Living with Ovarian hyperstimulation syndrome
A rare condition, usually after fertility hormone treatment, in which the ovaries swell and fluid shifts into the belly and chest.
Understanding Ovarian hyperstimulation syndrome
The ovaries enlarge, and fluid shifts out of the blood vessels into the belly, chest, and, less often, around the heart. Symptoms include belly swelling, pain, nausea, and vomiting. Severity ranges from mild to severe, and it can raise the risk of blood clots, kidney and liver problems, breathing problems, and ovarian twisting or rupture. GARD lists onset as teenager and adult.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Belly swelling and pain
- Nausea and vomiting
- Fluid in the belly (ascites)
- Fluid around the lungs (pleural effusion)
- Enlarged ovaries with cysts
- Excess hair growth (hirsutism)
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 genetic specialists, maternal-fetal medicine specialists and women’s reproductive health specialists.
- 3Consider genetic testing
Changes in FSHR are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Genetic specialists (geneticists); Maternal-fetal medicine specialists (pregnancy-related); Women’s reproductive health specialists (obstetricians / gynecologists)
- 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
It usually follows treatment with ovary-stimulating hormones. GARD also lists the FSHR gene with autosomal dominant inheritance, meaning one changed copy of the gene can be enough.
Also known as: ohss; ovarian hyperstimulation syndrome, familial gestational spontaneous; secondary meig's syndrome
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 Ovarian hyperstimulation syndrome.
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