Gender-affirming vaginoplasty is a complex surgery and should be considered a journey rather than simply an operative procedure. There is a tremendous amount of information that patients must be aware of. However, there is limited literature on navigating the most important topics and the best way to educate patients on them. We aimed to address this problem with the goal of creating evidence-based resources that will improve patient satisfaction and vaginoplasty outcomes.

In reference to topics of most importance during pre-surgery, it is not surprising that possible complications were a highly rated topic (93% very or extremely important). As surgeons, we believe it is crucial that the patient understands the risks and complications to give informed consent for surgery. This finding is consistent with the research by Poceta et al. that revealed discussion of possible complications was one of the topics of interest for patients during consultation [4]. The study by Poceta et al. also found that TGNC patients wanted to see more pre- and post-op images of previous patients and the expected wound healing, as well as information on medical supplies needed for recovery [4]. Our study found that 79% of patients ranked pictures of the expected final appearance as very or extremely important, with fewer patients placing the same importance on pictures of the immediate post-operative appearance (60%) and the early post-operative healing (64%). At least 85% of patients felt that these sets of pictures should be provided by the surgeon.

The topic of FP (e.g., sperm banking) garnered mixed ratings of importance. Given the permanent infertility resulting from orchiectomy, one might expect patients to be highly interested in this topic. However, our clinical experience is congruent with a low level of interest in FP; in the last 12 months, only one patient in our practice pursued sperm banking. Patients may have rated this topic as less important in a pre-op vaginoplasty consult because they believe that FP should have been pursued earlier; 54% of patients felt that their PCP was the most appropriate source for this information. A review revealed that many transgender patients in America, Australia, Canada, and Germany had a desire for children but only a small percentage underwent FP [6]. Although WPATH recommends FP counseling for transgender patients, many do not receive it at any point in their journey of transitioning. Furthermore, even when patients are given options for FP, they often need to seek these procedures on their own [7,8,9,10].

The financial circumstances found in our study population are comparable to other research populations. Current literature indicates that the most common barrier to receiving gender-affirming care was financial concerns, with almost half of their population reporting <$10,000 annual income [10, 11].

In comparison to the annual household income and occupation status of our participants, the impact on finances seems clear. Despite 65% of participants reporting an annual income of below $20,000, 41% reported out-of-pocket costs of $5000–15,000. There is a need for more information on expected financial impact, with 73% of participants stating this is a very or extremely important topic and 43% reporting receiving no information on this topic. One patient suggested providing resources for “Information on financial support (Charities, loans, etc.)”. This type of information-seeking supports the need for a multidisciplinary team as surgeons are likely ill-equipped to provide this information. We recommend enquiring about savings for out-of-pocket costs early in the pre-operative consult and ideally, providing an approximate out-of-pocket cost or vaginoplasty budget.

Our findings were consistent with previous research in the plastic surgery field, which showed breast reconstruction patients wanted to know about hospital and home care interventions, prevention of post-surgical problems, and information of possible effects on the body in the post-operative period [12,13,14]. In our study, topics with the highest rated importance included post-operative restrictions and wound care information as well as detailed instructions on performing dilations, and when to seek follow-up. This was echoed in the thematic analysis with two of the themes being recovery process and neovaginal dilation and depth. Participants provided suggestions about optimizing recovery, including a focus on the effects on mental health (Table 4). In the development of resources for post-operative vaginoplasty care, teams should include detailed information on these topics to help the patients be more comfortable in their care post-surgery.

One topic that medical professionals often focus on is prostate cancer screening. However, 42% of respondents stated that preventative cancer screening information was not important to moderately important. This reflects the difference in priorities between healthcare practitioners and patients.

Our results highlight the importance of providing instructions about dilation and pelvic floor muscle health to vaginoplasty patients. In both the pre-operative and post-operative sections, all topics regarding dilation and the pelvic floor were rated very to extremely important by most participants. Despite this, over a fifth of patients reported that they did not receive information on pelvic floor physiotherapy pre-operatively. Participants highlighted the desire to see a pelvic floor physiotherapist and suggested a video series as well. We believe that any program performing vaginoplasties should include or work closely with pelvic floor physiotherapists dedicated to the TGNC population. Furthermore, we see an opportunity to develop additional resources (e.g., a video series, booklet, or app) with detailed instructions and visual aids regarding dilation and pelvic floor muscle relaxation. This may be especially important for patients who live far from their surgical center.

A considerable number of patients (>30%) reported not receiving any information on certain topics. These included out-of-pocket costs (discussed above), as well as expected changes in mental health, expected depth of the neovagina, long-term follow-up details, pictures of the final appearance, and FP options. In our practice, some of these topics are covered in a verbal discussion only. Given the abundance of information presented to patients, it’s possible that they either do not remember all the topics being covered or they are not covered adequately [15]. When considering patient education resources, these topics should be considered for inclusion.

When participants were asked to state any topics not mentioned that are important to cover, responses included loss of depth, what to expect when having an orgasm, effects on prostate, and more detail regarding pelvic floor exercises.

Another critical aspect of our study was enquiring about the best methods and sources to disseminate information to patients. In the pre-operative section, over 50% of patients preferred receiving information in a written format for nearly every topic enquired about. This speaks to the information overload that patients tend to experience at the physician’s office [16]. However, we cannot expect written resources to replace personal interactions with the medical team. In our qualitative analysis, patients reported that most topics would be best covered by both a verbal discussion and a written handout.

For most topics, patients also specified that they wanted to receive the information from the surgeon’s team directly, with a few exceptions for topics better covered by their primary care provider or mental healthcare provider. Although we are aware that many patients have friends who have already undergone vaginoplasty, almost no participant chose “friends” as a preferred source of information. Similarly, even though the internet is full of material related to vaginoplasty, participants did not choose this as a preferred information source. Trust in healthcare providers was one of the identified themes from our qualitative analysis. Patients develop a personal connection with their surgical team and place value on being able to trust the medical professionals caring for them. This calls on us to ensure we are directly providing accurate, complete, and easy-to-understand information.

We found that most participants would prefer a comprehensive booklet of the vaginoplasty process, rather than individual handouts. We hypothesize that this is because patients want to be able to plan ahead. Providing post-discharge instructions at the initial visit may help patients to better understand what is involved in the recovery phase. It may be helpful to include a checklist that outlines items to purchase (e.g., lube, pads, douching supplies) and things to prepare (e.g., place to stay, support people, pre-prepared meals) for a successful recovery.

One of the most emphasized topics was the importance of the cultural competence of providers (i.e., avoiding misgendering). All participants ranked this topic as very to extremely important. In the thematic analysis, trust in healthcare providers was identified as a major theme. One participant reported that they were misgendered by the medical staff throughout their inpatient stay. Unfortunately, this is a recurring phenomenon for the TGNC community and consistent with existing research showing mistreatment in healthcare settings, uninformed medical providers, and feeling shamed by providers [8]. Another participant stated to not “trust the doctors or nurses to take care of you. Fight for yourself. If you’re in pain, do what u need to do to get pain meds.” This raises concern and emphasizes the importance of an adept medical team that will treat the patients with respect and compassion. Institutions providing gender-affirming surgery should ensure that all staff—from the nurses to the porters to the hospital chaplain—are provided with training on caring for this population.

One limitation of our study is the small sample size and response rate; we had 17 participants in our study. Having a larger sample size would have been helpful in gauging the needs of the TGNC community and would give us a better understanding of how to best accommodate them. In addition, as this was an exploratory study, we did not run statistical analyses as with so many topics and relatively few participants, results would be clouded by multiple testing problems.