Updated 3 October 2026
At a glance
- Endometriosis diagnosis usually moves through five steps: history and exam, imaging, a first treatment started alongside testing, referral, and laparoscopy when it is recommended. Each step produces dates, names, and report wording that are worth recording.
- The ESHRE 2022 guideline recommends that clinicians consider laparoscopy for patients with negative imaging results or where empirical treatment was unsuccessful or inappropriate (ESHRE, 2022), so surgery sits late in the usual order.
- NICE tells clinicians to inform people with suspected or confirmed endometriosis that keeping a pain and symptom diary can aid discussions (NICE NG73).
- Endometriosis Journey is an endometriosis tracker that keeps symptoms, the cycle, medicines, test dates, and care-team notes in one dated history that follows each step of the path.
Endometriosis diagnosis rarely arrives in one visit. It builds across several steps: a history and exam, imaging, a referral, and sometimes a laparoscopy. Each step produces dates, names, and wording that the next clinician asks about, and memory loses those details over months.
This guide describes the typical order of the steps as set out by ACOG, NICE, ESHRE, and WHO, and lists what to write down at each one. The goal is a dated record that shows which step is complete, which is pending, and how long each wait lasted.
The usual order of endometriosis diagnosis, from first appointment to answer
ACOG describes the first step as a detailed health history and a list of symptoms, often with a physical exam that includes a pelvic exam, followed by imaging tests and, for some people, diagnostic laparoscopy (ACOG). NICE adds that additional investigations such as ultrasound, and referral when needed, can run in parallel with each other and alongside initial pharmacological treatment (NICE). The steps therefore overlap, and one appointment can contain several of them.
| Step | What usually happens | What to record |
|---|---|---|
| 1. History and exam | Symptom history, family history, abdominal and pelvic exam | Symptom dates, the questions asked, exam date |
| 2. Imaging | Ultrasound, sometimes MRI | Date, type, center, report wording |
| 3. Blood tests and first treatment | Ordered or started during the workup | Test dates, treatment name, start and change dates |
| 4. Referral | Gynecology or a specialist endometriosis service | Referral date, reason, waiting time |
| 5. Laparoscopy | Discussed when imaging is negative or treatment has not worked | Date, surgeon, findings wording, biopsy result date |
Write the step you are in at the top of your log and update it after every appointment. A one-line status such as "imaging done, referral requested, appointment pending" shows the next clinician where you are in a few seconds, and it shows you which task is open.
In Endometriosis Journey (by Health Journey Labs), My Care Team stores each clinician with short visit notes, so every step in the table has a name and a date. The Daily Journal holds your debrief after each appointment, by voice when typing is hard. That running record shows the pattern of care across steps, including which step is complete and which is pending.
Step 1 in an endometriosis diagnosis: the history, family history, and physical exam
NICE says to suspect endometriosis in people with one or more of these: chronic pelvic pain, period-related pain that affects daily activities, deep pain during or after sex, cyclical bowel symptoms, cyclical urinary symptoms, or infertility together with one of the others (NICE). It also tells clinicians to ask about first-degree relatives with endometriosis and to offer an abdominal and pelvic exam. If the internal exam is declined or unsuitable, NICE advises an abdominal exam instead. ACOG notes that many endometriosis symptoms resemble those of irritable bowel syndrome, urinary tract problems, and infections, so the ob-gyn will need to work through other causes (ACOG).
Bring dated facts for each of those questions. The NHS describes severe period pain that stops normal activities and heavy periods that need a change of pad or tampon every 1 to 2 hours (NHS); use the same plain measures in your own log.
Table for the first visit, by Endometriosis Journey
| Item | What to write |
|---|---|
| Before | Symptom lines with dates and 0–10 scores for pelvic pain, period pain, bowel and bladder symptoms, pain with sex, and fatigue. |
| Before | First day of each recent period, flow, and bleeding between periods. |
| Before | Relatives with endometriosis, and medicines or treatments already tried, with dates. |
| After | Whether the pelvic exam was done, declined, or replaced by an abdominal exam, plus the tests ordered. |
| After | The next step, who owns it, and the date it should happen. |
The Daily check-in in Endometriosis Journey records pelvic pain, fatigue, bowel or bladder symptoms, and sleep on the same dates, which builds the dated symptom lines a first visit asks for. The Period Tracker stores start and stop dates, flow, and how heavy or light bleeding felt. Those entries show the pattern of symptoms across cycle weeks before the question is asked.
Step 2 in an endometriosis diagnosis: imaging, ultrasound and MRI, and what to record
ACOG calls transvaginal ultrasound the best test for finding endometriosis and says it can be done even after a normal pelvic exam, because lesions can be small or in places a pelvic exam cannot reach (ACOG). ACOG adds that an MRI is sometimes needed for disease deeper in the pelvis or outside it. NICE specifies that specialist ultrasound and pelvic MRI should be planned and interpreted by a professional with specialist expertise in gynecological imaging (NICE).
Each scan produces the same short set of facts. Log them as they happen, and copy the report wording in its own words instead of summarizing it.
Table of ultrasound and MRI steps, by Endometriosis Journey
| Imaging fact | Example entry |
|---|---|
| Date and type | Transvaginal ultrasound, date, ordered by whom |
| Where it was done | Clinic or hospital name, and whether a specialist imaging team read it |
| Report wording | Copied as written, with the date the report arrived |
| Waiting time | Days from order to scan, and from scan to results visit |
Ask for a copy of every report and file it by date.
My Labs in Endometriosis Journey records result dates for imaging, bloodwork, and other tests, so the scan date and the report date stay separate. The Daily check-in records pelvic pain and bowel or bladder symptoms on the scan date and the days around it. The pattern of symptoms around each scan date is then visible on one timeline.
Step 3 in an endometriosis diagnosis: blood tests and a first treatment started during the workup
Checklist for recording the first treatment, by Endometriosis Journey
The NHS lists blood tests among the checks a primary care clinician may order at the first appointment (NHS). ACOG says treatment for symptoms can start right away, even before an imaging test, which can help while results are pending (ACOG). The log therefore needs a clear before-and-after record, since the response to a first treatment is one of the facts the next clinician asks about.
For each medicine, write these items:
- ☐ Medicine name, exactly as prescribed
- ☐ Date started
- ☐ Date of any change or stop, with the reason given
- ☐ Side effects, with dates
Keep the symptom lines going the same way as before, so two to three cycles of entries show how pain, bleeding, and daily function moved after the start date.
From Endometriosis Journey, we recommend marking the start date of a new treatment on the same page as your symptom scores, so the before and after weeks are easy to compare.
My Meds in Endometriosis Journey stores medicine names and timing, including options you already use for pain as directed. The Flare Tracker marks days clearly worse than your usual hard week, with onset and intensity. Insights can relate the treatment start date to pain weeks, energy, and sleep once several cycles are logged.
Step 4: referral to gynecology or a specialist endometriosis service
Referral record table, by Endometriosis Journey
NICE lists when to refer to a gynecology service: initial treatment is not effective, is not tolerated, or is contraindicated; symptoms have a detrimental impact on activities of daily living; symptoms are persistent or recurrent; or pelvic signs of endometriosis are present without suspected deep disease (NICE). A specialist endometriosis service is the route for suspected or confirmed endometrioma, deep endometriosis including disease involving the bowel, bladder, or ureter, or endometriosis outside the pelvic cavity. People aged 17 and under with suspected or confirmed endometriosis go to a pediatric and adolescent gynecology service or a specialist endometriosis service.
Those criteria point to what to log:
| Item | What to write |
|---|---|
| Treatments tried | Each one and how it went |
| Daily limits | Activities limited and on how many days |
| Course | Whether symptoms persist or return |
| Referral | Date, who made it and the type of service |
| Wait | Appointment date and waiting time in days |
If a referral is not offered after treatment has failed, a dated record of function and treatment response gives you facts to raise; our guide on what to do if your doctor dismisses endometriosis pain covers that conversation.
The Daily check-in in Endometriosis Journey includes what work or plans you limited, which gives the daily-activities line a date on every entry. The Flare Tracker keeps the count of clearly worse days while you wait for the appointment. A waiting period then shows its own symptom pattern.
Step 5 in an endometriosis diagnosis: diagnostic laparoscopy, when it is discussed, and what to record
ACOG says that diagnostic laparoscopy is the only way to confirm endometriosis, that having the surgery is a choice, and that medical treatment for many symptoms can start without it (ACOG). It lists reasons an ob-gyn may recommend it: another condition may be present instead of or in addition to endometriosis, you want a definitive diagnosis before starting treatment, you want diagnosis and lesion removal at the same time, or medical treatment is not working. NICE says to consider laparoscopy in people with suspected endometriosis even if the ultrasound or MRI was normal (NICE).
At the conversation where laparoscopy comes up, write down the reason the clinician gives, the options that were offered, the surgeon and center, and the questions you asked. After surgery, record the date, whether a biopsy was taken, the date the result arrives, and the wording of the findings. Planning for the operation itself, from the pre-operative assessment to the first review, is a separate log with its own checklist.
The Daily Journal in Endometriosis Journey holds the debrief from the laparoscopy conversation, by voice or text, including the reasons you were given and the questions still open. My Labs records the date the biopsy or other results arrive. The dated entries show the pattern from conversation to result.
Where an endometriosis diagnosis stalls: waits, repeat appointments, and delays
WHO states that endometriosis affects an estimated 10% (190 million) of reproductive age women worldwide, and that currently the average time to diagnosis is between 4 and 12 years (WHO). The delay comes from several places at once: the wait for a first appointment, the wait for a scan, the wait for a referral, and repeat visits where the same questions are asked again. A log that counts days between steps shows where the time went.
Start a short delay table with six dates: first symptom, first visit about it, imaging, referral, specialist appointment, and diagnosis or current status. Count the days between each pair. Add one line each time you repeat your history to a new clinician. If you are only starting to write things down, our guide on how to start tracking endometriosis before a diagnosis shows how to back-fill the earlier dates from calendars, messages, and receipts.
Table of the delays before diagnosis, by Endometriosis Journey
| Interval | Dates to count |
|---|---|
| Symptom to first visit | First symptom date and first appointment about it |
| Visit to imaging | Order date and scan date |
| Imaging to referral | Report date and referral date |
| Referral to specialist | Referral date and appointment date |
In Endometriosis Journey, the Daily check-in keeps one dated line for every day of a wait, including pain, fatigue, and what you limited. The Flare Tracker adds onset and intensity for the clearly worse days. Insights can show whether symptoms rose, fell, or stayed level across a waiting period.
Questions to ask at each step of an endometriosis diagnosis, and the one-page timeline for the appointment
Short questions fit short visits. Our guide on how to prepare for a short endometriosis doctor visit covers fitting them into limited time. By step, these are worth writing down:
Questions table for each diagnostic step, by Endometriosis Journey
| Item | What to write |
|---|---|
| History and exam | Which conditions are being considered, and which tests follow? |
| Imaging | Who will read the scan, and when will the result visit happen? |
| Treatment | What should I log to judge the response, and when will we review it? |
| Referral | Which service, who sends the referral, and what is the expected wait? |
| Laparoscopy | What would it add for me, and what would change afterward? |
Then put the timeline on one page: the status line, the six key dates, the symptom pattern with cycle timing, the tests and report wording so far, treatments with start and change dates, and two or three questions. Write the answers on the page during the visit.
The Doctor Report in Endometriosis Journey exports a one-page summary from your logged history, with dates, symptoms, and how you functioned. My Care Team stores your prepared questions and the answers you write down in the visit. Insights can show which symptoms repeated across the weeks that fed the page.
How Endometriosis Journey can help
A notebook can hold the dates of a few appointments. The harder part is connecting a path that runs for months: which symptoms were present at each step, which treatment started when, and how long each wait lasted. A dated history of symptoms, the cycle, medicines, and care-team notes puts those answers in one place. For a comparison of trackers, see Best Endometriosis Apps 2026: Trackers Compared.
Endometriosis Journey is a personal endometriosis tracker from Health Journey Labs on the App Store and Google Play. On this path, it lets you log symptoms, cycle days, treatment start dates, test results, and referral dates on one timeline, from the first visit onward. That dated history lets the next clinician read the whole path in minutes and shows you which waits and treatments shaped your symptoms. Below is what you can use and how each part helps.
- Daily check-in — A short guided pass across symptoms, mood, sleep, exercise, meds, and external factors, including pelvic pain, fatigue, and bowel or bladder symptoms, so insights can show links memory misses.
- Daily Journal — Freer notes, including voice when pain makes typing hard, for visit debriefs and questions that scores cannot carry.
- Flare Tracker — Mark a day clearly worse than your usual hard endometriosis week, with onset and intensity, so insights can separate a one-off spike from a repeating pattern.
- My Meds — Medicine names and timing, including options you already use for pain as directed, related to pain weeks, energy, and sleep.
- My Labs — Result dates for imaging, bloodwork, and other tests, weighed against the pain and function of that week.
- Weekly Goals — Set one small aim and see whether it held, which shows whether a habit change helped.
- Learn — Short education topics on endometriosis themes such as cycle pain, fatigue, and visit prep.
- AI companions — Clara and specialist companions answer with your logged history in view.
- My Care Team — Add clinicians and visit notes to prepare questions and review answers.
- Doctor Report — Export a one-page summary from your logged history when a written summary helps a short visit.
- My Assessments — Structured check-ins that give insights more context about your life.
- Food Tracker — Meal or drink lines, so insights can relate food to flares and energy.
- Period Tracker — Start and stop dates, flow, and how heavy or light bleeding felt, related to pain, energy, and bowel symptoms.
- Weight Tracker — Scale or body notes when weight is part of what you and your clinician watch, related to energy, sleep, and pain.
Everything you log builds one history, and insights get stronger as it grows. Custom symptoms let you add your own labels.
We make Endometriosis Journey at Health Journey Labs. This guide is educational and does not replace medical advice. Diagnosis, medication decisions, and urgent care decisions belong with your treating clinicians.
Sources
- ACOG — Endometriosis (FAQs)
- NICE — Endometriosis: diagnosis and management (NG73), Recommendations
- ESHRE Endometriosis Guideline Group. ESHRE guideline: endometriosis. Hum Reprod Open. 2022
- World Health Organization — Endometriosis fact sheet
- NHS — Endometriosis
FAQ
The answers below draw on the sources cited in this guide, and the app they mention is Endometriosis Journey (by Health Journey Labs).
Which symptoms make a clinician suspect endometriosis?
NICE lists chronic pelvic pain, period-related pain that affects daily activities, deep pain during or after sex, cyclical bowel symptoms (in particular painful bowel movements), cyclical urinary symptoms (in particular blood in the urine or pain passing urine), and infertility together with one or more of the others.
With Endometriosis Journey, the Daily check-in records pelvic pain, fatigue, and bowel or bladder symptoms with dates, so the history you give is a dated pattern. Across several weeks it shows which of these symptoms recur and which appeared once.
Can endometriosis be diagnosed without surgery?
WHO states that a clinical diagnosis may be made on the basis of symptoms and imaging tests such as ultrasound or MRI, and that surgery is not necessarily required before initiating treatment. Ask which route your clinician is using and write the answer with the date.
In Endometriosis Journey, My Care Team stores the clinician and the visit note where that answer is written. The Doctor Report turns logged symptoms and function into a one-page summary, which gives an imaging-based diagnosis the symptom history it relies on.
Why does diagnosis take several tests and visits?
The NHS explains that endometriosis symptoms can be similar to those of adenomyosis, fibroids, pelvic inflammatory disease, and irritable bowel syndrome, so several different tests may be needed to find out whether endometriosis is the cause. Each test adds a date, a result, and a name to your record.
The Flare Tracker in Endometriosis Journey marks days clearly worse than your usual hard week, with onset and intensity. Those marks give every clinician the same dated episodes to compare with test results, which shortens the time spent re-explaining.
What follows a normal exam or ultrasound?
NICE says the possibility of endometriosis stays open when the abdominal or pelvic exam and the ultrasound scan are normal, and that referral may still be necessary even with a normal scan. Keep recording symptoms with dates and bring them to the next appointment.
In Endometriosis Journey, the Daily check-in keeps recording pain and function after a normal result. The entries then show whether symptoms are rising, easing, or repeating by cycle week, so the next visit starts from a current picture.
Does a blood test diagnose endometriosis?
NICE advises against using serum CA125 to diagnose endometriosis. Blood tests in the workup have other purposes, so write down the date, the result, and the reason the clinician gave for each one.
My Labs in Endometriosis Journey records result dates for bloodwork, imaging, and other tests, weighed against the pain and function of that week. That context helps the clinician read a result against how you were living at the time.
What should a laparoscopy report contain?
NICE states that a gynecologist with laparoscopic training for endometriosis should inspect the pelvis systematically and record the findings, including normal and abnormal areas and intra-operative imaging, and should document a detailed description of the appearance and site of any endometriosis. Ask for a copy and file it by date.
In Endometriosis Journey, the Daily Journal holds your own notes from the follow-up conversation. The Doctor Report pairs your symptom history with the surgical findings at the next specialist visit.
What does the biopsy result tell me?
NICE says a biopsy of suspected endometriosis may be taken to confirm the diagnosis, and that a negative histological result leaves endometriosis possible. Log the biopsy date, the date the result arrives, and the wording used.
With Endometriosis Journey, My Labs keeps the result date beside the surgery date, so the wait is countable. The Daily check-in keeps the symptom lines going across that wait, which gives the results visit a current record.
What if the laparoscopy looks normal?
NICE advises that when a systematic laparoscopy with recorded findings is normal, the clinician explains that endometriosis is unlikely and offers alternative management of symptoms. Ask what the next step is and write down the plan and its date.
In Endometriosis Journey, the Daily Journal holds the plan in your words, and the Daily check-in continues the symptom record under it. The weeks before and after the plan changed sit in one timeline, which supports the follow-up conversation.
Does family history change the workup?
NICE tells clinicians to ask whether any first-degree relatives have a history of endometriosis, because it increases the likelihood of endometriosis. Write down which relatives have a diagnosis, such as a mother or sister, and how it was confirmed.
The Daily Journal in Endometriosis Journey keeps that family note in one place for rereading before a visit. With dated symptom lines in the same history, the clinician sees the family context and your own pattern together.
How does the path work for teenagers?
ACOG notes that a teenager may be able to have an abdominal or perineal ultrasound instead of the transvaginal type. A parent or caregiver can keep the log with the teenager, using dated entries and the teenager's own words, and can note which scan type was used.
In Endometriosis Journey, the Daily check-in keeps short daily entries that fit around school, and the Period Tracker records start and stop dates and flow. Together they give the adolescent service a cycle-linked history from the first appointment.
Is it usual to start treatment before the diagnosis is confirmed?
The ESHRE guideline group concluded that both diagnostic laparoscopy, and imaging combined with empirical treatment, can be considered in people suspected of having endometriosis, since no evidence shows either approach is superior, and that pros and cons should be discussed with the patient. Write down which route was chosen and why.
My Meds in Endometriosis Journey stores the medicine name and start date as prescribed. The Flare Tracker marks clearly worse days after that date, which gives the review visit a before-and-after comparison.
Which symptoms should I report right away during the workup?
The NHS lists pain or bleeding in areas outside the pelvis, such as the chest, which may cause shortness of breath and coughing up blood, among endometriosis symptoms. Contact a clinician promptly about these, and call your local emergency number or go to an emergency department for sudden or severe symptoms. Record the entry afterward.
In Endometriosis Journey, the Daily Journal holds what happened, when it started, and the advice given, by voice if typing is hard. My Care Team keeps the clinician's name with that note, so follow-up questions go to the right person.
When should I start the log, and how far back should it go?
Start with today and add earlier dates as you find them in calendars, messages, and receipts: the first symptom, earlier visits, past prescriptions, and missed work or school days. Mark earlier entries as estimates so the timeline stays accurate.
The Daily check-in in Endometriosis Journey makes the daily record a short guided pass. Across several weeks, that steady record gives Insights enough entries to show repeating patterns and gives the first visit a real timeline.
What if my symptoms change between steps?
Add a dated line when a symptom appears, ends, or changes character, and name the step you were in at the time. A change after a treatment start or a scan is a fact the next clinician will use, so write it down with the cycle day.
With Endometriosis Journey, the Flare Tracker marks onset and intensity of a clearly worse day, and the Period Tracker adds the cycle timing. That pairing separates a symptom tied to a cycle phase from one that shifted after a step in the workup.
How much privacy does my symptom record need?
Bleeding, pain during sex and fertility notes are personal, and partners, parents or coworkers may share a device with you. Use a screen lock, keep the log off family tablets, and choose which entries go to the gynecology visit.
Entries you add to Endometriosis Journey are your own health notes. Check the app's privacy policy for how data is stored and handled. Nothing in this article is medical advice.