Updated 3 October 2026
At a glance
- A deep endometriosis log records symptoms by area (pelvis, bowel, bladder, sex, energy), the cycle day of each entry, and the facts of each visit. Where lesions sit is for imaging and surgery to describe, and the log supplies the dated symptom picture.
- An ESGE, ESHRE, and WES working group wrote that symptoms that could indicate deep endometriosis lesions in specific organs include cyclical hematuria and cyclical rectal bleeding (ESGE-ESHRE-WES, 2020), so those details deserve exact dates.
- The same paper states that the correlation between location and depth of endometriotic lesions and pain location is poor, so symptoms alone cannot map the disease (ESGE-ESHRE-WES, 2020).
- Endometriosis Journey is an endometriosis tracker that keeps pelvic pain, bowel and bladder symptoms, the cycle, and care-team notes in one dated history that a specialist team can read.
Deep endometriosis is a term clinicians use for disease that reaches into structures such as the bowel, bladder, or ureter. When it is suspected, the questions at appointments get more specific: which symptoms come with the cycle, which involve the bowel or bladder, and what has already been tested or said. Memory rarely holds those details across months.
This guide covers what to log: symptoms by area, cycle timing, pain with sex and daily function, warning signs, visit details, and the team involved. It does not interpret scans or stage disease. Those belong with your specialist clinicians.
What a log for deep endometriosis covers, and what it leaves to your specialists
ESHRE describes endometriosis as often subdivided by the type and location of lesions into peritoneal endometriosis, deep endometriosis, and endometrioma (ESHRE, 2022). NICE refers people with suspected or confirmed deep endometriosis, including disease involving the bowel, bladder, or ureter, to a specialist endometriosis service (NICE). Naming and locating the lesions is that service's job, using examination, imaging, and sometimes surgery.
Your part is the symptom record. The ESGE-ESHRE-WES working group wrote that the correlation between location and depth of lesions and pain location is poor (ESGE-ESHRE-WES), so a pain in one place does not tell you where the disease is. ESHRE's guideline group concluded that no evidence shows a symptom diary or app reduces time to diagnosis, but that diaries may complement history taking by aiding objectivity and helping people demonstrate their symptoms (ESHRE). Treat the log as supporting evidence for the conversation, not as a map.
| You log | Your clinicians determine |
|---|---|
| Where it hurts, when, and how bad | Where lesions are, from examination and imaging |
| Bowel, bladder, and sex symptoms with cycle day | Which organs are involved and how deeply |
| Dates, names, and wording from each visit | Which tests and treatments fit your situation |
In Endometriosis Journey (by Health Journey Labs), the Daily check-in covers pelvic pain, fatigue, bowel and bladder symptoms, sleep, mood, and medications in one guided pass. Custom symptoms let you add a label for a pain that does not fit the standard questions. Insights can show which symptoms came back across the weeks you logged.
Deep endometriosis symptoms to log by area: pelvis, bowel, bladder, and beyond
ESHRE lists cyclical and non-cyclical signs and symptoms that clinicians should consider when thinking about endometriosis: dysmenorrhea, deep dyspareunia, dysuria, dyschezia, painful rectal bleeding or hematuria, shoulder tip pain, cyclical cough or chest pain, cyclical scar swelling and pain, fatigue, and infertility (ESHRE). NICE similarly lists period-related or cyclical gastrointestinal symptoms, in particular painful bowel movements, and period-related or cyclical urinary symptoms, in particular blood in the urine or pain passing urine (NICE). The NHS lists pain when you poo or pee and pain during or after sex (NHS).
Use plain words for each area and give every entry a date and a 0–10 score. From Endometriosis Journey, we recommend one short line per area per day, written even when the answer is none, because quiet days show how the loud ones differ.
Symptoms by body area
Endometriosis Journey groups symptoms by the body area they affect.
| Area | What to write |
|---|---|
| Pelvis and back | Location, 0–10 severity, type word, and whether it spreads to a leg or hip |
| Bowel | Pain with bowel movements, constipation or diarrhea, any blood, and the cycle day |
| Bladder | Pain passing urine, urgency, frequency, any blood, and the cycle day |
| Sex | Pain during or after, deep or shallow, 0–10, or sex avoided |
| Beyond the pelvis | Shoulder pain, chest symptoms, or pain at a scar, with dates |
| Energy | Fatigue 0–10 and sleep hours |
In Endometriosis Journey, the Daily check-in asks about bowel or bladder symptoms, fatigue, and sleep on the same dates as pelvic pain. The Daily Journal supports voice notes for details a score cannot hold. Insights can relate bowel and bladder entries to pain weeks.
Cycle timing with deep endometriosis: log the cycle day with every entry
Cycle timing checklist for every entry, by Endometriosis Journey
Both NICE and ESHRE separate cyclical from non-cyclical symptoms (NICE; ESHRE), and the working group wrote that symptoms should be assessed taking into account uterine bleeding pattern and associated dysmenorrhea (ESGE-ESHRE-WES). A symptom that always arrives in the same part of the cycle reads differently from one that appears at random, and only dated entries can show which is true for you.
Record these items alongside every symptom line, so the pattern appears without extra work:
- ☐ First and last day of each period
- ☐ Flow
- ☐ Cycle day
- ☐ Bleeding between periods and the days around ovulation
- ☐ Any change in your usual pattern
If you use hormonal treatment, write its start and change dates as prescribed so a clinician can read symptoms against them. Mark blank days too, since a gap can mean a good day or a day you could not log. Over two or three cycles, you will see whether bowel and bladder symptoms track the cycle or run through it.
In Endometriosis Journey, the Period Tracker covers start and stop dates, flow, and how heavy or light bleeding felt. The My Meds tracker stores medicine names and timing, including options you already use for pain as directed. Insights can relate cycle timing to pain, energy, and bowel symptoms.
Pain with sex, movement, and daily function in deep endometriosis
Deep pain and daily function
Endometriosis Journey reviewed ESHRE and NICE symptom lists for this checklist.
ESHRE lists deep dyspareunia among the symptoms to consider (ESHRE), and NICE lists deep pain during or after sexual intercourse (NICE). Our guide on why endometriosis pain during sex happens and what to track covers that topic in depth. For this log, keep it to a few facts:
- ☐ Pain present or absent
- ☐ Depth of the pain
- ☐ The 0–10 score
- ☐ Lingering pain afterward
- ☐ Any change you made
Add function lines beside pain: sitting, walking, standing, stairs, exercise, work or school, sleep, and plans changed. These show impact in a way a score cannot. A clinician reading that you left work early on two cycle days has a clearer sense of severity than from a number. Record only what you are comfortable sharing, and ask your clinician how much detail they need; the log works with a few words per day. If a topic feels hard to write down, a single word such as avoided or painful still gives the date.
In Endometriosis Journey, the Daily check-in includes pain, fatigue, mood, and sleep so function sits in the same entry. The Flare Tracker marks onset, intensity, and a note for a day clearly worse than your usual hard week. Insights can separate a one-off spike from a repeating pattern.
Blood and other warning signs with deep endometriosis that need a clinician now
Blood in urine or stool
Endometriosis Journey treats this as a sign to seek care first and log second.
A log is for recording after you have sought care. The NHS says that if you think you have blood in your pee, you need to get it checked, even if there is only a small amount or you are not sure it is blood, and that you should seek urgent medical advice (NHS). It adds that you should not self-diagnose. The same logic applies to blood in your stool: report it rather than waiting to see whether it follows the cycle.
The working group notes that cyclical hematuria and cyclical rectal bleeding are symptoms that could indicate deep endometriosis lesions in specific organs (ESGE-ESHRE-WES), which is why a clinician will want exact dates, but only a clinician can sort cyclical bleeding from other causes. Write the entry afterward:
- ☐ Date and cycle day
- ☐ Color and amount
- ☐ Action taken
- ☐ Advice given
For severe pain, fainting, fever, or heavy bleeding, seek urgent care first.
After you have been seen, the Daily Journal in Endometriosis Journey can hold what happened, when it started, and what you were told, by voice or text. My Care Team stores clinicians and visit notes, so the follow-up plan stays with the right name. Insights can show whether similar episodes appeared earlier in your history.
Appointment details to log for deep endometriosis: who, when, what was done, and what was said
Visit details for the next clinician
Endometriosis Journey keeps the facts from each visit for the next one.
Every visit adds facts that the next clinician needs. NICE recommends a transvaginal ultrasound scan for people with suspected endometriosis and says to consider a specialist transvaginal ultrasound scan or pelvic MRI scan to diagnose deep endometriosis and assess its extent, planned and interpreted by a professional with specialist expertise in gynecological imaging (NICE). You do not need to read those scans. Copy what the report says, in its words, with the date and the center.
For each visit, log these items:
- ☐ Date, clinician and specialty
- ☐ Reason for the visit
- ☐ Examination done or not
- ☐ Tests ordered, with dates
- ☐ Referrals made
- ☐ Questions asked and the answers
- ☐ Next steps and any follow-up date
Include waiting times between referral and appointment, since delay is part of the story. If a clinician uses a term you did not follow, write it down as you heard it and ask for it to be explained. Keep a copy of reports in one folder so the dates match your symptom log.
In Endometriosis Journey, My Care Team stores clinicians and visit notes, so you can prepare what to ask and review answers afterward. My Labs records result dates for imaging, bloodwork, and other tests. The Doctor Report exports a one-page summary from your logged history for a short visit. Insights can place visit dates beside symptom weeks.
The deep endometriosis specialist team: who is involved and what each person said
Table of the specialist team, by Endometriosis Journey
NICE describes specialist endometriosis services as having access to gynecologists with advanced laparoscopic surgical skills, a colorectal surgeon and a urologist with an interest in endometriosis, an endometriosis specialist nurse, a pain service, and specialist imaging (NICE). The working group adds that a multidisciplinary team meeting before surgery may be helpful, and that fertility plans and indications for surgery should be discussed before the procedure (ESGE-ESHRE-WES).
That means your care may involve several people over months, and each one hears a slightly different part of the story. Keep one table:
| Column | What to write |
|---|---|
| Name and specialty | As on the letter |
| Hospital | Where they work |
| Contact dates | First and last |
| Examined or ordered | Tests and examinations |
| Recommended | In their words |
Add a line for open questions between teams, such as who will coordinate the next step. If fertility matters to you, say so at the first specialist visit and write the answer down; our guide on endometriosis infertility questions covers that conversation.
In Endometriosis Journey, My Care Team lets you add each clinician with short visit notes, so a gynecologist, surgeon, and nurse sit in one list. The Daily Journal holds what each person said in your own words. Insights can show how your symptoms moved between contacts.
One page about deep endometriosis for the appointment: symptoms, timing, and questions
A one-page specialist visit summary
Endometriosis Journey fits the summary onto one page.
A specialist visit is short, so bring one page. Put these in order:
- The start date of your symptoms and the current stretch.
- Symptoms by area, with cycle timing.
- Pain with sex, and function.
- Any blood, with dates.
- Tests and reports so far.
- Treatments tried, with dates.
- Two or three questions.
Our guide on how to prepare for a short endometriosis doctor visit shows how to fit it into limited time.
Questions can stay simple: which tests would help clarify what is happening, who coordinates the next step, what to log between now and the next visit, and which changes should prompt an earlier call. Write the answers on the page. If you bring older reports, label them with dates. Leave interpretation to the clinician: a page that says what you noticed, when, and in which cycle phase is stronger than one that guesses a cause.
In Endometriosis Journey, the Doctor Report exports a one-page summary from your logged history, with dates, pelvic pain, cycle timing, and daily function. My Care Team keeps your questions and the answers. Insights can show which symptoms repeated across the weeks you logged.
How Endometriosis Journey can help
A notebook can hold a few weeks of entries. The harder step is relating bowel, bladder, pelvic, and sex symptoms to cycle days and visits across months, and seeing which details a specialist team asked about repeatedly. A dated history that already holds symptoms, the cycle, medications, and care-team notes makes that comparison faster. 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 angle, it lets you log symptoms by area, cycle day, and visit details on one timeline, from the first referral onward. That dated history gives your specialist team a steady record and gives you a clear page to bring. Below is what you can use and how each part helps.
- Daily check-in — A short guided pass across physical symptoms, emotional state, nutrition, sleep, exercise, meds, and external factors, so insights can show links memory misses.
- Daily Journal — Freer notes, including voice when pain makes typing hard, that give insights context scores cannot carry.
- Flare Tracker — Mark a day clearly worse than your usual hard endometriosis week, 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, or 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, pacing, 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
- NICE — Endometriosis: diagnosis and management (NG73), Recommendations
- ESHRE Endometriosis Guideline Group. ESHRE guideline: endometriosis. Hum Reprod Open. 2022
- Working group of ESGE, ESHRE, and WES. Recommendations for the surgical treatment of endometriosis. Part 2: deep endometriosis. Hum Reprod Open. 2020
- NHS — Endometriosis
- NHS — Blood in urine
FAQ
The answers below draw on the sources cited in this guide, and the app they mention is Endometriosis Journey (by Health Journey Labs).
What is deep endometriosis?
Clinicians use the term for endometriosis that involves deeper structures. NICE refers to deep endometriosis including disease involving the bowel, bladder, or ureter, and ESHRE describes subdivision into peritoneal endometriosis, deep endometriosis, and endometrioma. Only imaging, examination, or surgery can show whether it applies to you.
In Endometriosis Journey, the Daily check-in keeps your symptoms dated, and My Care Team stores the clinicians involved. Insights can show which symptoms repeated across weeks, which supports the conversation.
Can my symptoms show where the lesions are?
Not reliably. The ESGE-ESHRE-WES working group wrote that the correlation between location and depth of lesions and pain location is poor. Log where it hurts, when it started, and how long it lasted, then let imaging and examination answer the location question for your specialist team.
The Daily check-in in Endometriosis Journey records pelvic pain, bowel and bladder symptoms, fatigue, and sleep on the same dates. Insights can relate those lines to the cycle across several months of entries.
What do I log for bowel and bladder symptoms?
Log pain with bowel movements, constipation or diarrhea, pain passing urine, urgency, any blood, and the cycle day, each with a 0–10 score. NICE lists painful bowel movements and blood in the urine or pain passing urine as period-related or cyclical symptoms to note.
With Endometriosis Journey, the Daily check-in asks about bowel or bladder symptoms, and custom symptoms let you add your own labels. Insights can show whether they cluster around the cycle.
What does cyclical mean when I log?
Cyclical means tied to the menstrual cycle. Writing the cycle day beside each entry shows whether a symptom comes in the same phase each month, or whether it runs through the month. A few cycles of entries are enough to see a first pattern.
The Period Tracker in Endometriosis Journey keeps start and stop dates, flow, and how heavy or light bleeding felt. Insights can relate those dates to pain, energy, and bowel symptoms.
Should I log blood in urine or stool?
Report it to a clinician first and log it afterward. The NHS says that if you think you have blood in your pee, you need to get it checked even if the amount is small, and it advises against self-diagnosis. Write the date, cycle day, color, and amount, plus what you did next and what the clinician advised.
After you have sought care, the Daily Journal in Endometriosis Journey can hold what happened and what you were told. Insights can show whether similar entries appeared in earlier weeks, which gives the clinician more context.
How do I log pain with sex?
Write whether it happened, whether it felt deep or shallow, the 0–10 score, how long it lasted, and what you changed. ESHRE and NICE both list deep pain with sex among the symptoms to consider. Share only what you are comfortable sharing, and ask the clinician how much detail they need.
In Endometriosis Journey, the Daily check-in and Daily Journal let you keep this short, by score or voice note. Insights can relate those entries to cycle timing over several weeks.
What do I log about scans?
Log the date, type of scan, center, and the report's wording as written. NICE recommends considering a specialist transvaginal ultrasound or pelvic MRI to diagnose deep endometriosis and assess its extent, interpreted by a specialist, so the interpretation stays with the specialist and not with you.
My Labs in Endometriosis Journey records result dates for imaging, bloodwork, and other tests. Insights can weigh those dates against the pain, bowel and bladder symptoms, and function of that week.
Do I need to know the stage?
Not for logging. NICE advises that treatment follow symptoms, preferences, and priorities rather than the stage of the disease. If a report states a classification, copy the wording exactly as written and ask your specialist what it means for you and your next steps.
The Doctor Report in Endometriosis Journey exports a one-page summary from your logged history. My Care Team holds visit notes where you can write down the answer you were given.
Who should I see for deep endometriosis?
NICE advises referral to a specialist endometriosis service for suspected or confirmed deep endometriosis, including disease involving the bowel, bladder, or ureter. Ask your primary care clinician about referral, and log the dates of each step, including waits.
In Endometriosis Journey, My Care Team stores each clinician with visit notes, so referral dates and names stay in one list. Insights can show how symptoms moved while you waited.
What do I bring to a specialist visit?
Bring one page with symptoms by area, cycle timing, tests and reports so far, treatments tried with dates, and two or three questions. Add older reports labeled with dates, plus a list of the clinicians and centers you have already seen.
The Doctor Report in Endometriosis Journey exports a one-page summary of your logged history, including dates, pelvic pain, cycle timing, and daily function. My Care Team keeps your questions and answers.
Does a symptom diary actually help?
ESHRE's guideline group concluded that no evidence shows a symptom diary or app reduces time to diagnosis, but that diaries may complement history taking by aiding objectivity and helping people demonstrate their symptoms. Treat it as support for the conversation with your clinician, not as a test of whether your symptoms are real.
In Endometriosis Journey, the Daily check-in keeps the same questions each day, which makes entries comparable from week to week. Insights can show which patterns repeat across the weeks you log and which stay quiet.
What if my scan was normal?
Keep logging and tell your clinician the symptoms persist. NICE says not to exclude the possibility of endometriosis if the examination and ultrasound scan are normal, and that referral may still be necessary.
The Flare Tracker in Endometriosis Journey marks days clearly worse than your usual hard week with onset, intensity, and a note. Insights can help you see whether a bad day was a single event or part of a run.
How do I log fertility plans?
Write when you hope to conceive, how long you have been trying, any earlier fertility care, and the dates of any tests. The working group wrote that fertility plans and indications for surgery should be discussed before a procedure, so tell the specialist early.
In Endometriosis Journey, the Daily Journal holds the plan in your words, and My Care Team stores the clinicians involved. Insights can relate cycle entries to symptoms over several months.
What if I miss days?
Resume the next day and mark the gap. A short entry on a hard day, even a single score, is worth more than a detailed entry weeks later. Review the pattern weekly instead of after every entry.
The Daily check-in in Endometriosis Journey takes a short guided pass, and Weekly Goals can set one small aim, such as logging every cycle day this week. Insights improve as weeks accumulate.
Who should see my symptom notes, and what about privacy?
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.