Disseminated peritoneal leiomyomatosis

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8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Disseminated peritoneal leiomyomatosis (DPL) is a very rare, non-cancerous condition in which smooth muscle tissue grows in many places throughout the lining of the abdomen (called the peritoneum). These growths, called leiomyomas, are benign tumors made of smooth muscle cells. The condition is also sometimes called leiomyomatosis peritonealis disseminata (LPD). While the tumors are not cancer, they can spread widely across the abdominal cavity, covering surfaces of organs like the bowel, liver, and uterus. Most people diagnosed with DPL are women of reproductive age, and the condition is strongly linked to hormones — especially estrogen and progesterone. Many cases are discovered during pregnancy or while a woman is taking hormonal contraceptives. Symptoms can include abdominal pain, bloating, and a feeling of fullness or pressure in the belly. In some cases, the condition causes no symptoms at all and is found by accident during surgery or imaging for another reason. Treatment depends on how severe the condition is. In many women, the tumors shrink or disappear after pregnancy ends or hormonal medications are stopped. In other cases, surgery to remove the growths or hormone-blocking medications may be needed. Rarely, the condition can behave more aggressively, and close monitoring is important. Overall, the outlook for most patients is good, especially when the hormonal trigger is identified and addressed.

Also known as:

Key symptoms:

Abdominal pain or crampingBloating or swelling of the bellyFeeling of fullness or pressure in the abdomenNauseaConstipation or changes in bowel habitsPelvic painFatigueAccidental discovery during abdominal surgery (no symptoms)Abdominal mass felt by a doctor during examination

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

6 events
Apr 2025Direct Comparison of Altered States of Consciousness Induced by LSD, Psilocybin, and DMT in Healthy Participants

University Hospital, Basel, Switzerland — PHASE1

TrialRECRUITING
Nov 2024Understanding the Mechanisms of Clonal and Non-clonal Cytopenia Following CAR-T Therapy for Multiple Myeloma or CD19+ Lymphoproliferative Disorder (LPD)

Mayo Clinic — NA

TrialRECRUITING
Nov 2024Improved Myeloablative Allogeneic Hematopoietic Stem Cell Transplantation Protocol for the Treatment of Epstein Barr Virus T/NK Lymphoproliferative Disease (EBV-T/NK LPD) and Prevention of Post Transplant Graft-versus-host Disease

Beijing Children's Hospital — PHASE4

TrialRECRUITING
Jun 2023A Multicenter Prospective Randomized Controlled Study of RPD Versus LPD

The First Affiliated Hospital of University of South China — NA

TrialNOT YET RECRUITING
Nov 2022Low-Protein Diet With Low-Protein Foods Versus a LPD Without LP Foods in Patients With Chronic Kidney Disease (CKD)

Dr. Schär AG / SPA — NA

TrialRECRUITING
Jan 2020The Differences of Complications Between LPD(Laparoscopic Pancreaticoduodenectomy) and OPD(Open Pancreaticoduodenectomy)

Zhijun Bao

TrialENROLLING BY INVITATION

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Disseminated peritoneal leiomyomatosis.

View clinical trials →

No actively recruiting trials found for Disseminated peritoneal leiomyomatosis at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Disseminated peritoneal leiomyomatosis community →

No specialists are currently listed for Disseminated peritoneal leiomyomatosis.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Disseminated peritoneal leiomyomatosis.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Disseminated peritoneal leiomyomatosis

Disease timeline:

New recruiting trial: Understanding the Mechanisms of Clonal and Non-clonal Cytopenia Following CAR-T Therapy for Multiple Myeloma or CD19+ Lymphoproliferative Disorder (LPD)

A new clinical trial is recruiting patients for Disseminated peritoneal leiomyomatosis

New recruiting trial: Direct Comparison of Altered States of Consciousness Induced by LSD, Psilocybin, and DMT in Healthy Participants

A new clinical trial is recruiting patients for Disseminated peritoneal leiomyomatosis

New recruiting trial: Improved Myeloablative Allogeneic Hematopoietic Stem Cell Transplantation Protocol for the Treatment of Epstein Barr Virus T/NK Lymphoproliferative Disease (EBV-T/NK LPD) and Prevention of Post Transplant Graft-versus-host Disease

A new clinical trial is recruiting patients for Disseminated peritoneal leiomyomatosis

New recruiting trial: Low-Protein Diet With Low-Protein Foods Versus a LPD Without LP Foods in Patients With Chronic Kidney Disease (CKD)

A new clinical trial is recruiting patients for Disseminated peritoneal leiomyomatosis

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.Is my DPL likely related to hormones, and should I stop my current hormonal medication?,Do I need surgery, or can we watch and wait to see if the tumors shrink on their own?,How often should I have follow-up imaging or check-ups to monitor for changes?,Is there any risk that my tumors could become cancerous, and how would we detect that early?,Will this condition affect my ability to get pregnant in the future?,What symptoms should prompt me to seek emergency care?,Are there any clinical trials or specialists in rare smooth muscle tumors I should see?

Common questions about Disseminated peritoneal leiomyomatosis

What is Disseminated peritoneal leiomyomatosis?

Disseminated peritoneal leiomyomatosis (DPL) is a very rare, non-cancerous condition in which smooth muscle tissue grows in many places throughout the lining of the abdomen (called the peritoneum). These growths, called leiomyomas, are benign tumors made of smooth muscle cells. The condition is also sometimes called leiomyomatosis peritonealis disseminata (LPD). While the tumors are not cancer, they can spread widely across the abdominal cavity, covering surfaces of organs like the bowel, liver, and uterus. Most people diagnosed with DPL are women of reproductive age, and the condition is str

How is Disseminated peritoneal leiomyomatosis inherited?

Disseminated peritoneal leiomyomatosis follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Disseminated peritoneal leiomyomatosis typically begin?

Typical onset of Disseminated peritoneal leiomyomatosis is adult. Age of onset can vary across affected individuals.