🎗️ Endometriosis Awareness

Know your symptoms.
Own your visit.

EndoPrompt is a free question-prompt list that helps you prepare for, communicate through, and advocate in your endometriosis appointment.

~10%of women & girls of reproductive age are affected1
7–10 yrsaverage diagnostic delay2
No blood testcan confirm it today3
Start the Form Endo in the News

The Problem

Why does diagnosis take so long?

Endometriosis affects roughly 1 in 10 women and girls of reproductive age, yet the average time from first symptoms to a confirmed diagnosis is commonly reported at 7 to 10 years. Closing that gap starts with better tools, clearer communication, and patients who feel empowered to ask the right questions.

15

Minutes per appointment

Providers have little time to take a full symptom history, especially one spanning years.

0

Diagnostic blood tests

There is no simple non-surgical test to confirm endometriosis, which makes clear symptom communication critical.

↑

Dismissal for marginalized patients

Patients of color and other marginalized groups face longer delays and higher rates of pain dismissal.

0

Existing QPLs for endometriosis

No structured Question Prompt List existed to help patients navigate early evaluation, until now.

7

Doctors before a diagnosis

Patients frequently see multiple providers, often cited as around seven, before endometriosis is finally identified.4

74%

First misdiagnosed

In one study, roughly 74% of patients were misdiagnosed first, commonly as IBS, appendicitis, or a pelvic infection.5

“I knew something was wrong for years. I just didn’t have the words, or the questions, to make anyone listen.”
A sentiment echoed across patient communities and stakeholder interviews

The Solution

What is EndoPrompt?

EndoPrompt is a free, equity-centered Question Prompt List (QPL)A structured list of questions patients can ask, shown to improve communication and shared decision-making. developed through stakeholder interviews, patient-community research, and implementation feedback from clinicians at Cedars-Sinai Medical Center.

It is a two-part tool, designed to be completed before your appointment and brought into the room with you.

Part A: Your Symptom History

Complete this before your visit. A symptom checklist organized by body system, a color-coded pain scale, cycle-pattern questions, daily-life impact, and your treatment history. Your provider can review it before you walk in the door.

Part B: Questions to Ask Your Provider

15 streamlined prompts across 4 clinical domains: understanding your symptoms, testing and diagnosis, treatment options, and next steps. Check the ones that matter most to you today.

Self-Advocacy Section

Because dismissal is real. EndoPrompt includes language to help you advocate for yourself if your concerns are minimized, because pelvic pain that disrupts your life is never something you have to accept as normal.

Endo in the News

What’s changing in endometriosis

Research, diagnostics, and advocacy moving the field forward, pulled from the awareness carousels we publish on @endoprompt. Tap any card to see the full story.

The Breakthrough

Non-invasive tests put the 9-year wait on notice

Health systems are beginning to roll out non-invasive endometriosis tests, including saliva and sensor-pad approaches, that aim to shrink years of diagnostic delay.

Diagnostics

Science Watch

A treatment aimed at endometriosis itself

A new non-hormonal drug candidate is advancing through trials, designed to target the disease process of endometriosis, not just mask the pain.

Treatment

Breaking Research

A scan that could end the 9-year diagnosis wait

Imaging researchers describe an ultrasound technique that may detect endometriosis without surgery, potentially cutting diagnosis time dramatically.

Diagnostics

Reproductive Wellness

What your period is trying to tell you

Heavy, painful, or irregular periods can be more than an inconvenience; they may point to endometriosis, and its links to infertility and early menopause.

Symptoms

New Research

Endo & your baby’s health

A landmark study of 1.4 million births links endometriosis to pregnancy and newborn outcomes, confirming what researchers long suspected, and what it means for you.

Pregnancy

These cards summarize awareness content from our TikTok and point to reporting and studies discussed there. They are for education and awareness, not medical advice. Always confirm details with a qualified clinician.

Follow @endoprompt for more

Learn

Understanding endometriosis

A little background can make your appointment more productive. These plain-language answers are for education only; they are not a diagnosis or medical advice.

Endometriosis is a chronic condition in which tissue similar to the lining of the uterus (the endometrium) grows in other places, often on the ovaries, fallopian tubes, and the tissue lining the pelvis. This tissue responds to hormones each cycle, which can cause inflammation, pain, scar tissue, and adhesions. It can affect anyone who has a uterus.1

  • Painful periods (cramping that may be severe)
  • Chronic pelvic pain, sometimes throughout the cycle, not only during periods
  • Pain during or after sex
  • Pain with bowel movements or urination, often worse around your period
  • Bloating, nausea, fatigue, and heavy or irregular bleeding
  • Difficulty getting pregnant

Symptom severity does not always match how much endometriosis is present, which is part of what makes it hard to recognize.3

There is no simple blood test for endometriosis. A provider starts with your symptom history and a pelvic exam, and may use ultrasound or MRI. Imaging can sometimes show cysts or deeper disease, but a normal scan does not rule endometriosis out. Historically, laparoscopy (keyhole surgery) has been the way to confirm it visually and treat it at the same time.3 This is exactly why a clear, written symptom history matters so much.

There is currently no cure, but symptoms can often be managed. Options a provider might discuss include pain-relieving medications (such as NSAIDs), hormonal therapies (birth control pills, hormonal IUDs, or other hormone treatments) to reduce cyclic activity, and surgery to remove endometriosis tissue. Care is individual: the right plan depends on your symptoms, goals, and whether fertility is a priority.3

Appointments are often short. Your provider will likely ask about your symptoms, cycle, and what you have already tried. Bringing a completed EndoPrompt helps you cover the important details quickly, makes sure nothing gets forgotten, and gives you a written record. It is reasonable to ask for your symptoms to be documented and to request a referral if needed.

Plain-language definitions for words and acronyms you may hear during your appointment or see on this form.

  • Ablation: a surgical method that burns or destroys endometriosis on the surface. (Compare with excision.)
  • Adenomyosis: a related condition where endometrial-like tissue grows into the muscular wall of the uterus, often causing heavy, painful periods; it can occur alongside endometriosis.
  • Adhesions: bands of scar-like tissue that can form and bind organs together.
  • Catamenial: happening with your menstrual cycle; for example, symptoms that flare around your period.
  • Chronic pelvic pain (CPP): pelvic pain that lasts six months or longer.
  • Deep infiltrating endometriosis (DIE): endometriosis that grows deeper below the surface, sometimes involving the bowel, bladder, or pelvic ligaments.
  • Dyschezia: pain with bowel movements.
  • Dysmenorrhea: painful periods or cramps.
  • Dyspareunia: pain during or after sex.
  • Dysuria: pain or burning when you urinate.
  • “Endo belly”: the intense bloating many people with endometriosis experience, which can make the abdomen swell noticeably.
  • Endometrioma: an ovarian cyst filled with old blood caused by endometriosis, sometimes called a “chocolate cyst.”
  • Endometriosis: a chronic condition where tissue similar to the uterine lining grows outside the uterus.
  • Endometrium: the normal lining of the uterus that sheds during your period.
  • Excision: surgery that cuts out endometriosis at its roots; often considered the gold-standard surgical approach.
  • GnRH agonist / antagonist: medications (such as leuprolide/Lupron, or oral elagolix/Orilissa) that lower estrogen to quiet endometriosis activity.
  • Hormonal therapy: treatments such as the pill, progestin-only options, the patch, the ring, or a hormonal IUD, used to reduce cyclic activity and pain.
  • Hysterectomy: surgery to remove the uterus; on its own it is not a guaranteed cure for endometriosis.
  • IBS (irritable bowel syndrome): a common gut condition that endometriosis is frequently mistaken for.
  • Interstitial cystitis / painful bladder syndrome (IC/PBS): a bladder-pain condition that often overlaps with endometriosis.
  • Laparoscopy: minimally invasive “keyhole” surgery used to look inside the pelvis and confirm or remove endometriosis.
  • Laparotomy: traditional open abdominal surgery, using a larger incision than laparoscopy.
  • NSAID: a non-steroidal anti-inflammatory drug (such as ibuprofen or naproxen) used for pain.
  • Oophorectomy: surgery to remove one or both ovaries.
  • Pelvic floor physical therapy (PT): therapy for the muscles that support the pelvis; it can help with pelvic pain and pain during sex.
  • QPL (Question Prompt List): a structured list of questions patients can ask, shown to improve communication and shared decision-making.
  • Retrograde menstruation: one theory of how endometriosis may develop, in which menstrual blood flows backward through the fallopian tubes.
  • Staging (Stages I to IV, rASRM): a system describing how much endometriosis is found; importantly, the stage does not always match how severe symptoms feel.
  • Transvaginal ultrasound (TVUS): an internal ultrasound that can spot some endometriosis (like endometriomas), though a normal scan does not rule it out.
This tool does not diagnose endometriosis and is not a substitute for medical care. EndoPrompt is an educational aid to help you organize your symptoms and questions. Your form answers are saved only in your own browser on this device and are never sent to us. We do count anonymous, non-identifying usage (such as page visits and how often the form is printed) to understand how the tool helps people, but never your symptoms or answers. If you have severe or sudden symptoms, seek medical care promptly.

The Tool

EndoPrompt 2.0
Patient-completed symptom history & question prompt list

EndoPrompt 2.0

Complete before your visit · Bring to your appointment · Share with your provider

Your answers save automatically on this device
Part A
Your Symptom History

Complete before your visit. Tap each section below to open it. Your provider will review this to better understand your experience.

Pregnancy plans (this can affect your options):

Check all that apply.

Good to know: providers often use clinical terms for these symptoms, such as dysmenorrheaPainful periods or cramps. (painful periods), dyspareuniaPain during or after sex. (pain with sex), dyscheziaPain with bowel movements. (painful bowel movements), and dysuriaPain or burning when you urinate. (painful urination). Tap a term for its meaning.

Pelvic Pain

Gastrointestinal Symptoms

Bladder & Urinary Symptoms

Other Symptoms

Your period history (these details help your provider spot patterns)

Typical flow:

Rate your typical pain at its worst (0–10):

0 = No pain10 = Worst pain imaginable

Over time, your pain has been:

Does your pain follow your menstrual cycle?

How does this affect your daily life? (Check all that apply)

Over-the-counter pain relief:

Hormonal treatments tried:

Has a close blood relative had endometriosis, or very painful periods? (Check all that apply)

Have you ever been told your symptoms were something else? (Check all that apply)

Part B
Questions to Ask Your Provider

You do not need to ask every question. Check the ones most important to you today.

B1 · Understanding My Symptoms

B2 · Testing & Diagnosis

B3 · Treatment Options

B4 · Next Steps & Follow-Up

You have the right to be heard.

If your symptoms are dismissed, it is appropriate to say: “Can you document my symptoms as part of my problem list?” or “I would like a referral to a specialist.” Pelvic pain that disrupts your daily life is not something you have to accept as normal. Advocacy is part of your care.

Resources: Endometriosis Foundation of America · WHO: Endometriosis · iCareBetter