Questions to Ask About Complex Symptoms or Multi-System Endometriosis

If your symptoms involve the bowel, bladder, ureters, chest, diaphragm, nerves, scars or more than one body system, it can help to prepare specific questions before appointments. Complex symptoms can be harder to explain in a short consultation. You may have pain in different places, symptoms that come and go, normal scans, mixed test results, or symptoms that have been treated separately without anyone looking at the full pattern. This guide is designed to help you ask clearer questions and leave the appointment with a better understanding of what happens next.

Start by explaining the full pattern

Before asking questions, briefly explain the pattern. You could say: “My symptoms involve more than one area, and I am worried they may be connected.” Or: “My bowel, bladder and pelvic symptoms flare around my cycle.” Or: “I get chest, shoulder or breathing symptoms around my period, and I want to understand whether this needs specialist review.” Or: “I have nerve-like pain, numbness or weakness that seems to flare with my cycle.” This helps move the conversation away from one isolated symptom and towards the whole picture.

Core questions to ask

You may want to ask:

• Could my symptoms suggest deep endometriosis?
• Could my symptoms suggest extra-pelvic endometriosis?
• Could more than one body system be involved?
• What information supports that possibility?
• What information argues against it?
• What else could explain these symptoms?
• What should the next step be?
• Should I be referred to a specialist endometriosis service?
• What should I do if symptoms worsen while I am waiting?

A useful question is: “What are we trying to rule in, rule out, or understand next?”

Questions about imaging

Imaging can be useful, especially when deep or organ-involving disease is suspected, but normal imaging does not always end the conversation. You may want to ask:

• What imaging is appropriate for my symptoms?
• Should I have specialist ultrasound or MRI?
• Who will interpret the imaging?
• Does the person reading the scan have endometriosis imaging experience?
• What can this scan show well?
• What can this scan miss?
• If the scan is normal, what happens next?
• Does a normal scan rule out superficial, deep or extra-pelvic endometriosis?
• Should previous scan images or reports be reviewed?

For bowel, bladder or ureter symptoms, ask whether imaging should specifically assess deep endometriosis and urinary tract involvement. For chest or diaphragm symptoms, ask whether chest, abdominal or diaphragm-focused assessment is needed. For nerve-like symptoms, ask whether imaging should consider pelvic nerves, spine, hips or other causes.

Questions about the care team

Complex symptoms may need more than one specialist. You may want to ask:

• Which specialist should review me first?
• Should colorectal surgery be involved for bowel symptoms?
• Should urology be involved for bladder, ureter or kidney drainage concerns?
• Should thoracic surgery or respiratory input be involved for chest, diaphragm or breathing symptoms?
• Should neurology, pain management or a nerve specialist be involved for nerve-like symptoms?
• Should pelvic physiotherapy be involved?
• Should fertility advice be included before treatment decisions?
• Who coordinates my care?
• How will different specialists communicate with each other?

A helpful question is: “If this involves more than one body system, who is responsible for joining the dots?”

Questions about surgery

If surgery is discussed, ask about the plan before you consent. You may want to ask:

• What is the aim of surgery: diagnosis, treatment or both?
• What areas will be assessed?
• Will bowel, bladder, ureters, diaphragm, pelvic sidewall and nerves be checked if my symptoms suggest this?
• Will lesions be excised, ablated or both?
• What happens if disease is more complex than expected?
• Are there areas you would not treat during this surgery?
• Would colorectal, urology, thoracic or other specialists be available if needed?
• Would surgery be stopped and replanned if unexpected complex disease is found?
• Will tissue be sent for histology?
• Will findings be documented with photos or a detailed operation report?
• What follow-up care will I have?

A key question is: “Is this surgery planned for the symptoms I actually have, or only for suspected pelvic disease?”

Questions about bowel symptoms

If you have bowel symptoms, ask:

• Could bowel endometriosis or adhesions be involved?
• Could pelvic floor dysfunction also be contributing?
• Would specialist ultrasound or MRI help assess bowel involvement?
• Should colorectal input be part of the plan?
• What should I do if I have rectal bleeding, severe constipation, vomiting or abdominal swelling?
• If bowel disease is found during surgery, what options would be considered?

Questions about bladder or ureter symptoms

If you have urinary symptoms, ask:

• Could bladder or ureter endometriosis be possible?
• Do I need urine testing, kidney imaging or urinary tract imaging?
• Should urology be involved?
• Could ureter involvement affect kidney drainage?
• What symptoms should make me seek urgent help?
• If surgery is planned, will the ureters be identified and protected?

Questions about chest, shoulder or breathing symptoms

If symptoms involve the chest, shoulder, ribs, diaphragm or breathing, ask:

• Could diaphragm or thoracic endometriosis be considered?
• Do I need chest imaging or diaphragm-focused imaging?
• Should thoracic surgery or respiratory input be involved?
• What should I do if I develop chest pain, shortness of breath or coughing blood?
• If symptoms are cyclical, how should that be documented?

Do not wait for a routine appointment if you have chest pain, shortness of breath, coughing blood or suspected collapsed lung.

Questions about nerve-like symptoms

If you have burning, shooting, electric, numb, tingling or radiating pain, ask:

• Could this be nerve-related pain?
• Could endometriosis, adhesions or inflammation be affecting a nerve?
• Could sciatic-type or pudendal-type pain be relevant?
• Should neurology, pain management or pelvic physiotherapy be involved?
• Would specialist MRI or other imaging help?
• What symptoms suggest urgent nerve assessment?

New leg weakness, foot drop, saddle numbness or new bladder or bowel control problems need urgent assessment.

Questions if you feel dismissed

If your symptoms are being separated or minimised, you can ask:

• Can we look at the full symptom pattern together?
• What diagnosis explains all of these symptoms?
• If this is not suspected endometriosis, what else are we considering?
• What would need to happen for referral to be appropriate?
• Can you record that these symptoms are affecting my daily life?
• Can I have a second opinion or specialist review?

You are allowed to ask for a clear plan.

Prepare before you speak with a healthcare professional

Use our Prepare for Appointment Tool to organise your symptoms, questions, concerns, previous treatments and priorities before your appointment. Try to record:

• where symptoms happen
• what symptoms feel like
• whether they follow your cycle
• whether bowel, bladder, chest, nerve, scar or fertility symptoms are present
• what tests or scans you have already had
• what has helped or not helped
• how symptoms affect daily life
• your top three questions

You do not need a perfect diary. A clear summary can help the conversation feel more focused.

Finding the right type of care

Use the Endometriosis Care Directory to explore different types of endometriosis-related care providers. The directory is for research and information only. It is not a recommendation, referral service, ranking or medical advice. Always check details directly with the provider and speak with an appropriate healthcare professional before making decisions about your care.

Final reminder

Complex symptoms deserve a joined-up conversation. If symptoms involve bowel, bladder, chest, diaphragm, nerves, scars or multiple body systems, it is reasonable to ask whether deep, extra-pelvic or multi-system endometriosis should be considered, what imaging or referral is appropriate, and which specialists should be involved. This resource is here to support your understanding, not replace medical advice from a qualified healthcare professional.