Living with Endometrial stromal sarcoma
A rare cancer that starts in the supporting tissue of the uterus.
Understanding Endometrial stromal sarcoma
It happens when cells grow abnormally and out of control. Signs can include bleeding that is not part of a period or that happens after menopause, belly pain or swelling, and needing to urinate often. Most cases occur with no family history of the condition.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Unusual bleeding from the uterus
- Bleeding after menopause
- Belly pain
- Belly swelling (distension)
- Needing to urinate often
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, gynecologic cancer specialists, maternal-fetal medicine specialists and women’s reproductive health specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Foundation for Women's Cancer, Sarcoma Alliance and Sarcoma Foundation of America may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Gynecologic cancer specialists (gynecologic oncologists); Maternal-fetal medicine specialists (pregnancy-related); Women’s reproductive health specialists (obstetricians / gynecologists)
- Expert care
- Expert lists: Foundation for Women's Cancer, Sarcoma Alliance, Sarcoma Foundation of America
- 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 Foundation for Women's Cancer and other patient organizations
- 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 exact cause is unknown. Most cases occur sporadically, which means by chance, in people with no family history.
Also known as: endometrial sarcoma; endometrial stromal sarcoma, high grade; endometrial stromal sarcomas; endometrioid stromal sarcoma; ess; sarcomas, endometrial stromal
Patient organizations
- Foundation for Women's CancerEndometrial stromal sarcoma · United States
- Sarcoma AllianceEndometrial stromal sarcoma · United States
- Sarcoma Foundation of AmericaEndometrial stromal sarcoma · United States
- Cancer Hope NetworkEndometrial stromal sarcoma · United States
- CancerCareEndometrial stromal sarcoma · United States
- American Cancer SocietyGynecological tumors · United States
- SHARE: Cancer SupportGynecological tumors · United States
You are more than your diagnosis
Perspectives from people navigating life with Endometrial stromal sarcoma.
Explore research for Endometrial stromal sarcoma
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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