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
I’m much more of a writer than a conversationalist – and definitely not a public speaker. Tons of people have a fear of public speaking. I don’t mind being in front of audiences, so at least I have that first hurdle out of the way. I just have a fear that I won’t be able to talk naturally and coherently. Despite this, I’ve had aspirations for a long time to verbally share my experiences, be on panels, join the speakers’ bureau, etc. I’ve talked a few times in front of audiences, mostly as part of drag performances. I’ve gotten around the talking thing by preparing statements ahead of time, reading out loud what I’ve written.
I’ve never seen someone on a panel read before, but I figured, I could do it! Why not? I had seen a message posted to a facebook group, from an acquaintance who works for Planned Parenthood. She was organizing a half-day of training about trans-healthcare for the PP health center staff: clinicians, nurses, health center managers and front desk staff. It was going to include a 45 minute panel, and she was looking for trans-people to talk about their experiences with health services – both positive and negative.
I thought my recent consultations with surgeons for top surgery would illustrate a stark contrast, so I emailed her about it and included links to these two posts:
She wrote back saying it’d be great to have me, and I could certainly read out loud. Over the weekend, I edited these so they’d work better spoken out loud, and I tried to cut them down shorter. Because, dang, they seemed short when I wrote them, but it takes more time than you’d think to read things out loud!
I arrived at the venue Monday morning, and I wasn’t even that nervous! I recognized one of the other people on the panel, which was cool. The third person came in shortly after, and we introduced ourselves – her name is Leah.
I went first to get it out of the way; I introduced myself and then just launched into it. I think, in retrospect, that I was talking too loudly (definitely not quite my natural speaking voice) but, that’s OK – better too loud than too quiet I guess. The other two people went, and they both did an awesome job speaking off the cuff. We answered a bunch of questions, and I was grateful that the person on the other side of me naturally answered first, giving me time to formulate something to say. It all went really well – people had great questions! (As an interesting aside, there were about 75 people in the audience, and it appeared to be made up of 1 man / 74 women.)
The organizer then presented us with gift bags and gift cards, which was awesome! I feel like the norm is that panel participants are just volunteering, so that was awesome that we were compensated. We lingered while the group wrapped up their training, ate some bagels and had some coffee, and then stuck around in case anyone had any further questions. No one did, but we got lots of compliments and thanks, as people were leaving.
This was totally worthwhile and something I’d like to do more of. I’m not sure how I will transition from reading things into actually becoming a speaker, but, well, it’s something to work on.
The next day, one of the bloggers that I’ve been following for a while, The Overflowing Closet, wrote this post (as part of the 30 day trans-challenge she’s doing: Day 8 – “How do you deal with being misgendered in the beginning of transitioning by people?” She started by saying, “Yesterday I gave a talk in front of 75 medical staff and personnel about my experiences being transgender and seeking medical help. The crowd was filled with people who wanted to provide better services for trans people, and one of their biggest concerns was misgendering people.”
I suddenly realized that the Leah I had met the day before is the same Leah whose blog I’ve been reading! Has this ever happened to you? Where you’re reading a blog and then you meet someone and then you connect the dots in between? Such a cool experience! I contacted her to see if I could share this, and she said of course.
So hey, here’s to making something out of all this writing and online connecting with people!
I drew this picture to illustrate the jumble I feel is going on. Just to recap, 6 months ago, had a manic episode and was hospitalized. I previously was not on any medications, but suddenly I was thrown back into all of that – psychiatric visits, side effects, adjusting dosages, trying different drugs. I’d definitely say the hardest part of the past 6 months was being depressed for a good chunk of that time. But almost equally hard, just in a different way, is the long term.
Early on, I was cavalier. I was sure that I’d get off of all these medications within 6 months – just go back to the way things had been. I was even reluctant to add an antidepressant – things had to get really bad for me to go there. Now that it’s been 6 months, I can easily say that time frame was way too short. And I’m also not so sure anymore: Which drugs are helping? Which side effects can I tolerate? How long will I be seeing this psychiatrist? Do I potentially want to stay on any of these long term? (That last question scares me – it’s almost as if being med-free has been a part of my identity…)
Some of this journey has felt crazy. I was having hot flashes and cold sweats, my mouth tasted metallic, I threw up a few times (and I have a stomach of steel). At one point, I went on a drug called Cogentin. Its purpose was not to help with symptoms, but rather to help with side effects. One of the other drugs, Geodon, typically causes hand tremors and a stiffening of facial muscles. When a nurse practitioner asked if I was experiencing these things, I said, “I guess so.” So she prescribed yet another thing to add to the mix. After 3 days of taking it, my nearsighted vision became blurry. Overnight. One day was fine, the next day, I couldn’t read the computer screen. I wasn’t reading books at the time, so that wasn’t an issue, but I remember eating food and not being able to see it and just feeling enormous sadness on top of depression. I didn’t put the pieces together, but luckily I had an appointment with my psychiatrist 2 days later, and when I mentioned the blurry vision, he said, “Oh, that’s common with Cogentin.” What?
I also cycled through 4 different antidepressants within a short amount of time. Celexa, Zoloft, and Lexapro were making me feel famished all the time, which was just making me feel anxious. I got on Wellbutrin, and luckily that’s been side effect – free as far as I can tell.
Ideally, I don’t want to be medicated. And it was so easy when it felt like that wasn’t on my radar. But now I am faced with all these decisions and timelines. And although there is strong input from other people (mostly my psychiatrist, who thinks I need to be on at least something for forever), it’s all ultimately up to me.
For now, I just advocated for myself to lower the amount of Geodon (mood stabilizer / antipsychotic) that I’m taking. I feel really happy about that. I have plans to tackle Klonopin (anti-anxiety medication that I’m using as a sleep aid) next. As for Wellbutrin (antidepressant), I’m not quite decided. I’m just going to take these things one step at a time.
I’m on a 2 week leave from work again right now. I was basically planning to just push through depression and just go through with obligations and routines. That’s what I tend to do. But I was switching medications, and I really hit a wall. I had been on Geodon, and was switching to Latuda (both atypical antipsychotics). The Geodon was causing some strange hormonal side effects, so for 2 weeks, I was on a half dose of that and a half dose of this new one. That was working out OK. Switching to a full dose of the Latuda really set things off though. I couldn’t sleep and was starting to feel agitated. Depression plummeted and anxiety skyrocketed. Last night, I threw up an hour after taking the pills.
I had a therapy appointment yesterday, and going out of work again was her idea. As soon as she said it, it sounded like a good idea. Why didn’t I think of that? Haha. I have plenty of sick time; might as well use it when I actually need it.
I really do not know what I’ll do for two weeks. (OK, I do have some ideas – I can get my car recalls taken care of, I can start thank you cards from our party last summer, I can give my friend a hair cut, I can try doing some writing, I can just take it easy.) I feel relief.
I just feel trapped in by medications right now (side effects are weird! I’m a small person and I feel the dosing has just been way too high!), and by my psychiatrist because it’s all his call. I thought the Geodon could be OK if I were on less of it. He decided we’re not going to lower it, we’re going to switch drugs instead. Now I have to call him and tell him that’s not working out. I really just want to be on Geodon, just less of it. I really hope he listens.
A couple of days ago, I hit my big 1.75 year milestone! (Haha.) I’ve been doing quarterly updates about changes on testosterone, and I’ll probably just continue at that pace.
Changes: There are none to report. Nothing new at least. I had increased my dose from 1 pump of 1% (Androgel) to 2 pumps of 1%, from roughly August through November. I did this because my blood work had come back with low levels. Er, by “low levels,” I mean back into a normal female range (I believe I was at 64 ng/dl). So after increasing and having more bloodwork done, I saw my doctor in November, and she told me my levels were at 210 ng/dl. I was surprised by this – not because it’s bad; just because it did not feel like I was up in that range at all. (A female range is roughly 14-75; a male range is between 300 and 800). I had been aiming for roughly 100 ng/dl; to find out I’d more than tripled my level felt hard to believe.
I hadn’t been experiencing a drop in my voice. Or more hair on my body. Or an increase in sex drive or appetite. To clarify, I have experienced some changes over time – just nothing new in a long time. Here are some past posts about it, if you’re interested:
My doctor wanted me to decrease the dosage a little bit. I strongly feel that I am going to do what I want to do and not what my doctor wants, in this regard. BUT, I’m super curious to see what the lab work will come back as, with a slight decrease. Because so far, the amount I’m taking has not appeared to correspond directly with the amount in my blood stream. Not in a sensical way, at least. So, for now, I’m using 1 pump of 1.62%, daily.
Like I said, there’s nothing new to report. So I’m going to just riff off of one thing I’ve really been enjoying. Feeling warm!!! It’s not so great in the summer, but right now I’m reveling in it big time. I’m typing right now wearing jeans and a t-shirt. This would not have been possible in winter months before taking testosterone! (Because we keep our house pretty chilly, to try to save $$$.) I can step out of the shower and not feel like I am shaking and shriveling until the point I have all my long johns and sweatshirts on. I can just kind of step out of the shower and take my time getting dressed. I can walk around with damp hair, and it’s not intolerable. My partner reports that sometimes it is too hot when we’re sleeping and I’m spooning her, in the dead of winter, even up in our uninsulated attic (which is where we sleep). Never heard that complaint before taking testosterone.
I love feeling warm when it is cold!!!
And finally, a couple of pictures of my face, to illustrate that it is possible to take testosterone for this long and still look pretty much the same (if that’s what you’re trying to going for – I am…)