8 Things I Wish I’d Known Before My Hysterectomy as a Nonbinary Black Person
*May this essay speak the truths that I was unable to find anyone else speaking while on my own journey*
I am many things- silly, a poet, Black, short, a researcher, anxiety-ridden, genderless. These things, the people in my life know well about me. I like to be transparent with those in my community; it makes us all safer and educated on how to best care for one another. However, for years, I fought a battle that silently commanded my life as I minimized the reality of its destructiveness. Ever since my first menstrual period at age 11, I experienced monthly bouts of pain so bad I could barely walk, talk, or think. Every day, for at least 7 days, I would barely slug through a day of high school…college…grad school…work and heave myself into a bathtub full of water hot enough to scald hell. It was the only thing that worked to feel even slightly better. Once I was old enough to discover alcohol, I combined the fluid of the bottle and the fluid of the bath to ease the pain, however temporarily.
But as I got older and my responsibilities grew but the pain didn’t get any duller or last a shorter period of time, I decided to seek a divorce from my reproductive system. I have always known that becoming pregnant and birthing are not things I ever want to do, so I didn’t really need it. Very, VERY long story short, thanks to the hard work of myself, medical professionals, my friends, and my relatives, I laid back onto a bed on December 9, 2021 as a mask was slipped over my face. Seconds later (in my mind), I blinked my eyes open to the good news- my total hysterectomy was completed with no complications, and my uterus, ovaries, fallopian tubes, and cervix were tucked into a bio bag (that I never got back despite requesting- but that’s a separate essay).
With a year now separating me and that pinnacle of a day, I wanted to take some time to reflect. In doing so, I want to share the top 8 things that I believe would have saved me a lot of headache and work had I known them prior to starting my journey. This is shared from my perspective as a nonbinary Black person who was assigned female at birth and has a (relatively) middle class economic status.
You will spend a lot of time trying to get approval to make changes to your own body
When I say “a lot of time,” I mean a lot of time!! I was 24 the first time I ever scheduled an appointment to have a gyno inspect my reproductive organs and 29 when I finally inhaled the anesthesia in preparation for the procedure. That was 5 years of THREE different doctors denying me the treatment I sought and questioning my decision-making capacities.
“Are you sure you want to go that extreme?? I mean, you’re so young…”
“I think you should wait until you have at least one child…you wouldn’t wanna regret not being a mom…”
“Have you talked to your boyfriend about all of this? What’s he going to think?…”
The lives of men I’m no longer with and babies I will never create mattered more than the life of the crumpled, pain-ridden ball right in front of them. If I got paid by the hour for the time I spent to find new doctors to inquire with and make phone calls and appointments and Google search and lay back for 1, 2, 3 ultrasounds…I still wouldn’t be living lavish, but my savings account would thank me. Still, with determination and increasing education, I finally found *the one*. A Black female OB/GYN specializing in queer and trans healthcare only two hours from me!! There were still bureaucratic processes to navigate with her office, but she made it clear from day one that she was there to help me achieve my medical goals, an almost-too-good-to-be-true commitment from a doctor.
If you are considering a hysterectomy for any reason, know that:
-doctors will be hesitant to perform the procedure if you are under the age of 35 and/or have fewer than 2 children at the time of request.
-some doctors may want to perform preliminary surgeries to see if you actually “need” the hysterectomy…it is up to you to decide if you have the will/funds/energy to endure multiple procedures with no promise that you will get relief.
-some doctors and/or insurance companies will not perform/cover the procedure unless you have tried everything else (i.e. other, supposedly less drastic forms of birth control). For me, this meant getting an IUD that made me gain 15lbs and act insane, only to have it removed within 2 years because it shifted in my uterus.
-if you mention being trans/nonbinary, some doctors may assume that you are using those facts about yourself to secure a gender-affirming surgery disguised as a medically necessary one. If you can only access an OB/GYN that is willing to perform the procedure but is not LGBTQ friendly, you are unfortunately probably better off just never mentioning it and delighting in your new pain-free AND gender affirming body after the procedure is completed.
-all of the above will take months and years, time during which you will be the very pain for which you seek relief. Stay strong.
It’s expensive!…even with insurance
Yep, you heard it here first- the American healthcare system is a bad stand-up act, and the fact that it operates as a business simply means that you cannot get good care without someone footing a bill. I personally was very fortunate to have insurance, a good doctor that knew how to code the procedure properly to ensure that insurance would approve it, and a strong, amazing community who used their spare dollars and time to help me get what I needed. All things considered, my surgery cost about $15,000 USD. This figure includes the costs of:
-the procedure itself
-the overnight hospital stay
-the post-op medication (pain relievers, stool softeners, laxatives, glucose tablets, etc.)
-a hotel in the city where the hospital was located
-gas to drive two-hours both ways to the hospital for multiple pre-op and post-op appointments
-time off of work for 7 weeks as I rested and allowed my body to repair itself so my main caretaker and I could still pay our rent and bills
If you live in the US and a hysterectomy is on your vision board, be sure to envision how you are going to secure the funds to cover these things. Note again that I do not have children and childcare/childrearing costs have never been a concern. If you have to care for young ones and need the procedure, you should really ensure that you have firmly committed helping hands to take on their care because…
You MUST honor the healing period or perish
Prior to the surgery, I had never considered what happens to the body when it is burst open as a several-pound mass passes through the vaginal cavity then sewn closed again. I know that millions of people experience it daily and are happy to hold the wet mass of their newborn child against their chest. Somehow though, it didn’t fully *click* for me that any type of wet mass passing through a vaginal cavity, baby or not, would be a process just as destructive and violent as the internal storms that the procedure was relieving me of. My doctor took care of this though, and via a verbal play-by-play complete with coach’s notes mapped out onto the examination chair tissue, she helped me face the real horror of the whole ordeal.
I eventually had 3 incisions made for the procedure, two on either side of my lower abdomen and one inside of my vagina, all to help guide the team as they snipped my organs from the parts of me I wanted to keep then pulled it all out through my vaginal cavity. Thinking of it makes me feel like a living mummy. Like a mummy, I was fragile and ready to unravel at the slightest bump or strain. I had pain medication but opted mostly for prescription strength Tylenol instead of the opioids that we have all seen ravage communities and destroy lives. This meant that the healing pains were always present to some degree. I was instructed to bed rest, only rising for bathroom trips, for 2 weeks. I didn’t listen and tried to attend a friend’s Christmas party after about a week and a half (it was my first holiday party since the start of the pandemic and I missed my friends, mmk!). I didn’t drink alcohol or move very much at all, but the car ride alone was enough to undo a good bit of the healing process and I began to have bleeding issues. A call to my doctor made it clear that I was told to get into bed and stay put for a reason. I ultimately was on complete bedrest for a total of 3 weeks. I played Sims and card games and watched tv and painted. It was lovely.
If you, for whatever reason, cannot commit to a total bedrest period for at least 2 weeks, you may want to reconsider your pursuit. Intestinal prolapse and/or tearing is no joke and neither are the additional medical bills that would come with fixing that problem…
Big changes in hormones mean big changes for your body
Hormone replacement therapy (HRT) is a part of my journey that I didn’t give much thought to until my doctor made it clear that people under 40 aren’t just discouraged from hysterectomies ONLY because of misogynistic and anti-Black medical practices. Stopping estrogen production in youth increases the risk of developing a number of afflictions, including osteoporosis and several cancers. My options were: go on estrogen HRT, go on testosterone HRT, or refuse hormones and risk cancer. I am not a trans man and like my feminine body, so I chose estrogen HRT. I started on estradiol patches (.05 mg) and now use estradiol gel (0.1 mg). If I miss a dose, I begin to display menopause symptoms within 24-hours, namely hot flashes and mood swings. When I forget my medication, my body lets me KNOW.
Estradiol HRT has overall gone really well, and I have few complaints. The biggest things are that now have b00bs (used to just have boobs). I am nonbinary, and large breasts are dysphoric for me. So now, I manage my health and weight to stop them from getting too large for comfort.
Also, my face is rounder. I can live with that…and I must because I’ll be on this medication until I’m in my 50s.
You will require a lot of follow-up maintenance
The work of healing your post-op body is arduous, and you will need support- physically, mentally, and emotionally. Between my partner at the time, my mom, and my friends, I had the support required to ensure that my medications were taken on time (and that I wasn’t mixing the ones that weren’t supposed to be mixed!), use the bathroom, bathe my body, check my stitches, cook and set up my food, drive me to my follow up appointments, and so on. You can theoretically do these things for yourself with a lot of prep work prior to the surgery, but I imagine that would make for a very lonely and stressful (and therefore prolonged) healing period. I had no clue that it would be nearly 2 months before my body felt even remotely normal again, but I truly needed to use every bit of that time to rest and repair. Between this and the knowledge that refusing to rest would literally put my life at risk, I am all the more adamant that it is absolutely insane to ask postpartum birthing people to return to work any sooner than 2 months after giving birth. I am also simply done with capitalist workplace standards that require people risk death just to earn barely enough to live…
The medical field is not prepared to best serve and care for you
I said what I said. The world of modern medicine is neither by nor for Black or genderfluid people. As I said earlier and stand by, the surgeon I secured was the best possible doctor for me. What made her so great was that she was open and honest about what she did and didn’t know. She knew that I was one of her youngest patients yet and there were a lot of risks involved. My post-op tissue analysis revealed that I had several small ovarian cysts and scar tissue from what is presumed to be endometriosis…confirmation that the pain I had been enduring for years had a cause and source that was ignored by previous medical professionals for YEARS. I certainly am not the first and won’t be the last Black “woman” to have my pain minimized and dismissed simply to help them maintain a sense of piety and superiority regarding the female reproductive system.
Because I am not ftm or mtf trans, my doctor was really unsure of what to do about the situation with my hormones. As explained above, we did come to a conclusion, but it took several weeks between consultation and when I decided how I would move forward. I also had to adjust my dose and delivery method because what we initially agreed on just wasn’t working for me. Even trying to independently research advice on how I should adjust my HRT yielded hardly anything helpful. All the forums about estrogen HRT are full of inquiries for women nearing menopause and trans women talking about getting boobs for the very first time. I was certainly happy for all of these people, that they were having community and conversations about how to give their bodies what they want and need. But I didn’t — and still don’t — have a community of people who were assigned female at birth and are now genderless but don’t want to change any part of their physical appearance they just want to get rid of their uterus because it’s painful and they don’t want to use it. If you or anyone you know also fits this hyper-specific description, tell them to hit me up.
I was scheduled to get my organs back- I completed and signed the paperwork. I was excited to have my separation ritual that I had been planning for months. Long story short, the hospital didn’t communicate properly within its teams and they disposed of my organs and I never got them back…I might still be a bit bitter about that one. All said, getting the care you need and deserve before, during, and after a procedure will require you to listen to your body and be its fiercest advocate. Stay focused and diligent, and at the very least you will leave the operating room alive and on a feasible road to recovery and a pain-free life!
You may have to change some habits/hobbies
As someone who is just now 30 years of age, it is just now dawning on me that bodies don’t just change once after puberty. They change forever and ever until they are no more. After my procedure my body changed in many ways, and some of those physical changes are highlighted above. A change that I did not anticipate is how certain foods and drinks would react with my medication. Another oversight of the medical system, no one thought to tell me that drinking even just a few times per week while taking estradiol greatly increases the risk that you will develop breast cancer and blood clots. I just learned this three days prior to writing this essay because I started to notice that every time I went out drinking with friends (once every other week or so), my breasts would be very swollen the next day and take several days to deflate back to normal. I Googled whether it was normal or if it was my medication alone, then finally searched alcohol and estradiol and hit the jackpot. So now, as of 3 days ago, I‘ve resolved to not drink unless it’s a very special occasion. I haven’t consumed alcohol since my most recent outing with friends; and I’m not struggling to refrain from drinking, but I do love a good cocktail and it is sad to say goodbye. After your hysterectomy, be sure to monitor your body closely and listen to every creak it makes. If you struggle with substance use, you may want to consider a rehabilitation program prior to your procedure so that you can more easily make the choice to abstain from certain vices in favor of your health. We deserve to live, and we must do what we can to keep being so.
You won’t be perfect, but you’ll be freer than ever
All things considered, I was 100% correct that getting a hysterectomy was what I needed to do to free myself of the pain that plagued me since childhood. Now that I no longer menstruate, I realize just how absurd and unsustainable it was that I would take a week (sometimes more) off work or to separate from my friends and relatives just to sit at home in the bathtub with a bottle of wine and Hulu cued on my laptop just to distract myself from the storm my organs were waging inside of me. I can now plan travel for whenever I want (Martha, I swear I’m gonna come camping on Halloween weekend one year and will actually be able to enjoy myself!), I’m not spending money on so, so many products to manage unrelenting periods, and I’m able to enjoy sex without worrying whether a cyst or inflamed ovary will cry out in pain and ruin the whole production. And although I’m still managing my post-op body and learning how to care for it, it thanks me every day and I thank it in return for carrying me all these years and allowing me to make it what I can be proud to kiss in the mirror.