Your symptoms, concerns, priorities and goals should be taken seriously. You should have the opportunity to participate in decisions about your care and to ask questions until you understand the proposed plan. Severe menstrual or pelvic symptoms should not be dismissed simply because endometriosis can be difficult to diagnose.

You should receive information about your condition, reasonable treatment choices, expected benefits, important risks and alternatives in language you can understand. Ask for clarification, an interpreter or written information when needed. Understanding your choices is part of informed decision-making.

Before an operation, you should understand why surgery is recommended, what is planned, important risks and alternatives, and what additional procedures might become necessary if unexpected disease is found. Consent should be obtained before the operation, while you are able to make an informed decision.

Ask who will be the primary surgeon and who else may participate. If deep or multi-organ endometriosis is suspected, ask whether the team has appropriate experience and whether bowel, urologic or other specialists will be available if needed. You may also ask about trainees and their role in your care.

It is reasonable to ask how much endometriosis surgery your surgeon performs, whether they regularly treat ovarian endometrioma and deep disease, and what advanced training they have. MIGS training can be valuable, but it does not automatically establish expertise in every form of complex endometriosis.

If you are uncertain about the diagnosis, proposed treatment, fertility consequences or extent of surgery, you can ask another qualified clinician to review your case. A second opinion can be particularly valuable before major surgery, repeat surgery, ovarian surgery or treatment involving the bowel, bladder, ureter or other organs.

HIPAA generally gives access to your health information in a covered entity's designated record set, with limited exceptions. You may request an amendment if information is inaccurate or incomplete. A request is not a guarantee of a change; if denied, you may submit a statement of disagreement.

After endometriosis surgery, request copies of the operative report, pathology report and relevant imaging. These records can be extremely important if symptoms persist, fertility treatment is needed or another operation is considered. Keep them together in your personal health record.

GEM favors photographs and complete unedited operative video when feasible, consented and privacy-compliant. Recording is not universally required. Ask what is retained and how to request it. If a recording is in a HIPAA designated record set, access is governed by HIPAA and its exceptions, not simply by preference.

Before consenting, ask: What exactly do you expect to find? What will you treat? What might you leave untreated, and why? Could my ovary, fertility, bowel, bladder or ureter be affected? What happens if disease is more extensive than expected? Who will be available to help? A consent form should support a conversation – not replace one.

Privacy and dignity matter. Medicare/Medicaid-participating hospitals must protect patient rights. CMS's 2024 consent clarification addresses sensitive examinations by trainees, especially examinations outside the planned medically necessary procedure. Ask who will participate and what is specifically authorized.

If you believe your rights, privacy or quality of care have not been respected, start with the clinician, hospital patient-relations office or formal grievance process. Depending on the issue, state agencies, licensing boards, HHS civil-rights/privacy processes, Medicare or other federal programs may also provide avenues for complaints or appeals. Keep copies of relevant records and correspondence.