A survey of reproductive anatomy and gender affirming hysterectomy knowledge among transgender men who started testosterone at or before 18 years old

Abstract

Background

For many transgender young adults considering gender affirming hysterectomy, discussions may begin prior to the age of 18. However, the extent of their relevant understanding is unclear.

Objectives

Determining whether transgender men who started testosterone during adolescence correctly understand their reproductive anatomy and the nature and implications of hysterectomy with or without oophorectomy as well as the extent of their recalled counseling and related beliefs.

Design

Cross-sectional survey.

Methods

An anonymous REDCap survey, sent both through community message boards and the Prolific survey platform, assessing knowledge of and experiences with reproductive and sexual health care in the context of gender affirming care. Analyses were descriptive.

Results

Of 125 respondents, most had initiated testosterone between age 17 and 18 (n=85,67%). Roughly two-thirds (n=80, 64%) wanted or had had a hysterectomy, but only 48% (n=60) wanted or had had an oophorectomy. The majority correctly identified the purpose of the uterus (n=116, 93%) and ovaries (n=88, 70%) ovaries, as well as their physical relationship to each other (n=103, 82%). Fewer correctly defined a hysterectomy (n=78, 64%). Only a third of our respondents reported ever being counseled about the uterus (n=42, 35%) and the ovaries (n=43, 36%). Roughly one-third recalled counseling about testosterone’s effects on the uterus and ovaries, primarily by their testosterone prescriber. Most people were uncertain of their knowledge of surgical requirements, but those who felt confident enough to state beliefs tended to be correct.

Conclusion

Most respondents who started testosterone prior to 18 had basic knowledge of the function and location of the uterus and ovaries, with less knowledge about gender-affirming surgeries. There is a need for clear guidelines to inform clinical counseling in adolescence, as transgender patients may start thinking about hysterectomy for gender affirmation during adolescence, even if the procedure is not accessible until they reach majority.

Plain language summary

For many transgender young adults considering removal of their uterus for gender affirmation (hysterectomy), discussions may begin prior to the age of 18. However, the extent of their relevant understanding of these discussions is unclear. This was a survey of transgender men who had started therapy prior to 18 about their knowledge and beliefs regarding their reproductive anatomy and the nature and implications of hysterectomy with or without oophorectomy (removal of ovaries). The majority correctly identified the purpose of the uterus and ovaries, but fewer correctly defined a hysterectomy. Only a third of our respondents stated they had ever been counseled on what the uterus and ovaries were. There is a need for clear guidelines to inform clinical counseling in adolescence as transgender patients may start thinking about hysterectomy for gender affirmation during adolescence even if the procedure is not accessible until they reach majority.

Keywords

adolescence counseling gender affirming care hysterectomy oophorectomy testosterone transgender

Introduction

Nearly three-quarters of transgender men (including all transgender people sex assigned female at birth who may have genders including male, non-binary, genderfluid, etc.) will choose to undergo a hysterectomy for the purposes of gender affirmation.¹ Those who wish to have a hysterectomy for gender affirmation may also desire it for other reasons, such as wanting a different surgery for which it is a prerequisite (e.g., phalloplasty).² They may also be interested in the procedure to address various medical indications, such as chronic pelvic pain.^3,4

Gender affirming hysterectomies differ contextually from other hysterectomies for several reasons. The majority of individuals who seek gender affirming hysterectomies do so after initiating testosterone for the purposes of gender affirmation.⁵ Furthermore, they are often performed at much younger ages than hysterectomies for other indications.⁶ In particular, gender affirming hysterectomies are increasingly being performed in young adults, 18-25 years of age.^5,7,8 This raises the possibility that the majority of discussions about decision-making for these procedures may occur prior to the age of 18, when patients are still minors. This includes counseling not only on the decision of whether to undergo a hysterectomy but also on the details of the procedure, including whether patients will have a concomitant oophorectomy.

While a hysterectomy is defined as the removal of the uterus and cervix, in transgender health lay and even medical literature, oophorectomy has often been assumed to be included by default.⁹ However, despite both historical and current practice, gender affirming hysterectomies are benign procedures that do not require oophorectomy.² While some research suggests that the proportion of gender affirming hysterectomies that include oophorectomy may be decreasing, it is unclear why the prevalence remains so high.⁸ The frequency of oophorectomy could potentially reflect either or both of patient preferences and physician counseling. Past studies have suggested that some clinicians believe that patients on testosterone should remove their uterus and ovaries.⁹

Hysterectomy and oophorectomy are both permanent, irreversible, and fertility-altering procedures, and their implications should be discussed in detail. This is particularly true when they are performed early in adulthood, as these procedures may affect an individual’s life for many years.¹⁰ For those who choose a bilateral oophorectomy, possible areas of impact include their family building goals, sexual health, and sex-steroid-based health.^2,11

To date, it remains unclear how well counseled patients are prior to their decision to undergo a gender affirming hysterectomy. Not only are hysterectomies for gender performed less widely than those for other indications (e.g., fibroids, endometriosis), but given their context as part of a broader range of gender affirming care, some counseling may come from clinicians who themselves are not performing the procedures. Patients may, for example, receive counseling about hysterectomy options from their hormone therapy prescriber or primary care clinician. This includes the possibility of counseling by pediatric providers for patients seeking surgery at or shortly after turning the age of majority. Pediatric providers are likely to be less experienced in counseling about sterilizing procedures as many states limit access to such procedures to those over the age of majority.²

In a previous study, we examined how clinicians counseled their adolescent patients who were seeking gender affirming hysterectomy and found heterogeneous approaches.⁹ This study seeks to address the other side of the counseling experience by evaluating how transgender patients who start care during adolescence recall both any counseling experiences and the information that might be expected to be conveyed during that counseling. Specifically, we sought to understand patients’ understanding of their reproductive anatomy and their recall of related surgical counseling to determine whether there are any concerning knowledge deficits.

The goal of this study was to perform an exploratory study to understand the degree to which transgender men (including all transgender people born with a uterus and ovaries who may have genders including male, non-binary, genderfluid, etc) who started testosterone at or before the age of 18 understood the functions of the uterus and ovaries. Secondary aims included comparing recalled counseling on hysterectomy and associated reproductive and surgical gender-affirming care between those who did and did not have knowledge about the uterus, ovaries, and hysterectomy, as well as describing their beliefs regarding hysterectomy and associated genital surgeries.

Methods

Recruitment

This was an online cross-sectional survey. Information regarding the study was provided in text form prior to participation, and participants were instructed that informed consent was provided by choosing to proceed with the survey, constituting written consent. We powered our study to detect a difference between those who answered the majority of factual questions correct (75% or more correct) compared to those who do not (50% or fewer correct), which required enrolling 292 respondents (for 146 in each group). Individuals were recruited for participation through two methods to increase the potential numbers of participants. The first group were recruited through advertisements on community message boards from April to August of 2022. An additional group was recruited through the Prolific survey platform, (Prolific.com) from December 2022 to November 2023. In order to be included in this study transgender men needed to be 18 years or older at the time of study completion, have taken gender-affirming testosterone, had initiated gender-affirming testosterone prior to the age of 18, were born with a uterus and ovaries, and currently living in the United States. We chose 18 years old as the inferior bound as this is when individuals in the United States can generally consent to hysterectomy and oophorectomy and we wanted to understand how knowledge garnered before this was retained/understood by those who were now at an age where they could use that information to inform surgical clinical decision making. Individuals’ data were excluded from analysis if they did not meet the screening criteria either during screening or in their formal survey answers.

Due to the setup of this survey platform this method of recruitment used a two-stage procedure where transgender men who were over 18 and under 35 and living in the United States were invited to a screening survey where they were asked if they were born with a uterus and ovaries and had started testosterone prior to the age of 19, If so, they were invited to participate in a screening survey to determine their eligibility. Then, if eligible, they were invited to participate in the full study. Prolific required a superior age limit so we chose 35 years old as individuals over this were very unlikely to have had access to gender affirming hormone therapy prior to the age of 18 given care models from 20 years ago.

Of the 325 individuals who completed the screening survey on Prolific, 82 were eligible for the full survey, and 73 completed it, for a response rate of 89% (N=73). There is no response rate calculated for the community invited survey, as it is not possible to determine how many individuals saw the advertisements. However, of 110 individuals who started the screening portion of the survey (age, ever testosterone use, testosterone initiated prior to age 19, United States resident, born with uterus and ovaries), 67 were eligible to take the full survey, and 52 (78%) completed the survey. There was no age cap on eligibility for the community survey wave.

All participants recruited through the Prolific platform were compensated $0.15 for the screening survey and $10 for completing the full survey. Payment was anonymously provided via the app. Individuals who completed the community survey were invited to provide their email to receive a $10 gift card.

Survey

The survey was conducted using the Research Electronic Data Capture (REDCap) platform (Supplement A).^12,13 The questions were designed by the first and senior author, who have published numerous papers on sexual and reproductive health in transgender men, in consultation with community members who also had expertise in transmasculine sexual and reproductive health. The survey was informed by a previously published study with similar questions posed to providers.⁹ No formal validation process was undertaken. It consisted of both closed- and open-ended questions assessing knowledge of and experiences with reproductive and sexual health care in the context of gender affirming care. Only closed-ended questions are included in this analysis.

Statistical analysis

The analyses reported in this study reflect the survey’s surgical and anatomy knowledge questions. Analyses are primarily descriptive, with categorical variables presented as counts and percentages, and continuous variables presented as means and standard deviations. Missing data was managed by creating categories for missing data. Between-group comparisons were calculated using Chi-squared tests or one-sided Fisher’s Exact tests where at least one cell size was smaller than 5. The primary question of whether specific subgroups were more likely to answer additional knowledge questions correctly was analyzed using ordinal logistic regression. As our study did not meet power, we performed these comparisons and provided p-values for informational purposes, as tools to aid in comparing associations, but are not able to note statistical significance due to being under powered. The subset of the data focused on fertility knowledge and intentions amongst survey respondents have been published elsewhere.¹⁴

This research was determined to be exempt after review by the Boston Children’s Hospital Institutional Review Board (IRB-P00034082) as it was deemed to pose no more than minimal risk to participants. The reporting of this study conforms to the STROBE cross-sectional study guidelines (Supplement B).¹⁵

Funding

This study was supported by internal funding from the Division of Gynecology at Boston Children’s Hospital.

Results

Of the 187 respondents who began the survey, 125 had initiated testosterone for the purposes of gender affirmation at or prior to the age of 18, had been born with uterus and ovaries, and currently resided in the United States. It is this population who were included in the final analysis.

Respondent demographics are included in Table 1. Most were in their mid-twenties at the time of taking the survey and had initiated testosterone between the ages of 17 and 18 (n=85,67%). All but 8 individuals had been on testosterone continuously since initiation in adolescence, with a mean time on testosterone of 5.9 years, with those who had discontinued testosterone having been on it for a for a mean of 3.75 years. Respondents described their hormone therapy prescribers in a variety of ways including primary care, endocrinology, gynecology, and “trans care provider”.

Table 1.

Demographics and gender-affirming care characteristics.

Variable full population n=125	N (%)
Age in years (mean, (sd), [range])	23 (4) [18-42]
Latino/a/e	11 (9)
Race*
African american/Black	9 (7)
American indian/Alaska native	1 (1)
Asian	15 (12)
Caucasian	97 (94)
Multiracial	13 (10)
Prefer not to answer	2 (1)
Self-described gender
Agender	3 (2)
Gender nonconforming	2 (2)
Genderqueer	1 (1)
Man	27 (21)
Nonbinary	5 (4)
Trans-masculine	18 (14)
Transgender man	61 (49)
No answer	8 (6)
Identifies as transgender?
Yes	108 (86)
No	5 (4)
Unsure	3 (2)
Prefer not to answer/No answer	9 (7)
Identifies as intersex?
Yes	5 (4)
No	110 (88)
Prefer not to answer/No answer	10 (8)
Closest description(s) of sexual or romantic orientations ^†
Asexual	11 (9)
Bisexual	48 (38)
Gay	34 (27)
Straight	12 (10)
Lesbian	1 (1)
Pansexual	12 (10)
Polysexual	3 (2)
Queer	50 (40)
Questioning	2 (2)
Something else	2 (2)
Has health insurance	111 (95)
Type(s) of health insurance ^†
Medicaid	24 (19)
Medicare	1 (1)
Tricare/military	3 (2)
Employer based	32 (26)
Through family/spouse/partner/etc.	53 (42)
Purchased by you/family	4 (3)
Gotten on an exchange (federal/state)	4 (3)
Other	3 (2)
Currently a student
Yes – full time	33 (26)
Yes – part time	12 (10)
No	69 (55)
Prefer not to answer/No answer	11 (9)
Description of location where respondent lives
Urban	48 (38)
Suburban	56 (45)
Rural	13 (10)
No answer	8 (6)
Region where respondent lives (based on state)
Northeast	41 (33)
Midwest	15 (12)
South	29 (23)
West	32 (26)
No answer	8 (6)
Hormones respondent has ever used ^†
Gonadotropin releasing hormone analogue	3 (2)
Birth Control/menstrual suppression	55 (42)
Other	3 (2)
Hormones respondent currently uses ^†
Testosterone	111 (85)
Gonadotropin releasing hormone analogue	0 (0)
Birth Control/menstrual suppression	21 (16)
Other	2 (1)
Time on testosterone in years (mean, (sd), [range])	5.9 (3.9) [.25-24]
Age at testosterone initiation
13	1 (1)
14	2 (2)
15	13 (10)
16	18 (14)
17	23 (18)
18	62 (49)
No Answer	6 (4)
Types of doctors who prescribed testosterone
PCP	63 (48)
Endocrine	56 (43)
Gyn	10 (8)
Trans Specialist (not described above)	51 (39)
Other	3 (2)

^†Individuals could select multiple responses.

Figure 1(a) shows respondents’ current desires with regards to genital and reproductive surgeries. Roughly two-thirds (n=80, 64%) wanted to have a hysterectomy or had had one but only 48% (n=60) wanted or had had an oophorectomy. Those who desired to have a hysterectomy, oophorectomy, or salpingectomy mostly desired to do so for gender affirmation, or for both gender-affirming and non-gender-affirming reasons (Figure 1(b)).

Figure 1.

Interest in gender affirming surgeries and reasons for having had, or wanting surgeries on the internal reproductive organs.

Knowledge of reproductive anatomy

We asked patients a series of basic knowledge questions in Table 2 regarding the uterus and ovaries and hysterectomies. Slightly fewer than half of respondents (n=56, 45%) answered all four questions correctly. In all, 93% (n=116) correctly identified the purpose of the uterus, 70% (n=88) the ovaries, and 82% (n=103) correctly identified their physical relationship to one another. Of the four questions, the one most often answered incorrectly was the definition of a hysterectomy (n=78, 64%), although individuals who had had a hysterectomy were more likely to get that answer correct (92% vs 56%, p=.002).

Table 2.

Knowledge about reproductive anatomy and associated gender affirming surgical care.

Reproductive anatomy and surgical knowledge
What is the purpose of the uterus? ^†
To hold a pregnancy*	118 (90)
To produce eggs	29 (22)
I’m not sure/I don’t Know	6 (4)
Something else:	3 (2)
What is the purpose of the ovaries? ^†
To produce eggs⁑	116 (88)
To make hormones⁑	97 (74)
I’m not sure/don’t know	4 (3)
Something else	1 (1)
In most people who have them, the uterus and ovaries are:
Stuck together (can’t be separated)	7 (6)
Attached but can be separated*	77 (61)
Near each other, but not attached*	26 (21)
Not near each other	1 (1)
I’m not sure/don’t know	14 (11)
Something else	0 (0)
A hysterectomy is defined as
Removal of the uterus*	78(63)
Removal of the uterus, fallopian tubes, and ovaries	33 (27)
Removal of the fallopian tubes and ovaries	1 (1)
Removal of the ovaries	1(1)
I’m not sure/don’t know	7(6)
Something else	2(1)
Number of above questions answered correctly:
1	11 (9)
2	24 (19)
3	34 (76)
4	56 (45)

Understanding of the intersection between gender affirming care and the reproductive system:	Strongly agree	Agree	Not sure/don’t know	Disagree	Strongly disagree
If the uterus is surgically removed, the ovaries must be removed at the same time	0 (0)	8 (6)	30 (24)	34 (28)	51 (41)
If the uterus is surgically removed, the ovaries are always removed at the same time	1 (1)	7 (6)	29 (23)	30 (24)	56 (46)
If I have my uterus removed and leave my ovaries in, I cannot remove my ovaries later	0 (0)	0 (0)	42 (34)	41 (33)	40 (32)
If I have GAS where the vagina is closed off or removed, I have to remove my uterus	18 (15)	44 (36)	44 (36)	10 (8)	7 (6)
If I have GAS where the vagina is closed off or removed, I have to remove my ovaries	1 (1)	23 (19)	52 (42)	24 (20)	23 (19)
If I have GAS where the vagina is closed off or removed, there is no way to use my gametes (eggs) to create a pregnancy	5 (4)	18 (15)	38 (31)	49 (40)	13 (10)
There are options that would allow me to have my own genetically related child even if I’m on hormones	56 (45)	54 (44)	9 (7)	3 (2)	1 (1)
There is no way for someone to use their eggs to create a pregnancy after their uterus removed	1 (1)	9 (7)	25 (20)	51 (41)	37 (30)

^†Individuals could select multiple responses.

*Only this answer is correct, or either answer is correct.

⁑Both must be answered to be correct.

Those who answered all the knowledge questions correctly were more likely to have their testosterone prescribed by a gynecologist (p=0.02). In general, those who were interested in having one or more genital surgeries tended to answer more questions correctly. Those who had had or wanted to have a hysterectomy on average answered around one more knowledge question correctly (ologit coef 0.79, p=.02). When the whole population of individuals who wanted or had undergone a hysterectomy were queried about their desire to keep their ovaries, those who desired to keep ovaries, on average, got slightly more than one additional knowledge question right than those who did not want to keep their ovaries (ologit coef 1.24, p=.03). In contrast to the earlier knowledge questions, desiring a metoidioplasty or phalloplasty, or having had one, was associated with an average of slightly less than one additional question (ologit coef=0.75, p=.03) about GAS being answered correctly.

Understanding how gender affirming surgeries affect reproductive anatomy

In addition to the knowledge questions about anatomy, we asked a series of questions about individuals’ understanding of the relationship between gender affirming genital surgeries and that anatomy (Table 2). Most respondents agreed that removal of the uterus did not require removal of the ovaries, and that removal of the uterus with ovarian retention did not preclude future removal of the ovaries. More were unsure about the need to remove the uterus and/or ovaries if a vaginectomy was performed. In contrast to the earlier knowledge questions, desiring to have, or having had, a metoidioplasty or phalloplasty was associated with an average of slightly less than one additional question (ologit coef=0.75, p=.03) about GAS being answered correctly.

Recalled health counseling related to reproductive anatomy

Only a third of our respondents reported ever being counseled about what the uterus (n=42, 35%) and ovaries (n=43, 36%) are (Table 3). Slightly more (n=59, 49%) had received fertility preservation counseling, with the majority of those (n=53/59, 90%) being counseled prior to testosterone initiation. Roughly one third recalled being counseled on the effects of testosterone on the uterus and ovaries with the majority receiving this counseling from the clinicians who prescribed their testosterone.

Table 3.

Counseling experiences.

A clinician has counseled me on…	N(%)
…what the uterus is
Yes	42 (35)
No	67 (55)
Unsure	12 (10)
…what ovaries are
Yes	43 (36)
No	68 (56)
Unsure	10 (8)
…future fertility preservation
Yes	59 (49)
No	61 (50)
Not applicable	1 (1)
If yes, I was given this counseling…^†	N=59
Prior to gonadotropin releasing hormone analogues	3 (5)
While on gonadotropin releasing hormone analogues	2 (3)
Prior to testosterone	53 (90)
While on testosterone	34 (58)
Other	1 (2)
I specifically received counselling on the effects of testosterone on the…
Uterus	5 (4)
Ovaries	11 (9)
Neither	35 (29)
Both	47 (39)
Unsure/Don’t Know	23 (19)
This counseling was provided by…^†	N=63
Primary care provider	34 (54)
Endocrinologist	35 (56)
Gynecologist	20 (32)
Plastic surgeon	2 (3)
Mental health provider	9 (14)
Additional clinician	6 (10)
The person(s) who provided this counseling also provided my…	N=63
Therapy/mental health	11 (17)
Primary care	27 (43)
Gender affirming hormones	60 (95)
Gynecologic care	20 (32)
Gender affirming surgery	14 (22)
Something else	2 (3)
Have people encouraged or discouraged you from getting a hysterectomy?
Encouraged	17 (14)
Discouraged	17 (14)
Both	11 (9)
Neither	76 (63)
I was encouraged by…^†	N=28
Clinician	18 (64)
Parent/caregiver	10 (36)
Friends	13 (46)
Romantic/dating partner	8 (28)
Someone else	5 (18)
Type of clinician that encouraged^†	N=18
Primary care provider	13 (72)
Endocrinologist	5 (28)
Gynecologist	6 (33)
Plastic Surgeon	0 (0)
Mental health provider	5 (28)
Additional clinician	3 (17)
The encouraging clinician identified a hysterectomy as…	N=18
Removal of only the uterus	6 (33)
Removal of both uterus and ovaries	2 (11)
Didn’t specify	9 (50)
Something else	1 (5)
That clinician discussed the difference between removing ovaries and removing the uterus
Yes	6 (33)
No	12 (67)
Unsure	0 (0)
I was discouraged by…^†	N=28
Clinician	2 (7)
Parent/caregiver	21 (75)
Friends	4 (14)
Someone else	7(25)
Type of clinician who discouraged^†	N=2
Primary care provider	1 (50)
Endocrinologist	0 (0)
Gynecologist	2 (100)
Plastic surgeon	0 (0)
Mental health provider	0 (0)
Additional clinician	0 (0)

^†Individuals could select multiple responses.

Over the course of seeking gender affirming care, the majority of patients had neither been encouraged nor discouraged from seeking a gender affirming hysterectomy (Table 3). However, among those who were encouraged to undergo a hysterectomy, most recalled clinicians as the source of encouragement (n=18/28, 64%). Of the group who were encouraged to undergo a hysterectomy by a clinician, two-thirds of their clinicians discussed the difference between the removal of the ovaries and the removal of the uterus (n=12, 67%), and there was no consistency in how clinicians discussed hysterectomies, with some including just the uterus, some both the uterus and ovaries, and others not specifying. When given a chance to share reasons why people had been recommended to have a hysterectomy, the most common were to manage dysphoria or for gender affirmation (10), contraception (6), and to eliminate future bleeding (5).

A similar proportion of individuals recalled being discouraged from seeking a gender affirming hysterectomy. Parents were the dominant force in discouraging hysterectomy (n=21/28, 75%) within this sample. Reasons people gave for being discouraged from having a hysterectomy included risk of regret - including the possible desire for kids later in life (12), anti-trans statements about gender-affirming care (7), and risk of surgery and its long-term effects (5).

Desire for oophorectomy at the time of hysterectomy

More than half of our respondents had either had a hysterectomy or wanted to have one someday (n=80, 64%) (Table 4). Of these, 22% (18/80) knew they wanted to keep their ovaries, and an additional 18% (14/80) were unsure. A quarter of these individuals (n=8/32, 25%) wanted to keep only one ovary. Of those who had already undergone a hysterectomy, the majority (n=17/23, 74%) were offered the opportunity to keep their ovaries at the time of surgery, 3 of those who were considering maintaining their ovaries said they were not offered the option of keeping only one.

Table 4.

Oophorectomy decision making at the time of hysterectomy.

Oophorectomy decision making
Interested in having a hysterectomy
Have had it	23 (18)
Want it some day	57 (46)
Not sure if I want this	28 (22)
Do not want this	10 (8)
No answer	7 (6)
Wants to, or plans to, keep ovary or ovaries at the time of hysterectomy?	N=80
Yes	18 (22)
No	48 (60)
I was unsure	14 (18)
Wants to keep only one ovary	N=32
Yes	8 (25)
No	9 (28)
I was unsure	10 (31)
I wasn’t offered this	5 (16)
Offered the opportunity to keep one or both ovaries at the time of hysterectomy	N=23
Yes – either one or both	17 (72)
Yes – only keep both, not one	1 (4)
No	4 (18)
Unsure	1 (4)

Discussions

In this study exploring the reproductive counseling experiences and knowledge of transgender men who started testosterone during adolescence, most respondents had basic knowledge of the function of the uterus and ovaries, and their location to one another, but they were less knowledgeable about the approach to surgical removal. That represents an area for improvement, as more than half of the population had either had a hysterectomy or were planning on having one in the future. Clinicians providing this counseling should be sure to include holistic counseling about anatomy, changes associated with testosterone therapy, and surgical options so patients can make informed decisions.

Accurate counseling on the effects of gender affirmation on reproductive anatomy and function is important in the years leading up to surgery in order to allow patients time to consider the potential impacts of hysterectomy as a major, permanent, and irreversible procedure. While the clinician who performs the procedure is ultimately responsible for counseling accurately, based on our patient sample, most patients got their initial information on hysterectomy and the reproductive effects of testosterone from the clinicians who prescribed their testosterone or even the one who provided their mental health support. As such, there is a need for guidelines that include this information to not just be gynecologic specific but accessible to all clinicians providing gender affirming testosterone therapy and associated care.

The major counseling guidelines for gender affirming care include fertility counseling and often a discussion of amenorrhea in response to gender affirming testosterone therapy.^16,17 However, they don’t explicitly recommend discussion of other reproductive effects of testosterone. This lack of discussion is reflected in our data as well. While almost half of our respondents recalled fertility preservation counseling either before starting testosterone or while they were taking it, including its effects on the uterus and/or ovaries, only around a third recalled counseling about the function of these organs. As the effects of testosterone on the uterus and ovaries may go beyond those affecting fertility, it is important for guidelines to include information to help clinicians provide accurate and wholistic reproductive counseling to patients initiating testosterone. The North American Society for Pediatric and Adolescent Gynecology has started to address this gap in the literature by putting forth comprehensive counseling and care guidelines for transgender adolescents.¹¹ These guidelines emphasize holistic counseling that goes beyond the fertility impact of testosterone to educate patients on the other possible impacts of testosterone treatment on sexual and reproductive health, and we believe that this will help address the knowledge gaps seen in our study.

Part of the difficulty in counseling in this area is the heterogeneity in beliefs that not just patients but providers hold about the effects of testosterone on the reproductive organs and what can and should be done to address them.⁹ This knowledge gap has the potential to affect patients’ decision-making about reproductive surgeries in a number of ways. The fact that so many individuals were uncertain about how testosterone affects their fertility and the intersecting impacts of potential reproductive surgeries may directly affect their decision-making.¹⁴ However, approximately a quarter of individuals in our study also reported being actively encouraged to have a hysterectomy and/or discouraged from having one. The majority of those who were encouraged to have a hysterectomy experienced that encouragement from clinicians. This is consistent with past studies where clinicians have both encouraged and discouraged hysterectomies and patients have held various beliefs about their uterus on testosterone, such as it can get infected or put their health at risk if it remains in situ.⁹ The majority of the discouragement came from family, which is also consistent with literature suggesting that parents and caregivers may be more concerned with the loss of their children’s future fertility potential than the young people themselves.¹⁸

As new counseling guidelines are developed, it is important to recognize that this diversity of beliefs is not necessarily based on misinterpretations of data but also emblematic of the gaps in our knowledge about the health of the uterus and ovaries under long-term testosterone. This includes understanding the success rates of individuals seeking to get pregnant after extended periods on testosterone, the risk of breakthrough bleeding and pelvic pain in the short and long term, the effects of non-surgical approaches to management of bleeding and other pelvic symptoms, and the risks of pregnancy on testosterone.^3,19–28 It also means understanding the long-term risks of undergoing a hysterectomy early on in life. Currently, most data on hysterectomy are in individuals who are older, or who have other comorbidities, which may influence their postoperative risks for concerns such as pelvic pain and prolapse.^29–31 Greater data specific to the transgender community is needed, in particular, long-term follow-up studies on pelvic and sexual health.

One bright spot in this data is that the majority of individuals in this study who underwent a hysterectomy were offered the opportunity to keep their ovaries. This is consistent with contemporary pushes to disaggregate conversations about gender affirming hysterectomy from oophorectomy and offering patients the opportunity to consider the pros and cons of removing ovaries at the time of hysterectomy.¹¹ This is a change from studies using data from earlier in the 2000s, which found that oophorectomy at the time of hysterectomy appeared to be the standard for transgender men.^32,33 In this sample, half of the population still decided to remove their ovaries, which is in line with recent studies of patients who have been provided the option.⁸ This supports the importance of counseling about ovarian retention or removal at the time of hysterectomy, but also that guidelines for this counseling should be available to all gender affirming care providers, as patients may seek conversations with those clinicians in the years leading up to decisions about surgeries. This includes discussing the potential for future fertility use of oocytes as well as the potential to use endogenous estrogen as their primary sex steroid support for long-term health should they lose access to, or discontinue, testosterone.^7,11

Limitations

The limitations of this sample reflect those inherent to many survey studies. It was disseminated via a survey platform and through snowball sampling within the community. Therefore, those who accessed the survey likely hold certain characteristics that may not be reflective of the broader transgender population who initiated testosterone in adolescence. This includes individuals who may have more internet access, be more educated, and may be more invested in transgender health and thus more likely to participate in a survey about it. It is also important to acknowledge that those who do access hormones earlier in life may have greater socioeconomic means to access health care; they may thus be more likely to have access to spaces where this survey was shared, but they may also have greater access to counseling and information sources for similar reasons.^34–36

This study was limited to individuals in the United States to minimize the influence of different countries’ policies on gender affirming care. While that limits its applicability internationally, the respondents did represent a broad swathe of the United States. However, it does not capture non-English speaking transgender individuals. As the purpose was to understand counseling that occurred in adolescence, this study does not include individuals who started testosterone after the age of 18, whose experiences may be similar but would need further study to better understand. The survey was limited by recall bias, though we hoped to mitigate it in the panel sample by recruiting only individuals under 35. As the survey was online, there is a possibility that respondents used online search resources or artificial intelligence tools when answering questions, thus influencing the rates of correct answers.

A validated survey was not available for use; however, the survey was built upon a previously published survey of similar content for clinicians.⁹ This allowed for comparison of knowledge and belief heterogeneity across the two samples. Additional study strengths include the diversity of patient goals related to surgical gender affirmation, affording us the opportunity to better understand how a heterogenous group of transgender men on testosterone might interpret uterine, ovarian, and hysterectomy counseling, not just those who underwent or even wanted hysterectomy.

Conclusion

Clinicians who work with transgender male patients starting testosterone should endeavor to provide more holistic counseling around not the effects of testosterone, but the impacts of potential surgical-gender affirmation choices on sexual and reproductive health. In this cohort of transgender men who started testosterone during adolescence, most individuals had basic knowledge of the function of the uterus and ovaries, and their locations, but were less knowledgeable about information relevant to surgery, even though a substantial number either had had or were seeking hysterectomy and had discussed it with clinicians. Our data suggest that transgender patients who seek testosterone may start thinking about hysterectomy for gender affirmation early in adolescence even if the procedure is not accessible to them until the age of majority. Because of this, there is a need for clear guidelines to inform clinician counseling, so that patients can receive information from the start about the impact of testosterone on these organs, the surgical options available to them, and how these fold into their gender journey. There also remains a substantial need for research on the long-term impacts of both gender affirming testosterone, and gender affirming hysterectomy, on reproductive anatomy and sexual health.

Supplemental material

Supplemental material - A survey of reproductive anatomy and gender affirming hysterectomy knowledge among transgender men who started testosterone at or before 18 years old

Supplemental material for A survey of reproductive anatomy and gender affirming hysterectomy knowledge among transgender men who started testosterone at or before 18 years old by Frances W. Grimstad, Emile Redwood, Til Parsa, and Elizabeth R. Boskey in Women’s Health.

Supplemental material

Supplemental material - A survey of reproductive anatomy and gender affirming hysterectomy knowledge among transgender men who started testosterone at or before 18 years old

Footnotes

ORCID iDs

Frances W. Grimstad

Elizabeth R. Boskey

Ethical considerations

This research was determined to be exempt after review by the Boston Children’s Hospital Institutional Review Board (IRB-P00034082).

Consent to participate

A statement regarding the study and consent was provided before beginning and participants were made aware that by continuing to perform the survey they consented to participation, constituting written consent.

Author contributions

Frances Grimstad: Conceptualization, Methodology, Writing – Original Draft, Review & Editing, Funding Acquisition, Supervision Emile Redwood: Conceptualization, Writing – Review & Editing; Til Parsa: Conceptualization, Methodology, Writing – Review & Editing; Elizabeth Boskey: Project administration, Methodology, Formal analysis, Writing – Review and Editing.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the Division of Gynecology at Boston Children’s Hospital.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

Data is not publicly available due to IRB guidelines under which this study was created.*

Supplemental material

Supplemental material for this article is available online.

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