Since starting my blog, I have met many incredible individuals online and I’m happy to introduce to you one of them today. Earlier this year, I was doing some research into non-binary and/or transgender pelvic healthcare and came across an Instagram post regarding ones struggle of getting the treatment and care they deserve. I commented on this post asking a few questions about being non-binary and transgender and Milo(they/them) generously reached out to me and was kind enough to guide me in the right direction of useful links.
You can find the links here:
This sparked the idea about writing a post about being non-binary and transgender in an already sexist healthcare system. If they were dealing with this first hand, I’m sure many others around the world are too.
As I laid there in front of my empty screen, I struggled finding the right words and became afraid of saying the wrong thing because this is a topic I have no personal experience with.
But that is exactly the whole point. I understood that this is an important issue but me writing a blog post about it, isn’t my place to say anything or offer any sort of solutions.
It is only my place to listen to what they are saying.
To listen. To express empathy, and to show my support.
So without further ado, I’d like to introduce you to Milo (they/them), who is from Thunder Bay, Ontario, Canada.
Below, you will find Milo’s words and personal experience living with chronic pelvic pain and being a non-binary and transgender person:
Things are difficult trying to navigate the world with a chronic illness. Suddenly your whole life is affected and changes without notice. You have to try to live your usual life while also juggling medical appointments, treatments, medications, surgeries, and all during a pandemic, on top of everything else. Well for some of us, that’s not where the piling up ends. Having endometriosis, which is a largely cis woman-centred disease, as an AFAB (assigned female at birth) person who is non-binary and transgender, is a complicated and often unrecognized experience.
Let’s start out with some context. I’m Milo. I live in Thunder Bay, Ontario, Canada.
I am non-binary and transgender (non-binary basically means that I don’t identify with the gender binary of male and female, and I exist outside of those boxes, and transgender means that I don’t identify with the gender I was assigned at birth).
I am AFAB, which means “assigned female at birth”. I was assigned female, but don’t identify with that box I was placed in as a baby, but I was born with a uterus, ovaries, breasts, vagina, and all the other “female” parts typically expected from someone who is AFAB. I am 32 years old, and have been struggling with undiagnosed pelvic pain for several years.
I live in a rural part of the province, where at roughly 100,000 people, we are the biggest city, and therefore a hub, in this big northwestern part of the province. We have limited resources here, and folks are often sent west to Winnipeg or south to Toronto for specialist appointments and procedures. So many folks here don’t have primary care physicians, and many utilize the emergency room because there are either walk-in clinics (limited hours and often packed), or your family doctor, which is a longer wait for the actual appointment plus tests that could be done in emergency. We don’t have any kind of urgent care clinic or centre aside from the ER. I’ve been one of those people that have had to utilize the ER fairly frequently, simply because I have been in so much pain that I thought I might literally die, on several occasions.
I’ve always had tricky periods. I was put on the pill when I was in eighth or ninth grade in order to control the large amount of pain I experienced, plus my heavy flow, and was on it consistently up until a few years ago. I have high blood pressure, and the pill can make it higher, so my family doctor wanted to take me off of it. He suggested a hormonal IUD (Mirena) and referred me to a gynaecologist. That ended up not being the right one for me (I’m sensitive to “female hormones” and it messed up my mental health) and that was soon replaced with a copper IUD (MonaLisa) and I’ve had no problems since. It took my body a long time to adjust to the lack of hormones being given to it though, and I went through almost like a withdrawal from them as my body had to recalibrate. The copper IUD can cause heavy periods, plus my heavy periods to begin with, plus pre-existing anemia, made me get quite anemic during every cycle. I was put on a medication called tranexamic acid for during my periods to help slow the bleeding. Nothing was looked into, like endo at that point, just the symptoms were treated topically, essentially.
My pain continued to being constant rather than just during/around my period. I sought out further help from my now gynaecologist, and she put endometriosis out as a possibility. Tons of symptoms matched up, and it seemed likely.
Keep in mind that at this point, I was not out to my healthcare team as being non-binary and trans. I dressed more masculinely than femininely, but I was still treated as a cis woman. I was scared to come out for fear of rejection from my doctors or being treated differently (negatively) by them, which is a common occurrence for some trans folks. You need to choose who you come out to strategically sometimes, because you have to put your health and safety first.
In February of 2019, I had my first diagnostic laparoscopy with my gynaecologist. She only looked at my reproductive organs, saw no endo, and that was that. I was told in the recovery room that no endo was found, and I cried; mostly from frustration, not because I want to HAVE endo, but I just want to know WHAT is going on with my body so we can name it and start treating it appropriately.
It’s now September 2020 and I have no further answers. My gynae now thinks it might be deeply infiltrating endo (DIE), but has been skeptical to do another lap. She wanted to rule out bowel issues with a sigmoidoscopy first, which I had last month, so I’m hoping she’ll do another lap now and look deeper this time.
Sometimes I feel like my healthcare team can’t hear how loudly I’m screaming for help and answers.
I came out to my doctors earlier this year, around January or February, when I decided I wanted to go on testosterone. I had my first injection on February 4th, 2020 and have been loving the changes in my transition. My doctors were all accepting and very good with my coming out and request of use of a new name and pronouns, especially my gynae. The problem though, is that I was basically told that IF this IS endo, testosterone should basically fix it. She said “usually I see trans patients with endometriosis when they first go on T and then not again until they want their hysterectomies” and that just felt really weird and uncomfortable to me.
I felt like T was described as my “magic cure”, and also she kind of assumed after that I’d want a hysterectomy just because I’m trans. That’s not always the case. I felt put back in a box that I had just struggled to free myself from, which is so exhausting to have to keep breaking out of.
At first, the T did help. I felt relief and no pain for a month or two.
And then it all came back with a vengeance. And it hasn’t stopped since, despite my testosterone dose increasing twice since my starting dose. Technically against my doctor’s perception of what is happening, but I’m also not alone in experiencing this kind of continuation of symptoms.
I joined a trans-focused/inclusive endometriosis support group on Facebook called “Endo Knows No Gend-O” and it has been so nice to be in a place where I can ask questions and explain symptoms amongst other trans and gender diverse folks who may also be having experiences similar to my own. The group also has some cisgender (if you identify with the gender you were assigned at birth, you are cis, basically the “opposite” of trans) folks, but everyone is so kind and respectful and willing to share and help, it has been an extremely useful tool to me. Through this group, I found out that there are other AFAB folks on testosterone who did not experience relief from their symptoms due to their prescribed hormones. I felt seen, less alone, and like maybe this is it; maybe I’ve figured out what’s wrong with me. I had hope again.
Fast forward to this past week, where I was in the ER three days in a row. I was diagnosed with a bladder infection on the very first visit, given antibiotics, and the symptoms returned and got worse so I went back after finishing the antibiotics. Second doctor said yep, you have a bladder infection, prescribe me another antibiotic (which I ended up being allergic to, resulting in a couple more ER visits for that due to breathing difficulties), which also didn’t reduce the symptoms and resulted in me coming back to the ER with even worse pain that I couldn’t stand, and the doctor told me that my urine from the first visit didn’t culture anything, so I never had a bladder infection. Instead, he thinks that my endo (if that is what it is) is getting worse and maybe creating more adhesions, but more or less it was just Endometriosis causing a ruckus in my pelvis. I felt validated that he saw my potential Endometriosis diagnosis and added one and one, because many ER doctors haven’t done the same.
Preferred name or pronouns
Another thing that not a lot of doctors here do is ask for a preferred name or pronouns. I’ve been asked exactly three times in all of my ER visits while being chronically ill. It’s hard to come out to people, especially to medical folks for me like I mentioned earlier, but to go to the ER and have to constantly come out to nurses and secretaries and doctors and student is so, so tiring and often I’m not focused on that while I’m writhing in unbearable pain, but I do find that it’s a very positive aspect of my visit and honestly helps my recovery to be addressed properly. This last trip, the med student asked, after seeing I am on testosterone and probably saw my facial hair around my mask, my preferred pronouns and what name I use, and wrote it on my chart. I was addressed properly the entire visit and felt very validated and like I was respected.
During this same visit, the med student also requested to do a pelvic exam, both external and internal with both her fingers and a speculum. It was painful, but she was respectful both with the pain she was causing as well as ensuring to not gender my body parts too much (without my request, but I was grateful) to make me socially uncomfortable as well as physically. This was a great experience and I was respected from beginning to end, and was honestly basically the ideal ER situation for me, if I had to label it like that. Unfortunately, these trips are few and far between. Even amongst folks with endometriosis.
Endometriosis is incredibly gendered towards cis women. The language used in both medical resources and support groups alike hang onto the term “women” like it’s a raft and they’re lost at sea. Everything is gendered around terminology, from anatomy to support groups alike, using phrases like “endo sisters”, or even “cysters” (often used in PCOS related circles but it all can overlap). I’ve already had to declare myself not a sister in my family because I am not a woman, doing it over and over online takes a lot out of me, especially when there are people out there who are of the strong belief that sex and gender are the same thing (fun fact: they’re not) and that I must automatically be a woman because I have “women’s parts.” That’s incorrect. I am Milo. I have Milo’s parts.
Fighting a chronic illness itself, plus fighting for a diagnosis, plus working full-time, trying to live a somewhat normal life, and be a pet parent: it’s a lot. But factored into that is how I also constantly have to advocate for myself in my daily life, online and in person, with doctors and friends and allies and strangers, just to get basic human respect and courtesies (ie. using the name and pronouns that are reflective of my life, choices, and experiences) just adds another layer to the difficulty of navigating services and life in general as a non-binary trans person.
How can you help?
If you’re asking how you can help, I just want to thank you for being willing to help folks like me in the world. One step is to use less gendered language; stop calling menstruation and endo “women’s” things, because they don’t solely belong to women alone. Freeing up your language to make it more inclusive can be difficult at first, but I promise you will make people around you more comfortable.
Another thing you can do is to be an ally! Standing up for your trans and gender diverse friends without being asked, and while your friend is there or not, is so important because using your position of privilege to highlight and uphold trans voices is very important (just make sure not to speak for/over them!) when we are marginalized, even amongst the chronic illness community.
A final step you can take is to simply learn! Read those LGBTQ+ articles about endometriosis, pelvic pain, etc. even though the key theme may not apply to you directly. Do some research on gender neutral pronouns and the variety of genders out there. What better way to learn about things we don’t know than to educate ourselves! In general, it’s good to seek out this kind of knowledge on your own, Google is a great tool usually. Also, don’t take it personally if we don’t have the energy to explain everything to you.. we have to explain a lot of things to a lot of people, as you can tell from my post here. (Explaining what being trans means on top of what endometriosis is, and then explaining how I’m not a woman and my gender intersects with everything? Oof, exhausting) We love you, but please don’t rely on us to be your personal teachers; that takes a LOT of emotional energy that we may not have. “Love someone trans? Book in hands.” is a quick way to remember.
Thank you so much for reading! I hope my experiences shone a little light on a subject you were unaware of, or never thought about before. We are all humans going through this tough life (especially 2020, amirite?) and we all need to be compassionate with each other.
Nothing but love,
You can reach Milo on instagram: