MRKH Syndrome Treatment Options

The MRKH Care Center provides comprehensive care for people with MRKH. Our treatments and services include:

• Gynecologic care
• Physical therapy from a pelvic health specialist
• Psychological and emotional support for patients and families
• Evaluation of other body systems and care needs
• Vaginal lengthening through self-dilation and surgery, as needed. Vaginal dilation involves using a dilator to stretch and lengthen the vaginal tissue.

The MRKH Care Center also collaborates with the Differences of Sex Development (DSD) Center at Cincinnati Children’s. Together we offer patients and their families opportunities to participate in research studies to improve our understanding and treatment of DSD conditions, including MRKH.

As patients are ready to transition to an adult care team, we will provide referrals and a “warm handoff” to adult care gynecologists, physical therapists and mental health providers in the patient’s community.

Gynecologic Care for People with MRKH Syndrome

Patients at the MRKH Care Center receive multidisciplinary care from providers with expertise in MRKH.

Our pediatric gynecologist has expertise in treating patients who have MRKH. In addition to focusing on MRKH, she offers routine gynecology care for people with the condition. This care includes gynecologic exams, breast exams, screenings and evaluations of discharge, skin changes, bleeding, and pelvic or vaginal pain.

Our team also provides education, resources and referrals for people with MRKH interested in building their family through adoption or fertility procedures.

Physical Therapy From a Pelvic Health Specialist for MRKH Syndrome

Our pelvic health physical therapist (PT) offers specialized care to help people with MRKH who experience:

• Bowel and bladder dysfunction
• Pain and discomfort
• Pelvic floor and core muscle dysfunction

Our physical therapist has advanced training in pelvic health and addressing concerns related to MRKH. She provides a personalized evaluation and creates a custom treatment plan, which can include:

• Exercises to improve strength, mobility and function
• Breathing, relaxation and stretching techniques
• Extra support for patients who are learning how to do self-dilation or preparing for surgical vaginal lengthening

Patients can see a physical therapist during every visit to the MRKH Care Center. They may schedule additional appointments as needed.

Psychological and Emotional Support for People with MRKH

A diagnosis of MRKH can be distressing and create anxiety. Our team’s goal is to empower patients and families to become more resilient, support one another through challenging times and develop valuable life skills. Our psychological and social work services help patients and families work through their experience with the diagnosis and come out stronger on the other side.

Our clinical psychologist and social worker are available to patients and parents at every MRKH care team appointment. They also can schedule follow-up appointments (including psychology telehealth visits) when needed. Our team also provides referrals to local providers when that is more convenient for families living outside the Greater Cincinnati area.

Psychological Care for Patients with MRKH

Our clinical psychologist offers many types of evidence-based therapies for patients with MRKH, including:

• Education about MRKH
• Therapies that help patients accept their diagnosis, understand how MRKH affects how they feel about themselves and manage the range of emotions related to an MRKH diagnosis
• Mind / body exercises to manage stress, anxiety and pain
• Communication strategies to share the diagnosis with important other people and enhance the ability to self-advocate
• Support for those deciding whether to pursue vaginal lengthening

Social Work Support for Parents

The social worker offers many types of support for parents and other family members, including:

• Education about MRKH
• Help navigating feelings around the diagnosis
• Guidance about how to support their child in a healthy way

Vaginal Lengthening for MRKH Syndrome

Some people with MRKH choose to lengthen their vagina through dilation or surgery. There is no rush to decide whether to pursue this option—the timing and treatment are entirely up to the individual.

Vaginal Lengthening Through Self-Dilation

Dilation (using a dilator to stretch and lengthen the vaginal tissue) occurs most successfully with consistent daily dilation. It can take three to 12 months. Vaginal dilation is successful for more than 90% of people who do it consistently.

Our team provides extensive support and coaching to help patients overcome pain or stress around dilation and succeed with self-dilation. Our physical therapist provides additional techniques to help minimize pain related to the pelvic floor muscles.

Vaginal Lengthening Through Surgery

Patients who do not achieve the desired results with self-dilation may consider surgery. At Cincinnati Children’s, we offer several types of surgical procedures for vaginal lengthening. The umbrella term for these procedures is vaginoplasty. The goal is to lengthen the vagina surgically.

• Vecchietti procedure

  Involves placing a small dilator against the vaginal opening. The vaginal dilator is attached via strings (sutures) through the abdomen to another device outside the abdomen. This puts tension on the dilator to very gradually lengthen the space. The constant tension creates a longer vaginal canal. A second surgery is needed to remove the dilator / abdominal device.

• Buccal graft

  Uses tissue from the patient’s mouth (inner cheek) to line the surgically created vaginal space.

• McIndoe procedure

  Involves taking a skin graft from the buttocks, thigh or another area on the individual’s body. The graft is used to line the space created for the vaginal canal.

• Bowel graft

  Uses tissue from the patient’s bowel to line the surgically created vaginal space.

Consistent post-op dilation is necessary to maintain the vagina after each vaginoplasty surgery. This can involve wearing a vaginal mold or doing self-dilation. The goal is to prevent scarring / narrowing of the vaginal canal, particularly in the initial healing phase. Once healed, consistent dilation (or sexual intercourse) is important to maintain vaginal length.

Not every patient is a candidate for every type of vaginal lengthening surgery. Our care team provides a complete work-up and surgical recommendations for patients who do not gain adequate vaginal length with dilation.