Revision post op

Just had my first revision surgery post op where I was really hoping to get the catheter out. Sadly they want me to keep it in a week longer to give the urethra more time to heal. I also have a yeast infection. Otherwise I seem to be healing well though I do have to stay on top of separating the wound at the base of my vagina to make sure it doesn’t heal together like last time. They also gave me tips on how to better manage my pain without opiates.

The team at Mozaic Care are all so wonderful. I hate that I had to have a revision because my original surgery healed weird but I am glad I get to see more of them. Right before surgery when I was waiting for my operating room to be ready I told them about my first orgasm and both surgeons were so excited. One even gave me a hug on the spot.

Update after surgery

The surgery appears to have gone well though it was a little more extensive than originally planned. While they were in there they discovered a hole in my urethra which explains why I was dribbling after I peed. They stitched it up so now I have a catheter and a pee bag tied to my leg for the next week.

The pain hasn’t been as bad as the first surgery but it’s enough that I have to stay on top of pain meds. I haven’t been sleeping well because I keep waking up when they wear off. And it’s painful to sleep on my side right now because that puts pressure on the stitches.

I’m pretty out of it because of the meds so as I’m mostly zoning out and watching bad TV. Hopefully soon I’ll start improving.

Revision surgery day!

Today is my revision surgery on my vulva! The surgeon is going to be modifying my clitoris area to make it easier to access my remaining nerve bundle, removing some scar tissue at the opening of my vulva, and removing excess skin that grew around my urethra that causes me to dribble after I pee. I’m simultaneously glad to get these annoyances dealt with and scared that something is going to go wrong with the surgery or recovery to further damage my ability to orgasm. Fingers crossed everything goes and heals smoothly!

Full orgasm!

I did it! 1 year and 7 weeks after bottom surgery I finally had a full orgasm! I’m not sure what the magic formula was this time but I was trying out a new toy my partner got and a new topical cream that includes Viagra.

It definitely feels very different than my old parts did. It comes on slowly and has a more sustained high point and headiness to it. And I forgot just how wonderful all the happy hormones are that come with it.

I’m excited to have more of them and find out what works. And maybe someday I can get there on my own.

Why is gender affirming care so expensive?

I’ve written quite a bit about the costs that I have incurred along my journey of trying to inhabit a trans body. But even as I look forward to the upcoming revision surgery on my vulva, it is a harsh awakening to realize that I am going to have to spend yet another $6,000+ for housing simply because Seattle has no transgender vaginoplasty surgeons and most insurance refuses to pay for out of state surgery costs.

So how much have I paid out of pocket so far for gender affirming care?

  • $5,000+ for electrolysis and laser hair removal on my face and body (not considered “essential” by insurance)
  • $9,500 in travel costs for consults, surgical recovery housing, and post-op appointments
  • $6,000+ for housing for revision surgery recovery

All told, I can account for over $20,000 in costs that insurance refused to cover.

I am one of the lucky ones. I am privileged enough to have a good job with decent health insurance so my co-pays are minor and I can afford to save up for these procedures. And I have a large network of friends who have generously donated over $5,000 towards those costs.

But can we talk about why these costs exist in the first place? Why is it considered ok for transfeminine people to have to pay for face and body hair removal to deal with dysphoria? In a world that demands that we “pass” as women to use public facilities such as restrooms, that is incredibly classist and discriminatory. And why does insurance not have to pay for the costs of getting an out of town surgery when there are no local surgeons available? My insurance now pays for cancer patients to get out of town specialty care but despite my advocacy for the past several years, continues to deny trans people that same right.

Luckily, starting in 2022, insurers in Washington State are now going to be required to pay for all doctor-prescribed gender affirming treatments and will no longer be allowed to label them as “cosmetic”. This is thanks to the tireless work of many many advocates and organizations who fought for years against insurance denials. And I hear through the trans rumor grapevine that Seattle may FINALLY be getting a surgeon soon who can perform vaginoplasties locally. But while that helps people here in Seattle, that doesn’t change the fact that far too many trans people around the US aren’t given equal healthcare access. We need laws in place federally to mandate coverage of gender-affirming care.

So next time you think of asking someone if they have had “the surgery” or make any kinds of assumptions about what trans people should look like, think about how expensive it is to look like I do. How inaccessible it is to the vast majority of trans people in this country to achieve what Laverne Cox, Caitlyn Jenner, and Elliot Page have done. And if you have resources, I encourage you to donate generously to your local trans fundraisers and places like the Jim Collins Foundation to help more trans people get the care we so desperately need.

Mini Orgasms

Finally a year after my bottom surgery I’m starting to have mini orgasms! I had the first one about a week before my surgery anniversary but I wasn’t sure what it was and I just had three more last night.

They feel like small crests of pleasure but nothing compared to what I was used to before surgery where there is a Big Bang and I’m done. I do come away from sex feeling happy and satisfied though instead of the disappointment and frustration of the last 9 months.

I was hoping for a lot more out of my first orgasm but at this point I’ll take anything I can get. Hopefully my revision surgery will make it a little easier to achieve and they continue to grow in amplitude.

Graduated from Pelvic Therapy

Today I “graduated” from pelvic floor physical therapy. Based on the referral of a fellow trans person, I was able to find a great place near my suburb where the provider seemed knowledgeable about trans neovaginas. She was great and helped me learn to differentiate between just activating the “quick” muscles and activating the deeper, longer holding muscles. For the past couple months I’ve been doing a lot of work to learn to activate them along with my core muscles more instinctively.

It was definitely weird at first because it involved “internal cueing” where she would hold a finger inside me to tell me if I was doing it right. There were also these fun adhesive sensors that go near your asshole that can tell you how strong you’re contracting. A very interesting experience overall but a useful one.

The original reason I went in was because I was having urinary leakage after peeing and I think we’ve determined that it was a physical problem. There is a little pocket by my urethra that tends to hold in a little urine after peeing and I basically needed to learn to wipe effectively since my labia are pretty large.

Anyway, that’s all probably TMI but hey, that’s what this blog is about!

9 Month Post-Op

This week marks 9 months from my bottom surgery and I just had a post-op check in with the surgeons office. Overall healing has gone well other than the very notable exception of my clit falling off. Dilation is easy now and I can go down to every other day if I want. I’ve gone though all the sizes they gave me and even ordered one bigger. I managed to get all the granulation tissue (bleeding spots) to heal up and there hasn’t been any discharge for several months.

I do still have some urinary leakage after peeing which is annoying so I’ve started going to a pelvic floor physical therapist and I’m doing kegel exercises at home. Having a physician put their finger in your vagina every week certainly takes some getting used to! I’m hoping it also helps with sex because I can get up to the edge of orgasm but I still can’t crest that peak which is eternally frustrating. The doctor says that’s still within the realm of normal but I’m at the average time that it usually takes so I’m getting more anxious about ever being able to fully enjoy sex.

Now that me and my partners are fully vaccinated I get to start dating again. I’ve been seeing someone new I met online during the pandemic and after 8 long months we finally get to touch each other this weekend. I’m definitely nervous about having sex with someone new when I haven’t even figured out my own new body parts yet but they’re trans too so I’m sure they’ll understand. I’m just glad that the waiting is over.

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.