BMI Cutoffs are unscientific and harmful

As I’ve written about before, BMI (Body Mass Index) is an unscientific concept that is often used to deny trans people life-saving surgeries. It is treated by far too many surgeons as medical fact, despite the vast body of evidence that it is wildly inaccurate, scientifically useless, and never intended by the creator to be used on an individual basis.

Recently, the only surgeon in Washington State, Geoffrey Stiller, formerly one of the few surgeons who would accept fat patients, updated his policies quietly to exclude people over the arbitrary and oft-used cutoff of 35 BMI. That means that at least two people close to me are now being denied gender affirming surgery without so much as a notification about the change. So I wanted to take the opportunity to share some scientific research recently published on the topic.

  1. Recent research shows that there is no correlation between BMI and surgical complication rates in trans people in either vaginoplasty (bottom surgery) or mastectomy (top surgery)
  2. “Obesity” (aka normal body variation) is very common in trans people seeking surgery (26% at Mount Sinai) and did not change despite efforts to lose weight prior to surgery
  3. BMI is not an empirically based method of denying gender-affirming surgery

Trans people should not have to bear the burden of educating providers about our care but all too often we are put in that position anyway. So next time a surgeon tells you they won’t perform surgery because of “policies”, please feel free to use this research to push back on them. Even if you don’t win a single conversation, hopefully you will plant a seed and prompt them to actually read the scientific literature on the topic. I found these articles with only a cursory review of the topic and I’m not even a doctor.

Citations

  1. Ives GC, Fein LA, Finch L, Sluiter EC, Lane M, Kuzon WM, Salgado CJ. Evaluation of BMI as a Risk Factor for Complications following Gender-affirming Penile Inversion Vaginoplasty. Plast Reconstr Surg Glob Open. 2019 Mar 13;7(3):e2097. doi: 10.1097/GOX.0000000000002097. PMID: 31044103; PMCID: PMC6467628.
  2. Rothenberg KA, Gologorsky RC, Hojilla JC, Yokoo KM. Obesity is Not Associated with Complications or Revisions after Gender-Affirming Mastectomy in Transgender Patients. Plastic and Maxillofacial Surgery. 2019 Oct 1;229(4):sup1. doi: https://doi.org/10.1016/j.jamcollsurg.2019.08.494
  3. Martinson TG, Ramachandran S, Lindner R, Reisman T, Safer JD. HIGH BODY MASS INDEX IS A SIGNIFICANT BARRIER TO GENDER-CONFIRMATION SURGERY FOR TRANSGENDER AND GENDER-NONBINARY INDIVIDUALS. Endocr Pract. 2020 Jan;26(1):6-15. doi: 10.4158/EP-2019-0345. Epub 2019 Aug 28. PMID: 31461357.
  4. Lisa M. Brownstone, Jaclyn DeRieux, Devin A. Kelly, Lanie J. Sumlin, and Jennifer L. Gaudiani. Transgender Health. ahead of printhttp://doi.org/10.1089/trgh.2020.0068

My greatest fear

I know this sounds dramatic but all this waiting in dread and frustration to find out if my greatest fear is being realized is terrifying. Before making the decision to have bottom surgery, I had to overcome a pretty significant fear that I could be in the rare group of people that can’t orgasm (anorgasmia) after surgery. I decided to go ahead anyway because my dysphoria was getting worse but that fear has still been in the back of my head the whole time. And now, here I am, 7 months after surgery and still unable to orgasm. I know it’s early and that the average healing time is 1 year but it is still absolutely scaring the shit out of me.

It honestly wouldn’t be so bad if I still had the libido that I did before surgery due to dysphoria. But now that I have the right body parts and my sex drive has returned, this waiting is absolute agony. And I don’t have the other outlets through kink that I would normally have since I’m limited to contact with one partner. I’ve tried pretty much everything I can think of including ordering way too many different vibrators but still no luck.

Honestly, right now, I kinda regret having surgery. I don’t say that so that cis people can justify denying trans people life saving treatments but rather to normalize being honest about that when you’ve had a disappointing experience. I hope that this feeling will pass but right now I would take the dysphoria over the frustration personally. And I honestly don’t know how I’m going to get through life if this keeps up.

Sorry to be depressing today. Thanks for listening to me vent.

Quirky Vagina

Good news! I went to see the urologist today about what I was worried could be a urethralvaginal fistula and she was able to determine that there’s nothing wrong, I just have a harmless little cul-de-sac that splits horizontally from my vagina towards my clitoral area. Turns out my vagina is quirky in more than one way. I’m so relieved!

The only thing she recommended was that I go see pelvic floor physical therapist to help improve some of the minor incontinence issues I’ve been having. That should certainly be interesting!

Yet another post-surgical complication

Content warning: medical shit below

I’m so tired of having to worry about my new vagina and whether something is wrong. I really wish I had just been born with the right hardware in the first place so I didn’t have to think about it all the time and I had something I could rely on to work properly.

Yesterday I went to the doctor because I was worried that I had a vaginal tear. And while it turns out it probably isn’t a tear per se, it could potentially be a fistula to my bladder. I have to go to a urogynecology specialist to confirm. It’s also possible that it is just a harmless little pocket in my vagina that just healed weird but either way, it is likely something that will need yet another surgery to fix.

I also keep having bleeding from this granulation tissue right next to my vaginal opening that I am going to have to treat with silver nitrate for a few weeks until it clears up. But unfortunately, the treatment makes it bleed more, a lot more, in the short term while it heals. It is really scary to go to the bathroom and see blood literally dripping from your vulva after you pee. Luckily I have a whole set of homemade flannel pads that my partner made for me so I don’t have to use up a million disposables during this process.

I still haven’t been able to orgasm yet, though worrying about hurting your parts and whether you’re going to start bleeding isn’t exactly conducive to relaxing into it either. And the combined effect of all of this is incredibly frustrating. I just want things to work right! Is that too much to ask for?

Anyway, thanks for listening to me vent.

5 Month Post-Surgery Update

It’s hard to believe it’s already been 5 months since bottom surgery. Though then again, it is very easy to believe it has been over 5 months since I’ve orgasmed because I can definitely feel that frustration.

I had my “6 month checkup” a little early yesterday. The doctor is impressed at where I’m at and reassures me that it is totally normal to not have orgasms until 9 months (which feels like forever!). I’m now at the biggest size dilator they gave me after surgery and I’m planning on buying an even bigger one soon to open up more options for toys and partners.

The one concern is that I’m still having some bleeding sometimes when I turn up my toys too high near my clit area. She had me send her a photo and confirmed that it is from some leftover granulation tissue that is persisting. I talked to my PCP about it and she is prescribing me some silver nitrate to apply to the area to heal it over. I also have a steroid cream to apply to aid healing. It’s a relief to know it’s not because of trauma I’ve done to the area but just tissue that bleeds easily and is treatable.

Other than that, I just need to keep practicing and hope that the orgasms come soon. I have 2 more checkups at 9 months and again at 1 year (hopefully in person). By that point I should be fully healed and just need to keep up on dilation once to twice a week.

3 Month “Graduation”

I had my final post op appointment in person today and got some confirmation and a little reassurance.

I was correct. The tip of my clitoris did in fact fall off. My freak out was totally warranted and it wasn’t normal.

The good-ish news is that my nerve bundle is still intact just under the skin and I should still be able to orgasm, though it may take another 6 months to regain enough feeling for that to happen. The lack of sensation at this point is completely normal. Eventually I’ll just have an erogenous zone there where a clit usually is, it will just be harder for people to find.

I am definitely disappointed. I feel simultaneously like I haven’t fully processed it and that I kinda did process it several weeks ago when it happened. But as long as I can eventually orgasm, this surgery will still have been worth it. The reduction in dysphoria and the euphoria I get from being able to pee properly are a significant improvement. I just wish I didn’t have to be the one with the weird complication.

Otherwise I’m healing well. They treated the granulation tissue spots with silver nitrate and sent me home with a cream that will clear them up so they stop bleeding. I’m making good progress with the dilators and hopefully it should be smooth sailing from here other than waiting to have orgasms. Crossing my fingers that those eventually work right.

Week 12 Update

I’ve reached the end of my intensive healing period! The 12 weeks of no baths, hot tubs, or lifting is over and I can now go down to only dilating once a day. That also means I’m back at work full time now.

Unfortunately the healing is by no means over. I tried having sex and I could barely feel my partner’s fingers at all. The nerves haven’t woken up yet so I have no sensation and it is going to be a lot longer before I can find out how/if orgasms work now.

I have my final post-op appointment in San Francisco tomorrow where I’ll ask about the nerve healing and find out if that is normal. I also still need help figuring out if my clit is just hidden or if something happened to it during healing. The doctor can seal off my granulation tissue at that appointment to keep them from bleeding frequently which will be great.

I’m very nervous about flying during COVID but hopefully the plane will stick with their 2/3 full protocols. I’ve also read some heartening reports about how masks are really working and cutting down on transmission even when there are confirmed cases on board.

I’m glad I can start returning to normal life a bit more but I’m frustrated sexually and hoping that the nerves wake up soon. My biggest fear about getting this surgery has always been that I would be in the tiny fraction of people who have complications that prevent orgasm. My doctor has tried reassuring me but she really can’t do much until she sees me which makes this flight worth the risk. Fingers crossed that I get some answers that calm my anxiety.

Week 11 Update

I’m in the final week of the 3 month healing period and it seems to be smooth sailing right now. The tightening seems to have ended and I may try going up to a new dilator size today. There hasn’t been any bleeding from the granulation tissue for a few weeks now but I’ll get those chemically burnt off (painlessly) next week at my final post-op appointment.

My only concern is that I still can’t feel any kind of definition on my clit which has me worried that either something happened to it during healing when that tissue fell away or that she just didn’t build a very useful one. Not much I can do about it now other than fret because that’s who I am.

Next week I can finally take baths, go in the hot tub, lift things, and have sex again. It has been hard to remember the last couple weeks not to lift things because I’m feeling better now. I also get to go down to dilating once a day instead of three times and return to full time work. I feel like I’m ready for work now but I still have to spend so much time dilating and I’ve been enjoying sleeping in.

The part I’m really not looking forward to is being on a plane during a pandemic… Wish me luck in not catching anything!

9 Week Update

This week has been pretty uneventful. The only thing going on with healing is that things have tightened up and lost their elasticity temporarily. Luckily I was warned that this would happen and make dilation more difficult and so far it isn’t as bad as they made it sound. Once this is over, I think I’m ready to move up to the next size dilator.

Other than that, healing is going well and it’s starting to feel more like a normal part of my body instead of something new and unfamiliar. 3 more weeks until I can start exploring it more!

How much does surgery cost?

It is going to depend a lot on your insurance plan and where you decide to get surgery but let me share a bit about what my expenses were.

  • 2 Pre-Surgical Consults in San Francisco with flights for 2 people and 5 nights in a hotel – $1,000
  • Comfortable ground floor lodging for 1 month in San Francisco for the pre-op appointment and 3 weeks of recovery on AirBnb – $3,300
  • Lodging and gas to drive to San Francisco from Seattle and back – $400
  • Takeout food during recovery (we splurged a bit on comfort food) – $1,200
  • Medical supplies and copays – $200
  • Flight back to San Francisco for a 3 month recheck – $200

Total = $6,500

I am very lucky that I didn’t have any large deductibles and copays since I met my out of pocket max both years. This was obviously a much more comfortable recovery than most people can afford and I am extremely grateful to my friends who donated almost $4,000 to help make this happen. I also didn’t have to bear all the expenses myself since my spouse paid for a lot of the food.