I’ve been a part of an all-volunteer, community radio station for over two years, and it’s been an incredible experience, across the board. I’ve met a bunch of new people, learned how to use technical equipment, and have found my voice in a very fun way! The station is a combination of music shows of all genres, and talk shows covering an array of topics. I listen to a lot of them, on-and-off, while I work. A few weeks ago, a friend alerted me that one of the talk-show DJs was perpetuating a transphobic paradigm. I downloaded the show to hear it in its entirety, and then I decided to write him a letter in response. Essentially, he sought out a video from a certain Dr. Michelle Cretella and took her side, as she chipped away at the topic of puberty blockers for transgender teenagers.
I decided not to link to her video, here in this blog post, because I’d rather people not see it! But if you want to, you can totally search it out (and it would probably make the following letter I wrote make more sense.) I watched it. It was terrible.
Here is an edited version of what I wrote and had delivered to the DJ:
Dear [Radio DJ],
I’m a fellow DJ, and I’ve been enjoying tuning into your show for a while now. The first one I heard was all about the importance of eating healthy, nutritious foods, and I was totally into it.
Your show from two weeks ago, and your discussion about transgender puberty blockers as institutionalized child abuse, however, hit me right in the gut; I feel so strongly that I decided to write from my own experience in the hopes that it’ll bring up new considerations.
I found the video clip that you shared to be sensationalistic and oversimplified. It is not all of those things all at once: puberty blockers, “mutilation,” sterilization. It is a very gradual process, and it involves listening to the child at every step of the way, which, it turns out, is actually a worthwhile thing! Children start to understand gender at around age 3. If their gender is incongruous with their sex, it is certainly possible for them to start to feel this as young as they are. The key questions medical and therapeutic providers keep in mind, over time, is: are they consistent, are they adamant, and is it increasingly apparent that they are becoming more and more uncomfortable?
If so, preminary actions can be taken to alleviate these intense feelings, and none of them are “undoable” at this stage. Maybe the child wants to feel out what it means to be called a different name and be referred to with different pronouns. And then, possibly, maybe they want to switch back. No harm done. Children can be very much androgynous before puberty hits, as they are testing out what feels right. I can attest to this 100% – I was a tomboy who was often “mistaken” for a boy. It was vital for me to be able to explore this without much pushback.
Dr. Michelle Critella hit the nail on the head when she said, “If a child can’t trust the reality of their physical bodies, who or what can they trust?” This is at the crux of what it means to be a transgender person. When puberty hits, their bodies betray them in monstrous ways. Many of the changes that occur at puberty cannot easily be “undone.” Namely, voice drop and body/facial hair in boys, and breast development in girls. Puberty blockers essentially allow for bided time. More time to understand the situation of the child, now bordering on a teenager.
At this stage, the best thing to do is to keep options open as the child continues to grow into who they are. If they can put off puberty for a little longer, it can literally be a life saving pathway. Down the road, they may be turning to more permanent changes, such a surgery and hormone replacement therapy (taking hormones that fit with their gender identity.) And yes, “sterilization” is one of many factors that would have to be a part of the discussion (and that’s a complex thing in and of itself that I’d need to learn more about. Basically, there are options.) These choices, which are being made by both the transgender person and their family (ideally) and a therapist, are far from “institional child abuse,” because the alternatives are far more drastic. Suicide, homelessness, drug and alcohol abuse, physical and sexual abuse, brutal bullying, are all very real for transgender teens. If they are listened to, believed, and being guided through steps that help them holistically, there’s nothing better than that!
Being transgender is not a “lifestyle” and it’s not a choice. It runs much deeper than that. It is at the core of who someone is, and people grow into their true selves in myriad ways. If they start to know that pathway as early as the age of 3, then, yeah, that could be one of the ways someone gets to where they need to be, as they continue to figure it out. During your segment, you questioned, “Who are they?” “They” are transgender people and the allies who listen to them.
If you’re interested in continuing this conversation, I would gladly be a guest on your show. Better yet, it’d be amazing to get a group of transgender people with very different backgrounds to come on and speak from their own experiences.
Let me know if that could work out.
-Kameron, fellow DJ and transgender person.
I don’t have a gynecologist. I haven’t had one for probably 15 years. The reason for that is because I felt so out of place there, so I let that aspect of my health passively slip away. I’ve always gone to the dentist twice a year. I was really into chiropractic care for years, consistently. I’ve gotten eye exams. I regularly go to a therapist and a psychiatrist. I even have a primary care physician, and more recently, an endocrinologist. But I’ve neglected and avoided anything related to my junk (this is just my preferred term for what I got going on down there…)
My last pap smear was in 2012, and I went through that because it was a prerequisite for getting testosterone gel. That was enough of a motivating factor to go through that. It was super painful and anxiety inducing, but I had done it! Since then, there’s been no reason to get it done again, in my mind. Prior to 2013, I’m not sure how long it had been.
About a year and a half ago, I was on a panel with two other trans-people, in front of a group of health-care professionals, talking about our experiences with health services. I mostly talked about my experiences with top-surgery consultations, but during the Q & A, the three of us were asked about sexual and reproductive health. I was super open about how uncomfortable I am with this aspect of health care, and how I have avoided it. I even felt a stubborn pride about it – something like, “if I avoid it, that verifies how little I relate to my junk.” This really makes no sense whatsoever, and why exactly is this a point of pride? My two peers were much more proactive – they had had lots of experiences with making sure their needs and check-ups were on track.
Two weeks ago, I was eating lunch with a super close friend. She was mentioning something about her menstrual cycle and about how she needs to get her routine check-up. I told her how long it’s been since I had a pap smear, and she seemed aghast. I said I wasn’t going to be getting one either. She said something to the effect of, “But you have to.” She sort of role played a scenario in which hypothetically something scary is found, like HPV or cancer, that could have easily been avoided by just getting regular screenings. The emotions she was pouring into it were what got me. I kept going back and forth between, “OK, I will get it done,” and “No way never again!” The conversation stayed with me.
A couple of days later, I had a lump in my armpit. I’d never had anything like that before. My spouse told me I should get that checked out. This was something that was more straightforward! I could definitely go to the doctor for something like this! I called and got an appointment for the next morning. Then it dawned on me that I should be getting a pap smear. I waffled back and forth for a while, wondering if I’d be able to get myself to call back. I finally did, pitching my voice as high as I could so it would be apparent that this request would not be totally incongruous. Blah.
The pap smear was just as painful as the other times I’d gotten one, but I would say it was less anxiety-inducing. What helped me get through it was trying to stay present in the moment, in the room. I did this by talking with the nurse practitioner. “This room is cold.” “Please use the smallest one possible.” “This is really hurting.” Etc.
I gotta admit I do not know the exact reasons pap smears are important – what is being tested, etc. But I do think I will be more on top of getting them every few years from now on…
To top this all off, on Saturday we were out in the woods with some friends. Sunday morning, I felt something chafing on my chest, and when I looked, there was a tick latched in right on my nipple! Eeaughhhh!!! My spouse tweezed it and pulled it in half. Half of it is still embedded in my skin. I’m thinking it will work itself out on its own. She talked to our friend on the phone – he regularly gets ticks and gets them tested in groups, after he’s collected a bunch. So far so good but lyme disease is a scary possibility. Do I have to go back to the doctor?!
I surpassed my best guess at a timeline. When I started in January, I gave the whole venture 6-8 months. I thought I’d start getting uncomfortable with the level of masculinization by that time, and I’d stop. Not for good, just for a while, to level back out, and then most likely start again within another year or two. Something like that. BUT! I really like what’s going on. I like everything except for the facial hair growth, and that’s been pretty minimal thus far. Minimal enough to manage, without having to shave. I like my voice, the muscle growth, legs getting hairier, and clit growth. I haven’t noticed my hairline receding any further than it already has (I was on a low dose of gel for 3 years and saw my hairline change). And I really really really like the cessation of menses. I never had severe symptoms with that, but having it as one less thing, showing up to deal with, cyclically, is a really big plus.
Today was also my 3rd appointment with an endo, and I have a new one now (the one I started with moved to Oregon). I liked her immediately. She wrote down notes. She was curious if my psychiatrist sees other trans-patients, and if I like her, so that she can have someone to refer others to. Same with my therapist. She wanted to know about my experience with my top surgeon. I gave her my full report. She just seemed to really want to get a grasp on who’s who within trans-health, and to glean a lot of that information from actual patients, which felt really validating.
I asked her questions about needle gauges, and she asked me if I was interested in sub-cutaneous injecting. I said, “yes!” even though I hadn’t thought about bringing this up in particular, in advance. It’s just something I’ve heard other trans-people on testosterone talk about as an easier and less painful route. But I assumed it was something totally different, like a different style needle, possibly a different type of oil, etc. I learned it’s not – you just use a significantly smaller needle, and inject it into fat instead of muscle.
This next paragraph is going to be kinda graphic, heads up if you have a needle phobia! So, imagine using a fairly long and thick needle and just jabbing that straight down into your quad muscle, perpendicularly. And then having to push the oil out of the syringe, which does take some force because the oil is thick. This has been painful, to varying degrees, and often there is blood. Sometimes my muscle is sore that night and into the next day. Now, instead!!! I’m gonna get to use a thinner needle, and just slide that in at an angle, but fairly parallel with the skin. It’ll only have to go in a half inch or so, not one-and-a-half inches. It’ll still be hard to push the oil out and in, but just the fact that it’s a layer of fat and not a thick meaty muscle sounds pretty good to me! I can’t wait to switch over! I’ll have to watch some videos or something. The endo did suggest I could come in and a nurse practitioner could show me, but I think I got it.
The one thing about the appointment that felt a little off was she gave me a quick exam, with all my clothes on. This was in itself was fine, although I was caught a little off guard.. She checked my lymph nodes, breathing, throat, etc. Then she said to lay down, and even though I was wearing a t-shirt and hoodie zipped up all the way, she kind of put her hands under there and said she wanted to take a look at my chest. Maybe she could have asked. I probably would have said sure. But she was like, touching my nipples and commenting on skin retraction. And it felt weird. It’s not like it was lingering in a bad way. I pretty much immediately got over it. It was just very unexpected.
And, like always, here’s my face:
This actually happened a few months ago – she was fired from a nearby college on May 24th. It’s only now hitting larger news outlets because there are now three state-level civil rights complaints, trying to get her re-instated. I read about it in the newspaper while at work, yesterday.
She was treating transgender students who came to her with a previous diagnosis. She was definitely qualified to do so, having gone through many hours of training in trans-health care, attending a conference sponsored by WPATH (World Professional Association for Transgender Health), etc. She was doing this at the college’s expense, which just makes it seem like it was condoned by the college, right?!!
WPATH’s stance is, “With appropriate training, …hormone therapy can be managed by a variety of providers, including nurse practitioners, physician assistants, and primary care physicians.” Apparently, this was outside the scope of what the Student Health Center did, but this was never communicated to her. The termination came from out of the blue.
Hormones are prescribed for other reasons at the health center, with no problem. Birth control, ovarian disease, and low testosterone are all treated regularly.
Interestingly, the information on the Student Health Center’s website changed two months after her firing: While it had said, “comprehensive primary care,” and “continuity of care,” it now says, “basic primary care” and has no mention of continuous care. At least they’re being accurate about the downgrade???
This just angers me to no end because this doctor took it upon herself to step it up and become well versed in an area that, for whatever reason, makes so many medical professionals so squeamish and stand-offish. And if this was something she did of her own volition, and it was well within the standards of care, then back it up! What was the university afraid of? There are standards in this field, despite the fact that the medical professions are grotesquely behind the curve with this, in general. A bunch of transgender students were left in the lurch.
The college’s associate vice president of student wellness was quoted as saying, “We are fortunate to be situated in [city], where there is a strong medical community rich with resources.” As if to say that students can just go elsewhere. I’ve tried “elsewhere” around here, as an adult, and it was a super-frustrating process. If I think back to who I was at age 18 or 19, disrupted care at the on-campus center in this regard would have definitely sent me into a tailspin and/or mental health crisis. I would have felt like I didn’t have the means or psychic energy to find out another path. I would have felt deeply cut, in a personal way, by my institution’s sudden change in policy.
It just seemed like this college was at the forefront – it could have laid the groundwork for other area places of higher education to follow. And then it just took a huge leap back into the wrong direction. One step forward, two steps back sometimes I guess, right?
I had a bunch of problems with getting continuous care. I was first getting hormones from a sketchy-ass doctor. I finally felt so disgusted with his practice that I sought out another path. I went to one specifically because she was listed as being LGBT friendly and knowledgeable. That ended up being wrong basically – she told me she didn’t know how she had gotten on that resource list. I had to have a pretty heated conversation with her – her stance first was that I could come to her for primary care, but I should continue to get my hormone prescriptions through that other doctor. I told her I wasn’t going to do that. She told me this was beyond her scope and if she had a male patient with low-testosterone, she would not even monitor him for that reason.
We finally landed on a compromise. She would continue to prescribe what I was already at, and she would monitor that. If I wanted to make any changes though, I would have to do that through other means.
When I did want to make other changes, I first got on a long waiting list for an LGBT-specific clinic. I kept hearing negative stories about the quality of care there, so I decided to also try another approach: an endocrinologist. I had to get on a long waiting list for that, as well. I’ve been going there since January, and so far, I’m happy because I don’t have to deal with the PCP anymore. Getting an endo was not like adding yet another medical professional and another series of appointments. It was more like, instead. Unless I get like, a rash or something, then I’d go back to my PCP.
All of this was hard enough, and I am an adult who has worked really hard at advocating for myself. Thinking back to who I was as a student I would have withered under this kind of stress. Students need to be able to access trans-specific care on their campuses. Period.
A note about the lack of specifics in this post: I left out the doctor’s name and the name of the college, city, etc. because that’s been the way I’ve always operated with this blog, in order to keep some anonymity. I’m not sure anymore whether it’s all necessary, but I’m not about to try to figure that out here-and-now. If you’d like specifics and the names of the sources I got a lot of this information from, just leave a comment, and I’ll get back to you!
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…
4.5 months is an odd point – but it seems worthwhile to write now, mostly because within the last couple of weeks, sensation has been returning at a faster rate. and I want to make note of that.
I was really afraid I was going to be left with a huge amount of sensation lost permanently. That’s definitely what it felt like for a while. Despite being fully aware that it takes months, years even, for nerves to come back in fully, or to the extent that they are going to.
It was just really uncomfortable to have something touching anywhere around my chest, because of the not feeling of the thing. I didn’t even really want to be touching it myself, but I did / do, every day, to massage the areas around the areolas. I worried about carrying boxes when I came back to work, but that actually was fine; I’m not using my chest as a balancing point as much as I thought I did – it’s more abs, I think.
Earlier, I’d say that there was numbness for about an inch radius around each nipple. And it seemed to stagnate there, for a long time. Now, I have feeling everywhere except the nipples. Is it the same kind of feeling as before? Not quite, at least not yet, on the right side especially. Light touch feels normal; pressure still feels tender in a lot of spots. I’m super happy about this progress.
Something else that is slowly changing, I’d say, is my overall expectation. I’m still not happy with the results, and I’m sure I will eventually get a revision (nipple revisions if nothing else). But it isn’t something that bothers me. I’d say I went through a week (OK maybe 10 days) of being really down and disappointed, early on. After that, it felt like, OK, it’s actually good enough, for now, so no need to keep harping on it.
I got a lot of feedback that it’d be best if I just lowered my expectations about how good it could look. Many cis-people have weird chests, many trans-people have botched chests. I had mixed feelings:
– I’m totally grateful for how it is, as opposed to how it was. I am continuously happy about it, every day. Can I be happy about it and still want it to be better? Definitely. It can be tough not to compare it to other chests I’ve seen, but, in general I’ve just been comparing it to how it was. And in that regard, I’m psyched.
– It’s true that many people end up with really bad results. And I feel angry about that, like, why aren’t the standards better yet?? But, I know nothing about it, from an anatomical perspective, and I’m sure there are so many factors that go into how well it can be executed, beyond what we commonly know about.
– I saw a lot of shirtless men this summer, and paid a lot more attention than I used to. Many men have chests that are not quite desirable, but every one was symmetrical. I know it’s common for women to have one breast bigger or shaped differently from the other, but I gotta say, I’ve never seen an asymmetrical cis-male chest.
Overall, I think it helps to hear that adjusting your expectation will help in the long run (even if the knee jerk reaction is something along the lines of, “butt out!” Haha.) I strongly believe this is happening naturally, without me trying to change the way I am thinking.
I thought that since my chest was so small, it would be easy to get it right. Now I’m thinking, whoa, no, it’s way more complicated than that, and I barely know the first thing about it.
What I do know is that my surgeon does not offer free revisions (although the cost I was quoted, more or less, seems reasonable). Also I know it is not a priority for the foreseeable future. I imagine that within a year or two, I will have consulted with a few surgeons (I’d definitely hesitate to go back to my original surgeon) and I’ll be moving forward from there. I’m in no hurry.
I recently connected with Nic and Cat, a duo based in Philadelphia, who have been working super hard for about a year, creating an app for anyone who is LGBTQ+ and is looking for a health care provider. It will be simple, straightforward, user-based, and reliable. A beta version will be available soon, and Nic says, “the more the merrier, because once we’re beta testing we want to have as many reviews on there as possible–that’s what’s gonna make the app useful.”
I already signed up. You can too! At: https://qspacesapp.com/qreview/
I definitely will have a lot to add, from
The first primary care doctor who proscribed me T,
The terrible consultation I had for top surgery in my area,
and, yeah, there will be much more. I have thoughts on my current doctor. Thoughts about the surgeon who did do my top surgery. Thoughts about my sometimes therapist and my psychiatrist (refreshingly, those two are all positive.)
I asked Nic a few questions to get a better sense of who they are and what their project is all about…
K: I’m curious, do you and Cat have experience in web design? Or, what are your backgrounds?
K: Was there a specific moment or incident where you said, “We need an app to fill in this void of information.”
Physically, I feel 100%, and I’ve felt that good for the past month – like in terms of lifting, stretching, and moving my body. Aesthetically, I’m still not happy, but I’m starting to get used to / feel OK (for now!) with how things look (I’m sure I’ll be looking at revisions down the road, but I’m not going to worry about that right now.) Sensation-wise, I’m a little worried, but I know it’s still early on. My nipples are still numb, and it feels numb/tender within about an inch radius around both nipples. I’m looking into making some gotu kola oil to massage into the tissue; apparently that’s supposed to help with nerve damage. Better late than never, right?
I have my 3 month follow-up appointment with the physician’s assistant on Tuesday, via Skype, and I’m not really looking forward to that…
It’ll be fine…
Otherwise, I’m super happy. I’m so happy to be wearing what I want to wear and also of walking around the house without a shirt on (which I did do, previously, but not as much, and not while my spouse was around.) A couple of weeks ago, I wrote to a friend, “I did not expect to feel much different other than a cerebral satisfaction regarding being able to wear anything from now on. But it’s more of a gut- level confidence: I feel like my posture is different; I walk differently, I carry myself differently. This is what makes it all worth it.” That pretty much sums it up.
Also, I’ve been using 2 pumps of Androgel, daily, for 6 weeks now, without any doctor supervision. I just had some extra bottles laying around, and I felt like starting again (after being off of it for… 6 months?) I contacted my local LGBTQ clinic via email (which is new for me – previously I’d been getting Androgel from a doctor who was reluctant to be a part of my trans-related health) but after more than a week, I haven’t gotten a response. So, I plan to call soon. I’m thinking about trying injections, short term. I think I’ve gotten about as far as the gel will bring me, and I STILL want to look and sound slightly more masculine. Like, enough so, so that people are confused, or at least they’re hesitant to actually say “ladies.” So sick of the “ladies.” It happened again today. Blah.
About 10 days ago, my breast tissue started to feel inflamed and tender. It wasn’t in line with my menstrual cycle, and it hurt way more than that would, anyway. As it got worse and not better, I wondered if it was some strange manifestation of a psychological reaction to my upcoming surgery. I wasn’t feeling stressed or anxious about it, but was this psychosomatic? Then a patch of skin below my left armpit started to really burn and sting, as well as the skin around my shoulder blade.
Then 3 days ago, I broke out into a rash in those areas… and my boooobs still hurt a lot. I was able to get in to see my doctor yesterday, and… it’s shingles. She said that would also be causing the breast tenderness, because of where it is. Shingles flare up along a line of nerves starting at your spinal cord, and wrapping around to the front of your body – so that you only get it on one side, within a range of area. It’s like chicken pox, redux. Everyone I’ve mentioned this to says, “You’re too young to get shingles!” All I know about it really is that Carrie Brownstein got shingles while on tour (from reading her memoir, Hunger Makes Me A Modern Girl,) so I guess I’m in good company.
I got 2 prescriptions to help with the pain and the duration. We’ll see – it should start clearing up within a week… I’ll be going back in 2 weeks for my doctor to take a look. If this had happened close enough to my surgery, it would have had to have been postponed. That would have made me really upset! According to this timeline, I should be OK. It’s just so mind bogglingly coincidental that this suuuper painful inflamation occurred right in the area I’ll be having surgery. I’ll let you know which ends up being more painful – this or surgery!
Other than that, I feel relatively prepared. I just had my pre-op appointment via phone call a week ago, and that has put things into motion for getting everything ready. I got a huge packet in the mail of things to sign (informed consent), directions for when to do what, etc. I made a checklist to make it easier.
Pay surgeon – I still have to do this. I exhausted all info about my insurance plan, and there is no way insurance would pay for any of it. I expected as much all along, so, no big blow there…
Get parking permit – In process. My spouse and I will be in Ardmore, PA for close to 48 hours, and we need a temporary parking permit to park in the municipal lots.
Get therapist letter – In process. My therapist just sent me her draft last night, and it looked good to me, so she should be faxing it at some point today.
Get prescriptions filled – Done. This could be done well in advance, so your meds are ready for you when you need them. I needed to get a pain med and an antibiotic.
Get lab work – Done. I did it yesterday morning.
Go through a pre-op appt. with primary care physician – Done. I did it yesterday morning. I killed 2 birds with one stone – this plus shingles diagnosis all in one. She will be filling out a form to clear me, despite the shingles, and faxing it in.
Send in consent forms and everything else that needs a signature by me – I gotta get this together. I think I need to re-print certain pages and figure out what I still need to read through.
Take photos of chest – I did this for the surgeon already, but I might want to re-do it. Not while I have these shingles though!
I feel ready for surgery, mentally. Emotionally, I’m wondering if something is going on (shingles are brought on by stress, which I’m not actually feeling). I set up an appointment to see my therapist (who I haven’t been seeing lately), just to cover all my bases. It can’t hurt!
When I started moving forward with the process of getting top surgery, I did so with the assumption that I would be paying in full out of pocket. My therapist had looked into coverage a while back, for me, and told me it was not covered. Still, though, times are changing, and I had a sliver of hope that my insurance plan might have been updated. In my state, government funded health care now fully covers transgender related treatment and surgeries. Maybe mine would, by now, too?
Yesterday, I was on the phone with a customer service person for over an hour. At first it seemed promising. I gave her the category number – F64.1 (gender identity disorder in adolescents and adults) and the code for the surgery type – 19304. She said, “Double mastectomy?” and I said, “Yes.” She then proceeded to try to find out whether the surgeon was in network or out of network. She told me that if she’s in network, I would be paying a total of $70. If she was out of network, I would be paying a $750 deductible, and 80% would be covered beyond that. I started to get my hopes up – either of those would be awesome! – but also remain skeptical. The customer service rep made calls to my surgeons office, to the surgical center, and to some other places. She determined in the end that it would be out of network.
At that point, I said, “OK, I just want to make sure you’re doing this through the category of gender identity disorder? It is a gender-related surgery.” She responded, with a blankness in her voice, “That’s an exclusion under your policy.” I replied, as my heart sank a little, “OK so nothing will be covered. So it doesn’t matter whether she’s in network or out of network?” “Correct.”
I was mad that she overlooked the category I gave her, as a first piece of information, and moved forward as if there would be coverage, only to let me down. And that once I made it clear, she didn’t have anything more to say to me that might be helpful.
I asked her about the appeals process. She said I would pay for and get the surgery, the office would submit the claim, the claim would be denied, and then I could work toward getting some reimbursement.
I brought her attention to a 7 page document that is called Medical Policy, Subject: Gender Reassignment Surgery. It lists criteria that need to be met in order for a surgery to be deemed “medically appropriate.” I asked her what this was, and what would happen if I gathered enough information to move ahead with this. I told her it was difficult to understand exactly what I was reading. She said she was reading along with me, and that yes, these policies are confusing. She then put me on hold again, and when she came back, she completely derailed that conversation – she steered me back toward the exclusions. She added that not only was the procedure excluded on the basis of gender identity disorder, it was doubly excluded because it falls under “cosmetic surgery.” The conversation was basically over at that point. I stayed on the line to complete a survey about the call, and I gave her good ratings because she was way more helpful (making multiple phone calls on my behalf) than I was expecting.
I keep going back to this medical policy document. I don’t know for sure, but I have this feeling that it’s the loophole for filing a grievance. That if I can prove it’s medically necessary, I have a shot at getting at least partial coverage.
However, the criteria are so extremely binary in nature. Some examples