A Long Road to PCOS Diagnosis: One Trans Patient's Story

trans-pcos-storyAs a member of the LGBTQ+ community, finding quality, inclusive healthcare can be a true challenge. Sadly, for trans, non-binary, and gender non-conforming individuals, discrimination in healthcare is all too common. According to Lambda Legal”s “When Health Care Isn’t Caring” study, 70% of trans and gender non-conforming patients surveyed have experienced discrimination in healthcare because of their LGBTQIA+ status. This trans patient’s story shows just how crucial it can be to find a knowledgeable doctor and an inclusive practice to get the care you deserve. 

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A History of Missed Diagnoses: Drake’s Story

Let me start off by introducing myself. 

My name is Drake Oliver Athey, and I am a 31-year-old transgender male from a small town in western Nebraska. I am a PCOS patient, and this is my story.  

Flashback to 2012 – after suffering a few debilitating panic attacks, involving multiple trips to the emergency room thinking I was having a heart attack, I knew something wasn’t right. The only way I can explain what I was experiencing is that my body didn’t “feel right.” 

Looking back now, I am sure the doctor and nurses on duty thought I was insane, but in my mind, all I knew was that something felt wrong with me and that I needed to find out what it was. These panic attacks happened five times in the span of a couple of weeks – at the same time, I was seeing a doctor for some other health issues 

After six months of going to my regular doctor and getting a barrage of tests done, I was diagnosed with gastroparesis – but they couldn’t tell me why. My doctor then told me that she didn’t know what was wrong with me and sent me to a surgeon. That surgeon put mon some medication to help with the stomach issues, but they didn’t help with that feeling that “something was wrong with me.” 

At that point, I had physically and mentally given up. I was anxious, depressedand couldn’t get work because I couldn’t get out of bed and live a normal life. 

Struggling to find a good doctor?

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A Glimmer of Hope

In 2013, after months of no improvement, my boss recommended to me a doctor she had been seeing herself. She said that this doctor was knowledgeable and trustworthy and that maybe she could help me figure out what was going on with my own health.

I was reluctant, but the next day I called angot an appointment for the same day. She performed the usual tests: checked my vitals and weight, then did a bunch of bloodwork. I was on my way shortly after.  

At my next appointment, the first words out of her mouth were, I know what’s wrong, and why you are having so many health issues. I just started bawling – that was the only emotion I could possibly feel after the last two years of literal hell. I finally calmed down and said, “Lay it on me, doc.”  

She said, “You have Polycystic Ovary Syndrome.” 

“What is that?” I asked with a confused look on my face. She explained what it is, and I was in complete shock – even at the age of 21, I had never heard of this syndrome that affects so many people.  

Note: I say people because many individuals and the PCOS community at large link this syndrome to women but not all people who have PCOS identify as female 

PCOS Affects Transgender Men Too

Personally, while I identify as transgender and have not medically transitioned, I do identify as male and yet still have some of the same PCOS issues as many cisgender womenI believe representation of the PCOS community should not just be tied solely to cisgender females in order to be fully inclusive. 

Even at 31, after being diagnosed nearly 11 years ago, I still struggle to understand PCOS – the syndrome is mindboggling. I don’t feel that I have many of the “normal symptoms” related to PCOS. I am overweightbut that is nearly the only PCOS symptom I actually have – which may have contributed to the time it took me to get an accurate diagnosis.

I wish more research was being done, as all of us who have been diagnosed with PCOS deserve answers when it comes to this sometimes debilitating disease.

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Doctor’s Note from Dr. Ilana Ressler, Illume Fertility’s PCOS Team

PCOS can manifest itself in many different ways, and be different for each individual. A person must have 2 of the following 3 criteria to be diagnosed with PCOS (in exclusion of other diseases, ruled out by simple blood tests).

Oligo-ovulation or anovulation: not having a period, or having long or irregular cycles
Hyperandrogenism: higher levels of testosterone, which can show up either in bloodwork or through physical markers such as acne or excess hair growth in specific places
Polycystic ovaries: (which may show up on ultrasound) – when ovaries are enlarged and contain many small follicles.

Finding a doctor or clinic that is LGBTQIA+ inclusive and knowledgeable is vital.

Unique Challenges for Trans Patients With PCOS

It is clear to me that many doctors are highly uneducated about PCOS. If you have a few missed periods, they prescribe birth control and never really talk about it again as long as your periods are on track. (Editor’s note: Irregular periods are a common symptom of PCOS, and birth control can be one treatment for this disorder – but we need to do more to support each patient holistically, as each case can present differently.) In reality, PCOS poses more threats than just a few missed periods. 

We deserve healthcare that is actually going to improve our prognosis. And we shouldn’t have to fight so hard for quality healthcare. 

As a member of the LGBTQIA+ community, I know it is hard enough to get any type of healthcare. 

A new doctor’s appointment involves constant worrying whether the doctor is going to be accepting or discriminatoryor even knowledgeable about the health issues we may be experiencing. 

Personally, every time I see a different doctor, I’m full of anxiety and panic. It’s hard enough going in as a transgender male, and it makes it even worse when you go in stating you have a syndrome primarily linked to cisgender women. I want to walk into a doctor’s officeconfident my health needs are going to be met – no matter my gender and sexual preference! 

Sometimes, there are no words to describe how PCOS can affect our lives, but no matter how we identify, we are all in this together and deserve to find answers and support. Stay positive, keep your head held high, and never let the world tell you what you’re capable of. 

More Resources

Note: Our partner clinic Illume Fertility has a robust PCOS Program offering holistic and traditional treatment options for all individuals with PCOS! We encourage you to check out the resources below for more information, or book a consult today.