My very specific dysphoria is so powerful, I am putting my health in serious jeopardy trying to address it. No hormone or current surgery can fix it, and very few understand why. Time for a very personal story that is still in progress.
My Dysphoria & Disenfranchised Grief
Not all transgender people suffer from dysphoria, but I do. While hormones and surgeries have gone a long way to address my outward appearance and align my body with my mind, my pain runs much deeper. I feel incomplete.
Motherhood is central to my identity. I have two beautiful, biological children. I love them with all of my heart. I fought hard for the right to be called Mom. They have been amazing throughout the entirety of my transition, and I do not believe I would be alive today if not for them. Their wholesome and total love for me has been nothing short of life-affirming. I am proud to call myself a mother, and I challenge any notion that I am otherwise. As I said in my The New York Times “Conception” video, “I am a mother in all senses of the word except the physical, and there’s nothing I can do about it, and that hurts—and will always hurt.” That lack of physicality is where my dysphoria really kicks in. While I am a mother, I did not carry, birth, or breastfeed my children, and I have difficulty expressing how deep and dividing that pain feels.
Whenever I describe how connected I am to these ideas, I feel many people simply do not understand why experiencing pregnancy or childbirth is so important to me. “Oh, you want a have a baby? Why not adopt or use a surrogate?” These people miss the point. My needs do not reflect on a simple desire to increase the size of the family. They revolve around the absence of not experiencing everything that goes along with pregnancy from the joys of feeling kicks to the lows of morning sickness to the pains of labor and beyond.
These needs—and they really are needs—manifest into actual physical discomfort. Most often, I experience these moments when interacting with media that revolves around pregnancy or a birth. I connect with the character and the emotions I feel they must be experiencing in addition to feeling a sense of loss that I cannot feel the same way. I have been known to reach for my belly while watching a TV show or a movie as I feel for where I believe a baby should be inside my body. Sometimes, writers take the story in a darker direction and include topics such as miscarriage or stillbirth, which are doubly damaging to me. In these situations, not only do I feel the loss of not being pregnant but the additional loss of feeling what it might feel like to lose a baby. One particular episode of This Is Us featured an hour-long deep-dive into the emotions of miscarriage, and I was bawling throughout the entire episode. I actually had to pause my viewing about two-thirds of the way through to recover. When I say these emotions run deep, I am not kidding.
When I had GCS, I asked my surgeon for a magical vagina, and now nine months recovered from that surgery, I think he did a great job with my request. For many trans women, a surgery like this is the pinnacle of their physical transition. I have a friend who recently got hers, and she reportedly cried in joy. For me, I did not break down in bliss because no amount of magic on that day was going to provide me with a womb, and thus, in my personal view, I felt incomplete.
Uterine transplants were once something of science fiction, but clinical trials have begun in different places around the world, including at least one in the United States. I looked into them, and unfortunately, I am not a candidate. As always seems to be the case, transgender people are the last to get nice things. The studies generally require the participant to be a natal woman. Even if that was not the case, I have yet to find one that determines me to be “of childbearing age.” Basically, I am too old to be a viable candidate.
Addressing my severe dysphoria is a unique challenge. I have reached out to my support groups, therapists, care team, and friends looking for a story that is similar to mine, but to no avail. Even the Great Google has failed me. I have found trans people who have lactated. I have found trans people who have had pregnancy desires they were able to let go. There are support groups for seemingly everything, but I have yet to find someone else that attaches to my specific dysphoria as strongly and as passionately me. By no means do I feel I am a unicorn. I have to think other trans women exist that feel as I do, but they just have not shared their stories for one reason or another. This makes finding resources difficult and leaves me in a position to figure out where to go from here. A friend of mine likes to remind me that I need to write this story for the other unicorns with my same dysphoria. Maybe by writing this story, I can help them while also helping myself.
Unfortunately, many people do not understand or fully grasp the full emotions of what I experience. I recently case across a term called disenfranchised grief that truly sums up this concept, which is defined as, “grief that persons experience when they incur a loss that is not or cannot be openly acknowledged, socially sanctioned or publicly mourned” (Ken Doka, 2002), one aspect being “…the empathic failure of others to understand the client’s experience of emotional pain and the subsequent inability to acknowledge the [person’s] grief.” This minimization of the loss by society makes dealing with the grief that much more difficult because society does not validate the loss. When I speak of how deep and dividing the pain of not being able to conceive and carry is to me, my pain frequently falls on deaf ears because my audience cannot generally identify with that pain unless they have gone through a similar disenfranchised loss themselves, such as infertility, miscarriage, or the loss of an adopted child. When people cannot connect with a problem, those same people cannot fully empathize with the situation. Others may simply pass judgement or feel I am trying to somehow appropriate or diminish motherhood. Society cannot acknowledge my loss or grief because it simply does not understand my pain, which makes resolving the pain even that much more difficult and isolating.
I am very much alone on this journey because I have not been able to locate anyone that has had similar feelings or experiences. Therefore, I have been left to my own devices and research to figure out how to overcome my pain. Combining my creativity and headstrong nature, I have cobbled together a plan to help address some of these needs to the best of my ability. I admit that I might not be making the best choices, but I believe they are the best choices for me given my situation and the severity of my dysphoria. I have engaged the help of multiple therapists, an obstetrician, and my endocrinologist. I perform blood work every five weeks to monitor my health. While I do put a lot of pressure on my medical care team, I am thankful that while they may not fully grasp my goals, they are willing to work with and advise me despite their discomfort in the effort to keep me healthy while I venture into some uncharted territory, and for that, I am incredibly thankful.
As uncomfortable as I find myself sharing these experiences for fear of judgment or being taken out of context, publicizing my story has many goals. Maybe I can help the few other “unicorns” who have similar unexpressed feelings and can use my journey as a guideline to help address their dysphoria. Maybe I can inform society so that my grief becomes less disenfranchised and more understood. Ultimately, I know my story is relatively unique and possibly interesting, but like other entries in this blog, I share because these are the experiences of my life that I feel need to be expressed. Writing it out helps me help myself mentally, and if I can educate or help another in the process, then sharing is even more beneficial.
So how does one start simulating a pregnancy? I started by doing deep dive research into the interesting world of lactation—especially by those that did not carry their child, including trans women, partners of pregnant lesbians, and adoptive mothers.
Lactation Protocol
As I stated at the top, there are no current hormones therapies or surgeries that can totally satisfy my needs and quell my dysphoria. While carrying and delivering a child are actual impossibilities, my copious research did yield an interesting find: trans women have been able to produce milk. I became fascinated by the few news stories that featured couples where a non-gestational mother was able to lactate to enable co-nursing. Invariably, these stories mentioned something called the Newman-Goldfarb protocol and a drug called domperidone. I began to have visions of doing something I once thought not possible. I may not be able to do everything, but this is something my body might actually be able to do!
The Newman-Goldfarb protocol was developed by Canadian doctors to primarily aid women who might be trying to re-lactate, increase supply, or provide a way for adoptive mothers to feed their children. The protocol involves taking a birth control pill for up to six months to increase estrogen and progesterone, which are the dominant hormones during pregnancy. In addition, domperidone is added to increase milk supply when pumping begins. Much like spironolactone (a blood pressure medication) is used off-label to block testosterone in trans patients, domperidone is an anti-nausea drug with the side effect of swelling of the breasts and the potential to cause lactation at higher doses. After six months, the birth control pill is discontinued to bring down estrogen and progesterone levels, which is the same thing that happens after a live birth. The cessation of the hormones is a signal to the body to start producing milk following the birth, and thus lactation begins with the help of a lot of pumping.
I read over the protocol, and it seemed relatively straightforward. If I were to start this process, I would need to acquire the domperidone on my own. Unfortunately, while it is widely available around the world as a prescribed or even over-the-counter medication, the FDA has not approved its use in the United States for what seems to be convoluted reasons, so I would need to find an international source and pay out of pocket. I would also have to modify the program a bit to avoid the birth control pill. The pill is contraindicated in trans people, but this was no big loss since my HRT already included both estrogen and progesterone. I would just need to increase my doses. For the pumping portion, I am lucky enough to still have the breast pump my wife used with our children.
After doing the research, I was very interested in starting the process, but I initially hesitated. Would I find what I needed by following this protocol? Would the ability to produce milk satiate any part of dysphoria, or would it exacerbate it knowing that even if I did successfully lactate there would be no baby at the end to feed? I struggled over whether to even begin fearful that I could be leading myself to a terrible depression. After a lot of agony, I resolved that I needed to try because if I did not make the attempt, I would eternally suffer from “what ifs.” Even if I tried and failed, at least I knew I tried instead of dealing with the unknowns of never knowing. So, I found an online source to buy the domperidone and increased my estrogen. When the domperidone arrived the week before Christmas, my lactation journey began.
I consulted with my endocrinologist on the lactation piece since I wanted a doctor to consult on the journey. While initially hesitant, she understood that I felt I needed to try this, and she was willing to work with me. She researched on her own and found much of the same studies and articles I had found since not many instances of trans women lactating has been recorded. On my request, we began lab testing every five weeks so that I could be well-monitored. The protocol itself is relatively safe, and she had no major concerns upfront.
Thinking Beyond Lactation
I was hopeful that by following my own modified version of the protocol, I would eventually be successful producing milk. A few months in to the process, I was provided with proof of concept. My breasts had increased in size a bit, and I found that if tried hard enough, I could hand express small white droplets from my nipples. They were watery in nature, but they were white. By design, my estrogen and progesterone were preventing any real production or leakage, but the fact that I could squeeze out milky drops made me feel accomplished.
While the protocol calls for up to six months to fully work to begin lactation, I knew I needed more. In my case, I was not trying to lactate to meet my partner’s due date or an adoption date. The start and end of my lactation process was relatively arbitrary, so I did not feel bound by stopping at six months. A typical pregnancy lasts 40 weeks, and the protocol is relatively harmless. Why not go a full 40 weeks just like a pregnant person would do naturally? So, six months turned into a plan to go a full 40 weeks.
But my mind did not stop there, and my mind began to wander. What else could I do to address my dysphoria? A uterine transplant was off the table, but I started to think of other ways I might be able to feel the effects of pregnancy. Lactation was not going to be enough.
My research of the Newman-Goldfarb protocol had me researching estrogen and progesterone therapies as a replacement for the birth control pill. I questioned how much estrogen and progesterone would need to be in my system in order to be successful in triggering the letdown effect at the end of 40 weeks. I began researching typical estrogen and progesterone levels in pregnant people.
As part of my regular HRT, my estrogen levels were already considered elevated by my doctors for transgender women. Only one other time did my estrogen levels rise up into a range consistent with pregnant people, and that was by accident. Now, I began planning to do it intentionally. In my effort to experience more traits of pregnancy, I began taking higher doses of estrogen pushing my levels first into a range consistent with a first trimester pregnancy and later a second trimester pregnancy. This caused some minor headaches and an increase in overall body temperature, but my body adjusted to the new levels. My endocrinologist became highly concerned.
One of the highest risks in estrogen therapy is the elevated likelihood of blood clots, which can lead to heart attacks, deep vein thrombosis (DVT), pulmonary embolisms (PE), and stroke. This concern was raised prior to my bottom surgery, and now it was being raised again as my estrogen levels started testing about four times higher than my baseline. On several occasions, my endocrinologist has asked me to stop by cutting my estrogen doses by at least half, but in my mind, that would defeat some of what I am trying to accomplish.
To be sure, the decision to reduce my estrogen or not is a very difficult one. If I were to have a heart attack or stroke, what would happen to me? What would happen to my children if I were to be injured or die? Those are serious things to think about, and my children mean the world to me. Anyone who attempts to diminish the power of dysphoria does not understand how hard a decision like this is to make. Now over 30 weeks into what started as a lactation protocol and what has turned into a pseudo-pregnancy, I am faced with what could be a life-threatening decision. Do I follow my dreams and do what my mind tells me I need to do, or do I abort the process to protect my safety and my family? The challenge comes down to balancing my physical health with my mental health. After deferring the decision for several injection cycles, I finally came to the realization that I was not going to reduce my estrogen. I think in my head, I had made the choice weeks ago. Emailing my endocrinologist simply formalized it.
The Physicality of Pregnancy
With my lactation protocol well underway and my estrogen raised, I have built a foundation for my pseudo-pregnancy. I am on pace to be able to produce milk, and I am feeling some of the hormonal effects of high estrogen. Still, this journey cannot be a success if I do not address the heart of my dysphoria, which is the fact that I cannot feel fetal kicks and experience the physicality of pregnancy. Back to my research I went, and I came across the Empathy Belly and the RealCare Pregnancy Profile Simulator.
These devices are 30-33 pound vests that are designed to give the wearer the temporary experience of what is like to be pregnant. They contain water bladders to simulate a fetus, extra weight, and a rounded belly to simulate the profile of a pregnant person. They even include rib belts with balls to simulate fetal kicks. Usually, these devices are used in limited classroom settings for no more than three hours. I read one news story of an empathetic father-to-be who wore one for a month. Could I do it for 2+ months without causing myself injury?
The more I thought about the possibilities, the more excited I got to purchase one. The problem? These devices cost about $900, and I would also need to buy maternity clothes to fit over it! The costs seemed prohibitive, and I balked. My dysphoria cried out: you need this. I told myself that I had been working a lot of overtime recently, and that I could justify the cost. A lot of self-talk and encouragement from friends put me on the edge of buying one. Even my wife surprised me. When I told her about the possibilities, she made an observation that I would have spared no expense to make sure she was healthy through her pregnancies, and that my experience should be no different.
A week later, that support was gone. Apparently, $900 was too much of an expense for a situation that ultimately made her uncomfortable. She threw out every excuse in the book as to why spending this money was a bad idea, and finalized the conversation with, “If it is between this and a dead Gabrielle, then buy the belly.” The extremity of that statement still stings. Not being able to experience the physicality of pregnancy would likely not stretch me towards suicidal ideation, but it would certainly put into question everything I have been doing since December and possibly lead me down a road of depression and resentment. With continued encouragement from my friends and community, a few days later, I ordered the Empathy Belly, and as of the moment of this writing, I am awaiting its arrival.
I still have not figured out one key piece to the end of my “pregnancy”: labor. I have watched the cheesy videos of not-so-empathetic fathers-to-be going to clinics with their pregnant partners get hooked up to electrodes and scream out as they experience the simulated pains of labor. Usually, the simulation lasts for only about 30 minutes. I would be interested in going through a similar experience for several hours. As I have said, I do not want to shortcut any part of this journey. Active labor does not last 30 minutes, nor should mine. But where—especially in pandemic times—where can I find a technician that would indulge these desires? I don’t yet know. A friend of mine had a great idea: virtual reality. I got really excited at the idea of experiencing the labor experience from a first-hand prospective, but I have yet to find anyone that offers that experience.
Thoughts After 32 Weeks
Now 32 weeks into my lactation protocol, I am still squarely in the middle of this journey, and there are still a lot of unanswered questions. Since I cannot conceive, carry, birth, and feed a baby, defining success is difficult because I cannot achieve what I ultimately need to feel complete. The best I can do is to simulate as much of the experience as possible in as close to a realistic way as I can. Given my best efforts, I may still not be able to address all of my needs, and a severe depression could be in my future. However, I am not deterred. My wife accused me of treating the symptoms and not the disease. I went into this aware knowing there would be no baby at the end, and that alone, will carry with it a sense of loss that I must face, and much of that grief will be disenfranchised. I am working closely with my therapists, friends, and community to try to mitigate some of those feelings when I get to 40 weeks—provided I do not have a health scare prior to that point.
I look forward to the arrival of my Empathy Belly. If it can provide more of the experience I seek in terms of simulating the physicality of pregnancy (especially fetal kicks), then it will be worth the awkward position I will be putting myself in society. Explaining my changed body profile at work, for example, will require some courage, as well as overcoming my wife’s trepidation and discomfort. I will continue to research the possibility of imitating the labor experience. At 40 weeks (on or about my “due date” of September 23), I plan to adjust my hormone levels in the effort to trigger a letdown of milk and begin pumping every three hours or so. In the absence of a baby and provided I can produce a substantial amount, I hope to donate my milk to babies in need so that it is not wasted.
Can I truly find joy by putting myself through this experience? I am not sure that is possible. Joy would come if I was able to get everything I needed to satisfy my dysphoric needs, which is impossible. I hope I can look at this experience in hindsight and say to myself that I did something special and that I did everything in my power to do what I felt was right for me in the moment. While not intentional, maybe the pandemic is a suitable backdrop for this experience. Maybe this was the perfect time to deal with my ultimate loss as we all simplify and focus on the things most important to us while we shelter-in-place for weeks and months on end.
Every transition is different. This one is mine. Mine, unlike many others, includes the unique experience of simulating a pregnancy to address my very specific dysphoria. Doing so carries physical & mental health risks, potential isolation, and disenfranchisement. That being said, this may be one of the most important things I have ever done for myself. I thank you, dear reader, for doing your best to support me and my efforts, even if you do not fully grasp what I am trying to accomplish or why I am so adamant about following a dream that cannot be entirely realized.
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