Twenty-eight-year-old Ada, a pseudonym, and her boyfriend had reached the point of discussing marriage, but she was keeping a major secret from him: she has MRKH.

MRKH, short for Mayer-Rokitansky-Küster-Hauser syndrome and also known as Müllerian agenesis, is a rare congenital disorder of the female reproductive system, affecting approximately one in 4,500 to 5,000 women. Most patients are born without a uterus and with an absent or underdeveloped vagina. In China, women with the condition have long been derogatorily labeled “stone women.”

Ada knew the condition could complicate her sex life, but she believed that was something she could address before marriage. She researched MRKH on her own and eventually found Shenzhen Luohu District People’s Hospital, in the country’s south, where she planned to undergo vaginal reconstruction surgery.

She told no one but her mother about the procedure. And saw little reason to tell her boyfriend. “After vaginal reconstruction, nothing will really feel any different (for him). I can give him the same thing, so why do I need to spell it out? If I did, it would only affect him psychologically.”

Like many MRKH patients, Ada was drawn to Shenzhen Luohu District People’s Hospital by its reputation. Although it is administratively only a district-level hospital, it has become a leading center for MRKH treatment. More than 20 years ago, doctors there pioneered the “Luohu technique,” a form of laparoscopic peritoneal vaginoplasty in which the vagina is reconstructed using tissue from the patient’s abdominal cavity. Since then, the hospital has performed more than 5,000 operations for various congenital malformations of the lower female reproductive tract, treating more MRKH patients than any other medical institution in China.

Many of these patients endure a long, painful search for medical care before finding their way to Luohu. They typically first seek treatment during adolescence because they have never had a period, or because they experience cyclical abdominal pain without menstrual bleeding. At the hospitals they visit, they may be the first MRKH patient doctors have encountered. Some are examined with multiple people looking on, only to be bluntly told that nothing can be done.

But the medical experience is only one source of pain. Patients must also contend with social and cultural pressures that can profoundly affect how they see themselves. Sighs and self-recrimination from family members can gradually lead patients to internalize the belief that they are not “complete women.” The question of whether to disclose their condition to an intimate partner can be equally fraught, bringing self-doubt and inner conflict, whatever they decide.

Research my team conducted suggests these anxieties also shape seemingly ordinary aspects of daily life. Some people with MRKH avoid public baths, swimming pools, and changing rooms. Even walking down the sanitary pad aisle in a supermarket can make them uncomfortable.

At Luohu District People’s Hospital, patients have a good chance of having their physical condition treated. But successful surgery rarely puts an end to their troubles. Dr. Qin, the clinical lead, told me frankly that surgical success marks only a biological transformation of the body. Patients still face the long process of returning to family life and rebuilding intimate relationships. A major gap exists between successful treatment and this broader recovery process, one doctors cannot fill on their own.

Even within this medically advanced team, some unease remains. Team members worry that outsiders could misunderstand reconstructive procedures involving intimate reproductive organs as dubious or unorthodox. Doctors are therefore often reluctant to talk openly about the procedures, while patients can feel they have been left to navigate their implications alone. The silence on both sides reinforces the problem.

This is precisely where medical social work can play a role.

In the autumn of 2025, after spending three months conducting sociological research with MRKH patients and the medical professionals who treat them, I joined Luohu District People’s Hospital’s Gynecology Department 3 as the supervisor of a team of social workers. We began providing medical social services for MRKH patients, helping them rebuild their sense of identity and dignity while encouraging medical professionals to shift their focus from “treating illness” toward “treating the person.”

After all, surgeons can reconstruct the body, but recovery involves more than the physical: patients must also rebuild their sense of self and return to society with dignity.

From the beginning, I knew we were in largely uncharted territory. China has no standardized assessment tools designed specifically for people with MRKH, nor an established, validated model for providing them with social services. Therefore, we had to develop our approach within the constraints of a working hospital, learning from patients and refining our methods as we went.

Our work gradually took shape in three areas.

First, we tried to bridge the gap between physical and psychological care by taking on emotional needs that clinical treatment could not easily meet.

Negative medical experiences have made many patients highly sensitive about exposing their bodies. Even an ordinary consultation room can easily trigger traumatic memories of being examined while others watched. We worked with the department to train medical staff in gender sensitivity and ethics. With their support and cooperation, we also secured private spaces for one-on-one conversations and made small changes to the rehabilitation area to make it feel less clinical and reduce patients’ discomfort when seeking care.

Our individual work with patients focused in part on helping them separate their physical differences from their sense of self-worth. Social workers encouraged them to question beliefs they had internalized, particularly the idea that “without a uterus, I am not a complete woman,” and to develop a healthier relationship with their bodies.

There are limits to what we can do. Because no locally developed assessment tool exists for MRKH patients, we rely on interviews and clinical observation to track changes in their physical and psychological well-being. Budgetary and institutional constraints also limit how much we can change the care environment.

Second, we sought to break the isolation surrounding MRKH by creating spaces for peer and family support.

We organized small in-person patient-sharing sessions and themed support groups. These included highly practical exercises such as what we call “disclosure rehearsals,” which help patients think through conversations with intimate partners in advance. If a partner asks about the condition, how should the patient respond? What are they comfortable disclosing? What risks might different approaches carry, and how might a partner react?

We also experimented with family interventions. Through family meetings, we tried to help relatives move beyond the entrenched belief that a woman’s value is tied to her ability to reproduce. At the same time, we established an online peer-support community where patients could connect.

But these efforts created challenges of their own. Many patients worried about their identities being exposed, so willingness to participate in person varied considerably. Online, we had to strike a difficult balance between allowing members to support one another and preventing the spread of medical misinformation or the amplification of distress. Some families were also deeply reluctant to discuss MRKH at all and refused to participate in family meetings.

Third, we began looking beyond the immediate clinical setting through modest advocacy efforts.

At this early stage, we were not seeking sweeping policy reform. Instead, we focused on specific problems we encountered in our work. Some patients, for example, struggled to afford surgery. We also encountered language in primary medical settings that objectified women or reduced them to their reproductive functions.

In response, our social workers contacted the She Unbinds Asia Foundation to explore dedicated financial support for people with MRKH, prioritizing patients experiencing financial hardship. But securing such dedicated funding is difficult and inherently uncertain. A stable system of financial support remains out of reach.

Despite these difficulties, I am determined to continue. Supervising this exploratory social work project has made me deeply aware that dignity is not restored through a single intervention. It is rebuilt little by little, through interactions between patients, medical professionals, social workers, and families.

Our efforts have also borne tangible results. Patients are testing different ways to navigate everyday life and gradually learning to live with their condition on their own terms. Social workers, too, are learning through trial and error, continually adjusting and refining their approaches.

The lessons extend beyond MRKH. Every year in China, large numbers of people with rare diseases enter operating rooms and leave the hospital with their physical conditions treated but the wounds to their sense of identity still unhealed. Yet social services for these patients remain severely underdeveloped.

Every obstacle we have encountered in Luohu, and every lesson we have learned, can therefore serve as a signpost for those who follow. Our experience may help not only support people with MRKH, but also develop locally grounded approaches to medical social work for other rare diseases and hidden illnesses in China.

As a university educator, I can also bring what we have learned back into the classroom. It shows students that social work is more than textbook theory. It is the painstaking work of helping people whose experiences place them outside the mainstream rebuild their dignity within the very real constraints of the world around them.

With contributions from Yang Feixu and Ni Sihan.

Translator: Gabriel Kwan.

(Header image: iStock/VCG)