Why is it so hard to make an appointment?Posted: October 27, 2016 Filed under: mental health, Testosterone | Tags: doctors, endocrinologist, genderqueer, hormone replacement therapy, lgbtq, medical treatment, mental health, non-binary, queer, testosterone, therapy, trans, transgender 7 Comments
I made a decision that I’d like to get on testosterone injections, temporarily. I’ve thought on-and-off about it for a while, and I think the idea solidified over the summer, like, once I’m back to normal after recovering from surgery, I’m going to look into it. Unfortunately I knew I couldn’t just get this from my Primary Care Physician – she had been OK with maintaining my androgel dosage, but not comfortable with changing / increasing anything.
On September 26, I called the local LGBTQ+ health clinic and explained what I’m looking for. They said they could get me in on January 25th. I said, OK set the appointment, but in my head, I was thinking, this is a ridiculous amount of time to wait. (And, I know, I know, relatively speaking, it’s not at all, especially looking at it from a global perspective. But, if I think I can do better than that, why not try?)
From there, I looked up endocrinologists in my area and what types of care they covered. I found one that hypothetically seemed like a good fit, and I posted about it on the local transmen Facebook page. I got one comment that yeah, she and her staff are good, and a few more comments agreeing with the inefficiency of the clinic. In terms of vetting, that seemed good enough.
I called her office on September 27th and was told I’ll need a referral from my Primary Care Physician, and then once that’s in, I should hear back within a week. I called my PCP’s office, and they said they’d send that over right away. I then waited 10 days before calling. I was told the referral didn’t get received, huh, not sure, can you have them send it again? Got that done, this time with a confirmation plus I got a copy, and waited another few days. I got a call from my PCP’s office, saying that the endo needs an additional referral, from a psychiatrist. GATEKEEPING at its finest. I would have been super pissed, and probably would have stopped trying to go this route, if it weren’t for the fact that I actually do have a psychiatrist right now. So although I hate that I had to do it, it wasn’t actually much of a hassle.
I emailed my psychiatrist (she was already aware that I was pursuing this), summarized the nature of the referral from my PCP, and asked her to also write a letter. I said that including pertinent information, like the fact that I’ve been on a low dose before, that I’ve had top surgery, and/or that I identify as non-binary would be great. She replied that she could write the dates she’s seen my, my diagnosis (meaning my mental health diagnosis), medications she prescribes, and mental stability status. “OK?”
I replied, “OK that’d be great, thanks.” Guess I didn’t want to argue or push it.
I then waited another 8 days (by this point, it was Oct. 25th, a whole month later and I still hadn’t secured an appt.) and called the endo’s office again. I was given a wishy-washy answer by the administrative assistant. That the endo is still in the process of finding more information, and she is currently booking out till January – they can get me in for January 10th. But at the same time, she can put me on a waiting list to get me in sooner. I asked, if I were to call and check my status, would that help me “jump the line”? (I didn’t actually use this phrase.) She implied that sure, that could help.
At this point, I took a step back and thought about what’s happening. So far, the endo got a referral from my PCP, and that didn’t include any history of care: just Female to Male transgender person (F64.1), chronic. In addition, they got information from a psychiatrist that I am bipolar, that I have been seeing her for 9 months, and that I’ve been stable during that time (relatively, this is such a short amount of time; it’s kind of implying that the rest of my “bipolar disorder” time is a wildcard.) I don’t want to get too paranoid, but this collection of information is not working for me at all. That plus the fact that it’s straight up inaccurate.
Feeling like the system is working against me, I decided to pull from my bag of tricks and email my therapist. If there’s anything that could help this stalemate, it’d be her. I relayed this whole series of events and asked her if she could also write a referral, actually filling in the background information. She replied in 10 MINUTES – such a refreshing change! and said crazy that this is so hard, and sure she’d write a letter, and is there anything else I’d want to make sure she includes?
So she’s writing a letter. My intent is, essentially, that this is not a new diagnosis, coming out of nowhere. That I’ve already been on T in the past, I’ve had top surgery, I’m in the process of legally changing my name, etc. So, this should be a continuation of ongoing care (timely, please!). I’m not starting from square one here. I imagine this endo has access of my medical records (?? not sure how that works), so if she looked into it, she’d find this stuff. I’m just having my therapist bring it to the forefront, which will hopefully change something?
Because, I feel like if it went the other way – my doctor sending the referral first on my behalf, instead of me going backwards to get this stuff covered, I would have been given an appointment within a more reasonable window. Not sure if that’d be true or not – there could be dozens of reasons outside of my control – maybe she’s just really busy. But, I gotta try…
Good on you for being persistent here! It’s awful how many hurdles they keep throwing up for you, but I hope you manage to get there.
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don’t get fed up and quit, just keep at it and persistent and it will happen, it drove me nuts too , but in hindsight, maybe all the hurdles are there as a test for you and everyone else…. if you are serious you will keep going, keep pursuing your goal, those that get fed up and quit , maybe they weren’t really ready for such a big step ? …. it sucks i know, but hang in there , sooner or later they are gonna say okay, come in and get a shot, and eventually you will be giving yourself the shots 🙂
Aargh! Having to ‘prove’ yourself again and again isn’t just dispiriting – it’s exhausting. I’ve had the bipolar diagnosis too, but I’ve been ‘stable’ now for four years. Constantly having to explain and justify my sanity can be humiliating too.
I have a question though Kameron – just something I’m trying to get my head around. My kid is trans and if he wants T before 18 in Australia we’ll need to go through the Family Court – which can take years and cost up to $30000. But I keep hearing about underage kids in the US and Britain getting T after a consultation or so. It doesn’t seem to correlate with your experience at all. Does it just depend on what State or province you’re in?
We seem to live in an age where there’s no rhyme or reason to who gets easy access to hormones and who doesn’t. People in Wales, for instance, seem to wait for years and years. Bleurgh.
Good luck Kameron.
Not Kameron, but I have some thoughts based on professional experience.
It seems to largely to depend on which guidelines a service provider uses rather than by region. We have doctors in Ontario for example will put youth on hormone blockers if they have supportive parents from as early as when they hit Tanner stage 2 development (there’s no medical reason to start them earlier.) They’ll start T usually around age 16 but sometimes a little sooner, there’s some case by case considerations. They don’t want to start treatment without parental support for fear it would cost he youth the roof over their head and safety, but many will work with the parents to navigate through their concerns. Other Ontario MD won’t touch hormone blockers, and require someone to be 18, have had 2 letters of support, etc etc.
It’s a rapidly evolving scene. When I began in my late teens, I wasn’t required letters from mental health providers but there was a 6 months “wait” for a quasi-real life experience type of requirement. The same clinic no longer has such a wait to initiate transition. I didn’t need any letters for chest reconstruction or hysto. And yet when I went to be approved for lower surgeries, suddenly, 6 years into hormones, having legally changed my name and sex marker years ago already, I was required to do 1 year “real life experience” (which involved me changing nothing at all about my day to day life, and I’d provided paperwork to support my legal name and sex marker change at my 1st appointment, just a waste of 12 months.)
I can’t believe it would cost you $30,000! I was reading how Australia requires a trip to family court for trans youth under 18 to start transition, it’s outrageous! No rhyme or reason indeed.
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Thanks for the insights! Your enforced waits sound as ridiculous as all the running around Kameron’s required to do. I don’t get it. If you ever look at the ‘gender critical’ sites (but probably don’t) you’d get the impression that doctors are handing out T and estrogen scripts like sweets. We all definitely need some regulation and standards of care inscribed in law :-(.
hey K! miss you. it’s so frustrating that there are so many hurdles to getting the care you need. as a person who deals with periodic bouts of depression/anxiety, i can say that if i had to go through all that, i might just give up and end up not getting the proper medical attention. i imagine that other folks with mental health issues run into the same problem, where it just seems too exhausting/overwhelming to keep hammering away at it. it should not be that difficult. anyway, my point is that i admire your persistence, and i’m glad you’re being proactive about getting the care you need. you always inspire me in many ways. love ya!
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Hey Amy, it’s good to hear from you! Yeah, I do feel like mental energy is a big part of it – like, I currently have been feeling really good, so I’m just going to keep plugging away. But I can most definitely relate to giving up because I can’t deal with how many hoops I’d have to go through. Yeah, there should be people who just advocate for those who need some help! In some cases, there are – like there’s this non-profit group called the Trans Legal Defense and Education Fund that helps people with name changes and other legal issues. There should be one of those for medical assistance, for anyone who would like help.
Love you too – let’s hang out soon!