Vulvodynia and Endometriosis Together: A Shared Pain Record

Updated 10 October 2026

Vulvar pain and pelvic pain can overlap, and when both are present it is hard to say at a visit which pain was which. Where it hurt, when in the cycle it began and what it felt like tend to blur by the time a clinician asks.

This guide sets out what NICHD, the Office on Women's Health and two research papers say about vulvodynia and endometriosis, then offers a table of the statements, a shared pain record, a list of words, four steps and a one-page summary. This guide keeps a record of what you notice and what you hear from clinicians. A clinician decides what any pain means, and nothing here diagnoses either condition or suggests a treatment.

What NICHD, Women's Health and two studies say about vulvodynia and endometriosis together

NICHD describes vulvodynia as a term used for chronic pain, lasting at least 3 months, of the vulva that does not have a clear cause, such as an infection or cancer. Its page on endometriosis describes a disease in which tissue similar to the lining of the uterus grows in other places in the body.

The Office on Women's Health lists the kinds of pain associated with endometriosis, including pain during or after sex, which it says is usually described as a deep pain and is different from pain felt at the entrance to the vagina when penetration begins. That difference in location is one way the sources separate the two pictures.

On how often they occur together, a review in Frontiers in Reproductive Health says vulvodynia and endometriosis are comorbid in approximately 11% of affected individuals. A Journal of Pain Research survey of 1,457 women with diagnosed vulvodynia asked about comorbid pain conditions, and endometriosis was among those listed alongside interstitial cystitis, fibromyalgia, irritable bowel syndrome and others.

The sources describe two separate conditions that sometimes coexist, with some features, such as the place where pain is felt, that help tell them apart. They give no way to tell what your own pain represents, and they do not say that one condition leads to the other. That judgment belongs to a clinician, and a record that notes where, when and what the pain was like gives that judgment more to work with.

Anything you wonder about the two kinds of pain can be typed into the Daily Journal of Vulvodynia Journey (by Health Journey Labs) when it occurs to you, so the wording is yours at the visit.

Two separate conditions that sometimes coexist: what each source says and for whom

The sources speak about different things, and the table sets out who says what.

Two-condition sources table, by Vulvodynia Journey

The table shows two definitions, one feature that helps locate pain and two research statements about the overlap. The 11% figure describes a share of people who have either condition, and it leaves out who your own pain belongs to. The survey asked women who already had a vulvodynia diagnosis about other conditions, so it describes that group and not everyone with pelvic pain.

For note-keeping, the point is to record where each pain is felt and what it is like, since the sources use location to separate them. The guide to starting to track vulvodynia describes a light way to begin the wider history.

Dates of swabs, scans and other tests can be kept in My Labs of Vulvodynia Journey, so the results are listed in one place beside your pain notes.

A shared pain record for the visit: where, when in the cycle and what it was like

One row for each pain day lets a clinician read two kinds of pain side by side. The columns below are for what you notice.

Shared pain table, by Vulvodynia Journey

Write the date and the cycle day, then the vulvar pain and the deeper pelvic pain on separate 0 to 10 scales, with a few words on what each felt like. Add what the day limited. If pain happens during sex and you wish to record it, note whether it was at the entrance or deeper, in your own words. Mark unsure details with a question mark.

After a cycle or two, read down the rows. A clinician may see whether one pain follows the cycle while the other stays steady, which a single visit cannot show, and which can guide what the clinician asks next. The record notes what you felt, and what it means is for the clinician. The guide to preparing for a short vulvodynia doctor visit covers bringing a page to a brief appointment.

Here is where each column of the record can live in Vulvodynia Journey: the Period Tracker for cycle dates, the Daily check-in for pain scores and the Daily Journal for what it felt like.

Words for vulvar pain, deeper pelvic pain and cycle timing

A clinician will ask where the pain is and what it is like, and a short list of words helps you answer in the same terms each time.

Words for vulvar and pelvic pain

Vulvodynia Journey keeps vulvar words and pelvic words apart.

• Vulvar words: burning, stinging, rawness, soreness, itching, throbbing, sore to touch.
• Deeper pelvic words: cramping, aching, pulling, sharp, deep, low in the back.
• Timing words: before the period, during, after, mid-cycle, any time.
• Limit words: sitting, clothing, walking, exercise, sex, sleep, work.
• In your words: any term that matches how it felt.

Choose the words that match the day and write them with the date. Should a word fit only in part, mark it with quotation marks as a note that it was a guess.

Pain in this area is easy to describe vaguely, and a few fixed words make the account more consistent from one day to the next. These words follow the descriptions in the sources: NICHD lists burning, stinging, irritation, rawness, itching, soreness and throbbing for vulvar pain, while the Office on Women's Health describes very painful menstrual cramps, lower back and pelvic pain and deep pain during sex for endometriosis. The clinician might prefer other terms and will let you know. Fever, heavy bleeding, pain that is severe or rising quickly, or pain with vomiting belong with a clinician promptly, and the record can be filled in afterward. The guide to getting through a vulvodynia flare day without losing notes shows how to keep notes on bad days.

The terms that suit each day can be added to the Daily Journal of Vulvodynia Journey with the date, so a clinician hears it as you describe it.

Four steps to prepare for a visit about overlapping pelvic pain

A gynecology visit is usually short. Four steps help your record take a clear place in it.

Steps before an overlapping pelvic pain visit

Vulvodynia Journey suggests these four steps to show where each pain is felt and when it comes.

1. Fill the record for at least one full cycle, one row per pain day.
2. Underline the days when either pain was strongest and note the cycle day.
3. Write a three-line summary: where each pain is felt, when it comes and what it limits.
4. Ask first about the cycle days when both pains peaked, then about which clinician follows each one.

From Vulvodynia Journey, we recommend finishing the summary the day before the visit (Vulvodynia Journey checklist), so the record is current.

Say at the start that you have noted two kinds of pain and hand over the page. Say the summary aloud first, then take the clinician's questions. If speaking about some details is hard, the page can say them for you, and you decide what to include.

Keep the summary short. A page with the pattern and three lines is easier to read than every row, and the full record stays available if the clinician wants more. Two cycles of rows are a good base, and a third adds confidence that a pattern repeats. Add any answers to the page, with the date, so the next appointment begins from what was said.

The evening before the visit, Vulvodynia Journey holds pain scores, cycle dates and questions together, so the three lines come from entries already made.

One summary page for the clinician: where each pain is, when it comes and your questions

A single page lets a clinician see both pains before the first question is asked.

Summary page for the clinician, by Vulvodynia Journey

• The cycles covered and the number of pain days.
• Where each pain is felt, in your words.
• When each pain comes in the cycle, and what makes it better or worse.
• What each pain limits.
• Anything else a clinician said, along with the date.
• Two or three questions for this visit.

Place the page in the clinician's hands first thing and offer to walk through it. If the clinician suggests a test or a plan, write it on the page with the date so it goes with you. If a test is booked, note where and when, and what you were told to expect, so that the next visit can begin with the result. Take a copy home and note each answer on it, with the clinician's name beside it.

The page keeps track of what you noticed and what you heard. What is causing each pain, which tests are needed and what should be done are for your clinician to decide, and the sources here describe two conditions and their overlap without giving instructions. A clear record is the most useful thing to bring, and it keeps its value whatever the clinician decides. If pain becomes severe or sudden, seek care promptly and add it to the page afterward.

A page of pain scores, cycle days and questions comes out of the Doctor Report in Vulvodynia Journey for you to hand across, and My Care Team holds what each clinician said.

How Vulvodynia Journey can help

A shared pain record on a sheet of paper is enough to begin. If you want pain notes, cycle dates and visit questions in one dated history, the best vulvodynia apps guide compares the options.

Vulvodynia Journey is a personal vulvodynia tracker from Health Journey Labs on the App Store and Google Play. One cycle of rows says more than a general description when the appointment arrives. Whatever the clinician decides, the scores, the words and the cycle days stay on one sheet. Below is what you can use and how each part helps.

• Daily check-in — Logs physical symptoms, emotional state, nutrition, sleep, exercise, meds, external factors; app-specific items: pain quality, sitting or clothing triggers, intimacy or exam context when you choose to note it, how the day limited you; read together with the rest of the logged history.
• Daily Journal — Logs free-text notes, voice entry; app-specific items: what the day limited, tampon or pad choice, exam after-effects, partner talks, visit debriefs, leftover shame after a dismissive comment, a look-fine mismatch line; read together with scores and other logged history (adds context).
• Flare Tracker — Logs flag a day clearly worse than the usual hard week, onset, intensity, short note; app-specific items: pain, sitting intolerance, touch sensitivity; read together with history across weeks (one-off spike vs repeating pattern).
• My Meds — Logs medicine names, timing, dose; app-specific items: topical or oral options you already use as directed; read together with pain weeks, sleep, the rest of the tracked history.
• My Labs — Logs result dates; app-specific items: swabs, cultures, other tests; read together with ongoing pain and function.
• Weekly Goals — Logs one small aim, whether it held; read together with real check-ins.
• Learn — Logs short education topics, prompts; app-specific items: pain patterns, pacing, visit prep, why a clear swab can still be clinically relevant; read together with your own logged weeks.
• AI companions — Logs Clara (general chat), specialist companions; app-specific items: knowledge, fitness, nutrition, relationships; read together with your logged history (companions already see it); used for: visit wording; a calm partner script; a soft rain-check line; a listening ear after a hard pain day.
• My Care Team — Logs clinicians, short visit notes; app-specific items: tends to treat every visit as infection until proven otherwise; read together with logged history; used for: visit prep (what to ask and bring); notes during the visit; review afterward.
• Doctor Report — Logs one-page summary exported from logged history; app-specific items: dates, pain, triggers, function, what you tried; read together with the history already logged; visit type: gyn.
• My Assessments — Logs structured check-ins beyond daily scores, onboarding life and social context; read together with ongoing history.
• Food Tracker — Logs meal or drink lines.
• Period Tracker — Logs start and stop dates, flow, how heavy or light bleeding felt; read together with pain, sleep, flare, everything else logged.
• Weight Tracker — Logs scale or body notes; read together with the rest of the logged history.

Everything you log builds one history, and insights get stronger as it grows. Custom symptoms let you add your own labels.

Sources

• NICHD: vulvodynia
• NICHD: endometriosis
• Office on Women's Health: endometriosis
• Journal of Pain Research: comorbidity patterns among women with vulvodynia
• Frontiers in Reproductive Health: vulvodynia and pain comorbidities

FAQ

The answers below draw on the sources cited in this guide, and the app they mention is Vulvodynia Journey (by Health Journey Labs).