Living with Disseminated peritoneal leiomyomatosis
A rare, usually noncancerous condition with small smooth-muscle lumps on the lining of the abdomen and nearby organs.
Understanding Disseminated peritoneal leiomyomatosis
It is usually benign (noncancerous), though in rare cases it has become cancerous. It most often affects women of childbearing age. Most women with DPL are pregnant, taking the birth control pill, or have uterine fibroids or estrogen-secreting tumors. Some cases resolve when hormone levels return to normal. Surgery may be suggested based on the size and location.
Signs & symptoms
Some people have no symptoms. When present, GARD lists these:
- Abdominal pain
- Pelvic pain
- Rectal or vaginal bleeding
- Constipation
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Cancer specialists (oncologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with rare disease patient organizations for support
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says the cause is unknown but may be linked to hormonal and genetic factors.
Also known as: diffuse peritoneal leiomyomatosis; dpl; dpl - disseminated peritoneal leiomyomatosis; leiomyomatosis peritonealis disseminata; leiomyomatosis peritonealis disseminate; leiomyomatosis, peritonealis disseminata
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Disseminated peritoneal leiomyomatosis.
Explore research for Disseminated peritoneal leiomyomatosis
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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