TW: dead, suicide, substance abuse
Hello
I’m starting this series of publications as a way of registering my case. If having an AVM is already a really weird condition, having one as a transgender person, is basically a cruel joke from nature. Not only is the nature of both conditions, but the way they both interact with each other, that causes some complicated scenarios. Here some of them:
- Hormone Replacement Theraphy: Due to the way AVMs response to hormonal fluctuations, HRT(specially estrogen) is highly adived against as it is known for stimulating the growth of the malformation and rising the risk of complications and rupture. Any cisgender woman during their menopause will be advised to stay away from HRT. But for trans women, HRT is not only medication, is a VITAL NECESSITY. Transitioning is the main goal for most trans people, and gender affirming care is highly linked with a decrease of suicide and severe mental health issues in transgender population. This two combined cause a really delicate situation, as HRT, the thing that is suposed to save your life, is also something that could kill you.
- Lack of access to healthcare: Many doctors to this day, don’t feel comfortable interacting with trans people, not only in areas related to hormones or sex, but in general. One of the main issues I faced when finding a propper neuro, was finding one that was open to the topic of me being a trans woman. Neurosurgery is a really complicated field of medicine, and it takes decades to become a skilled performer. But with age comes a tendency to root for conservative ideas, and as I tried to move into the “Being an AVM patient” world, I usually found that the top neurosurgeons were usually old and mostly traditional men. Just to put an example, the neuro I was set under is known as the best in my country, with thousands of cases of AVMs and similar conditions under his experience. Yet, I had to explain to him what being transgender is. And he was not comfortable.
- Stress: One of the many pieces of advice we have all gotten from our neuros, is to keep stress levels down, as it could rise blood pressure. Well guess what baby: THE LIFE OF A TRANSGENDER PERSON IS CONSTANT STRESS. Dysphoria, rejection, discrimination, bullying, lack of work oportunities, poverty, substance abuse, lack of acces to healthcare. I, to this day, still haven’t found a single trans person that is not f*cked up from their head, and I include myself. And that oc, doesn’t help the AVM. Add to that that medication like antidepressants or ADHD(which is pretty common among trans people) medication are know for increasing the risk of stroke.
As you see… it’s a mess. But even with all the risk, I’m choosing to keep going, and decided to start hormone replacement theraphy, in order to become the person I was suposed to be from birth. And here is my journey:
I am a 22 year old transgender/non binary woman living in central america. I cracked my egg at 17, and been socially transitioning since I was 18. On december 13, 2023, I was diagnosed a grade 8 AVM after a seizure I suffered while visiting a theraphist. Two months later, I had my first appointment with my neuro, under the public healthcare system of my country. My neuro forced me to stop using illegal substances(as I was an addict at the time) and told me hrt was not recomended under the condition of an AVM. Despite this, he gave me an appointment in the endocrinology aile of the hospital, so I could discuss this with an hormone doctor, as an MRI had to still be performed to see the actual nature of my AVM. Fast forward 2 days, endo told me that hrt was a big risk in my case, but said the MRI still needed to be done. He put me on testosterone blockers(200mg spironolactone a day) and 150mg syntetic progesterone a month, appart from 3 pills of anticonvulsant phenytoin a day.
The months pass, and my life was basically over. The news of a time bomb inside my head, not being able to access gender afirming care and the lack of drugs I was used to do everyday to cope with my issues, had me absolutely broken. I was so down I wasn’t able to get out of bed, and the only reason I didn’t try ending all right there, was the hope of a positive result from my still to come, MRI.
And well, october comes. MRI time. My AVM was deemed 100% untreatable, due to it’s size and location, results that would be later confirmed by a second neuro and Barrow. But as it presents a decent level of stability, my doctors discharged me, telling me to just forget about it… Thing is, as my first neuro was too conservative, as I had already mentioned, he didn’t say yes or no on the hrt topic. Still, due to the nature of my AVM, endo said “Let’s go”. Added on top of the progesterone and spiro regime, 10mg estradiol valerate were added to my blood, once every 30 days.
Month’s pass, and changes start to happen. Softer skin, lighter hair, decreased strenght, decreased libido, and breasts start to develope. My mood, even under the knowledge I could be perfectly comiting a long term suicide, is better than ever. For the first time in my life, I finally felt what it is to be alive. Add on top, I found a new neuro who was open to talkimg to a trans person. He told me about the risks of hrt again, but also explained how due to the nature of my malformation, chances of complications are low. Still, my avm needs to keep being monitored to see any adverse effects and have a chance to correct them. I… was good.
But things have been far from perfect. Couple months under hrt, I was diagnosed innapropiate sinus tachycardia, a condition that causes a peak in heart rate under any postural change, giving me constant tachycardias, dizziness and chest paint. Rn, July 2025, I’m still recovering from it. Second, talking with other doctors and trans people, I came to realize that the hrt regime I’m taking on the public system could be actually damaging me, due to the useful life of E valerate being too short to be kept on for a hole month, causing me an unstable transition and rising the prominence of hormonal fluctuations. Due to all this, I have decided to move to a DIY regime under the supervision of me and a new endo, possubly before the year ends. And on top of that, I had several relapses on alcohol were I ended up heavily drunk and smoking cigarretes. I have promised myself to stay sober from alcohol and got some friends helping me on that.
Moreover, I’m far from being ok rn. Depression is consuming, and lack of medication for my disorders is leavng me exhausted. But I look forward to the future. In the last year I had a lot of time to think about life, and I can say, I have come to accept my dead. Rn my situation is an experiment, as everything could go fine, or go terriby wrong. But if something is certain, is that I am not stoping my transition. These months on HRT have been the best of my life, and all my body knows it. I’ve got to known other amazing trans people, started dressing as I want, and expressing myself without shame. Hell, I even started doing some weed here and there cuz, why not? It’s my life! Not that I’m waiting to be treated, and if I enjoy something, even if its risky, this is still the only life I will ever have to experience it. If I have to die in the process to be who I am, even if I’m not living long, I’ll do it. I’m not going back!
This is for now all my journey. A new MRI is on the horizon, and changes to my regime and life. I will make sure to update my case, for every other trans person that has the misfortune of dealing with a brain AVM. See you in some months(or no lmao). Hugs!