Introduction
Uterus transplantation (UTx) is the only treatment for absolute uterine
factor infertility (AUFI) that allows women to carry a pregnancy. AUFI
affects 1-5% of women of childbearing age and is caused by either
congenital (e.g., Mayer-Rokitansky-Kuster-Hauser Syndrome [MRKH]) or
acquired (e.g., hysterectomy) absence of the uterus.1To date there have been at least 60 UTx reported
throughout the world and 20 live births.2-4 Baylor
University Medical Center (BUMC) has the largest worldwide experience
with UTx, having performed 20 UTx resulting in 14 live births to
date.5 The goal of UTx is to improve the quality of
life for women with AUFI by offering them the opportunity to experience
pregnancy and childbirth. UTx has been shown to be reproducible, safe,
and successful in terms of live births in multiple studies across the
world. Despite the clinical success of UTx, many questions remain about
the value of UTx given that its purpose is to improve patients’ quality
of life.
Three qualitative studies about uterus transplantation have examined the
motivations of women with AUFI to consider UTx, the impact of UTx on the
lives of recipients, and recipients’ perceptions of informed consent and
decision-making for UTx. Richards and colleagues interviewed 19 women
with AUFI who expressed interest in UTx clinical trial participation but
had not undergone uterus transplantation. They found that the diagnosis
of AUFI negatively impacted self-identity in terms of perceiving
themselves as less female and relationships with family, peers, and
partners at different life stages. Participants conceptualised UTx as a
way to regain reproductive autonomy that was not feasible with adoption
or surrogacy.6 Jarvholm and colleagues interviewed 9
UTx recipients up to 5 years following UTx to examine the impact of UTx
on recipients’ lives in terms of how UTx changed self-perception,
body-image, and sexuality.7 Wall and colleagues
interviewed 20 UTx recipients about their perceptions of informed
consent and decision making.8 Participants were well
informed, motivated primarily by the desire to achieve motherhood
through pregnancy, and felt that surrogacy and adoption did not offer
the same perceived value as UTx. Wall and colleagues also reported a
case series of the pregnancy experiences of the first two UTx recipients
at their centre to successfully deliver a child.9These UTx recipients perceived their pregnancies as similar to other
women, and derived significant personal value from their experiences.
To date, no studies have compared how women who chose to undergo UTx
experience AUFI and UTx or how UTx recipients perceive their experience
with UTx in terms of reproductive autonomy. To examine these aspects of
UTx, we conducted a mixed methods study of 20 UTx recipients from the
Dallas UTerus Transplant Study (DUETS) focused on advancing our
understanding of how AUFI impacts women who undergo UTx, how UTx impacts
women with AUFI, and how UTx recipients view UTx in terms of their
reproductive autonomy.