages from both articles that spoke most directly to me, but I encourage you to read them both in their entirety. And let me know what you think.


  1. I read Lena Durham’s article and wanted to scream while reading the paragraph of everyone telling her she was right. How did every single one of her doctors miss that her uterus was deformed?!?!? How did they miss the retrograde bleeding?!?!? I guarantee if this was happening in her brain or her heart, lawyers would be lining up for the pending malpractice lawsuit, but because it’s her reproductive organs they all encouraged her to reconsider until they had her uterus stating them in the face.

    How is this even right?

    I agree with you: there’s this assumption we have control over biology. From planning pregnancies to having birth plans, people tend to forget that biology is the ultimate decider. And I think that scares many because it means we really aren’t in control.

  2. I just read it. I had to run to the bathroom to hide my tears.

  3. Oh, wow. I will have to read the articles in their entirety another day as I suspect it will make me more than a little sad, but how freaking empowering for her to be able to make her decisions in the face of all the hope peddling when she KNEW it wasn't right. And I so agree with Cristy -- that's a HUGE list of problems that they found when they removed it -- what the eff is up with women's health when the best way to diagnose a multitude of uterine abnormalities is apparently an organ post-mortem? So messed up. Did no one give her an HSG or SSG or any of those tests beyond ultrasound? Seems crazy that she suffered for so long and her doctors were in the dark about so much. Jeezum. I can't imagine (well, I guess I can) how people could judge her for such a decision. I loved what she said, that she gave up on pain and gave up on uncertainty. Those sound like giving up cigarettes, or heroin -- definitely things worth giving up! Thank you for sharing, and thanks to Lena Dunham for once again putting it all out there, I hope it helps to quiet some of the "you never know" and "but have you tried" bilk that makes a body question their decisions when their decision is absolutely the right one. FOR THEM. And how freeing that statement that we can hope, but we can't expect, to have a clear path with biology. Makes me feel a little better about my own dysfunctional reproductive system.

  4. Wow. Just... wow! I’m so glad you shared!

  5. I read her article too - I think thanks to Infertile Phoenix. And my exact thoughts were that every celebrity who speaks out about their story helps.
    And yes, it's so disgusting that women's reproductive health issues are still so ignored. I'm off to read the second article now.