Trans Healthcare is a Joke
A transwoman’s opinion
CW: There are medical terms, diagnoses, and dosages in this article. These are for reference only. I am not a medical professional. I am an underserved patient forced to learn about my own care.
Healthcare shouldn’t be this hard
Logan Silkwood is my transmasculine guide and he writes about transmasculine medicine.
A Hypothetical:
Imagine, that you have a diagnosed medical condition. You have suffered from this condition for the majority of your life. This condition went undiagnosed for decades in some cases. You suffered from the symptoms of this condition for as long as memory serves. Your infirmity has kept you from attaining your full potential.
Then, seemingly suddenly, you become aware that you fit a description that other folks fit. You may have seen an article that speaks to you, or have met someone who also suffers from the same symptoms. You may have noticed the positive visibility in media. You start to realize that there are more people with your exact condition. You think, “there is a cure”.
You rush to your doctor for treatment for this widely known condition. Literally millions and millions suffer from this same diagnosed condition. Hallelujah.
Not so fast!
You do have a diagnosed medical condition, but sadly there has not been enough study of your condition to reach a medical consensus. There are no drug trials; there are no high-dollar commercials selling Transitiona, for a seamless transition. Because of this, you fall into an off-label prescription treatment program.
There are no drug trials; there are no high-dollar commercials selling Transitiona, for a seamless transition.
Over the last 50 years or so, we have seen millions and millions of patients with your exact symptoms get relief with this evolving treatment protocol. It has literally saved lives.
We can only offer you this, technically experimental treatment, if you absolve us of any responsibility for literally anything that may happen to you.
If your malaise is a rare blood disease or the like, then you are a cash cow. I said it. Your condition is real, and big pharma sees profit from your ailment. If however, your diagnosed medical condition is Gender Dysphoria, you are not considered profitable.
And so begins the gatekeeping
Ok, you have had this condition all of your life, and then you find a place. This place sees patients like you. You have just admitted to yourself that you have a medical condition. Now you must tell complete strangers. There is no handbook. There are no operators standing by. There is gatekeeping.
Scheduling an appointment sends you into a downward spiral of self-doubt and denial.
We say to ourselves, “I don’t feel sick right now”. “I am sure it will pass.” ” I’ll do better”. “I was weak, and did not try hard enough to be healthy”. This illness is different for different individuals. However, there is one universal truth that each of us must come to grips with; we have a medical condition that can never be cured. It can be treated with a 98% success rate.
We have a medical condition that can never be cured.
Now, on to the treatment
In the United States, transgender women’s off-label treatment is provided under what is called informed consent (Cavanaugh et al., 2016). Basically, we acknowledge that we are taking medications that were not approved by the FDA for the treatment of our condition. Planned Parenthood frequently provides care under the informed consent model. I started my treatment at Planned Parenthood.
Our health in our own hands
During my first visit, I was asked to sign a couple of waivers and such, this is standard. We must accept that bad stuff could possibly happen to us, such as an increased risk of DVT. I have looked for mortality data on transgender people. I found the below study by van Kesteren (et al., 1997) among (others) that have reached the same conclusion.
There are entirely too many physicians who are totally ignorant of transgender healthcare. Even the well-meaning physician is not willing to put in the effort to explore new treatments. There is a cookie-cutter regimen that almost all physicians use when dealing with transgender womens’ healthcare. That leaves us to be our own advocates.
We are left to be our own advocates!
Many of us are terrified to make the appointment and are in some state of fear and gratitude that we can finally receive treatment. I call this terricited. So, when the doctor, who is frequently a Nurse Practitioner, gives us the cookie-cutter prescription, we are just so happy that we accept it at face value. This course of medication is usually 1 mg to 4 mg of estradiol taken twice a day in the form of pills; I was prescribed 4 mg daily. This is combined with an Anti-Androgen (AA). In Europe, they prescribe cyproterone acetate (CPA). In the united states, the most widely used AA is spironolactone (Spiro). I was initially prescribed Spiro, 50 mg twice a day. “Take with food.” I did that blindly, like most of us do. Number one: you will pee a lot. I often wondered why I didn’t just pour the beverage straight down the toilet, thereby saving time. Additionally, I suffered from brain fog. That was annoying. Also, there are dietary restrictions. Potassium must be carefully monitored.
DIY healthcare
I was heavily into trans chat and I was a member of a DIY trans server. Those folks in there are sharp. You must be invited and vetted to get in. In the DIY server, I learned about another more effective AA called bicalutamide (Neyman et al., 2019).
I'll sum it up for you:
- no dietary restrictions
- no brain fog
- one of the side effects is gynecomastia (which is almost universally desired by every transwoman)
Oh, and it controls testosterone like a champ. I bought this from a black market medication site before I was prescribed it. Same stuff I am taking now, just way harder to get. I had two orders seized by customers. (Disclaimer — please check the legal and custom regulations in your country if you are considering a similar route.)
When someone finally listens
Doctors really love it when you self-medicate. I came clean and my new doctor prescribed the entire regimen I insisted upon — Injectable estradiol, bicalutamide, and progesterone. I am still with that clinic. Planned Parenthood seems to treat trans healthcare like an afterthought. They would not prescribe my injections, so I found someone who would.
Planned Parenthood would not prescribe my injections, so I found someone who would.
Extra steps
Now, you are thinking right about now, “Eureka! The secret recipe has been discovered”? Not so fast. Not all of us will get the best, most current treatment for our condition. If you live in a rural setting, you may have the choice of one clinic within a reasonable distance. This clinic will likely have very little trans healthcare experience. You will never get them to go outside of the WPATH guidance. WPATH is way behind in trans healthcare.
I implore all transfolk who read this to watch the video below with Dr. William Powers and associated reddit before you blindly follow your gatekeeping physician’s outdated advice. Ask them if they have attended any seminars. Ask questions. Some doctors are happy to review data to see if they can meet your requests.
We must know about the treatment we require. If done incorrectly, the results can disappoint. So, speak up, do your homework, have your resources handy, and make your case. If your current physician still won’t learn, you must find one that will.
Be well, be confident, and take control of your healthcare.
Thank You, Kitty
