What it is
- Endometriosis is estimated to affect about 1 in 10 people of reproductive age — roughly 190–200 million worldwide. Lesions can be superficial, ovarian (endometriomas), or deep infiltrating, including bowel and bladder.
- Pain does not reliably match “stage.” Mild-looking disease can be disabling; extensive disease can be quieter. That mismatch is one reason people are disbelieved.
- The ESHRE 2022 guideline moved away from “laparoscopy first.” Clinical diagnosis — history, exam, and expert imaging — is enough to start treatment. Surgery remains important for confirmation, excision, and selected infertility cases.
- Endometriosis shares nerve pathways and inflammatory signaling with interstitial cystitis, IBS, and pelvic floor spasm. Treating only the lesions often leaves the neighborhood on fire.
What it can feel like
- Period pain that folds you in half, misses work, or needs more than ibuprofen
- Deep pain with sex, tampon insertion, or pelvic exams
- Cyclical bowel or bladder symptoms that get waved off as IBS or UTIs
- Bloating that can look like a second trimester (“endo belly”)
- Fatigue, low-back and hip pain, ovulation pain, infertility
What you were probably told
- “That’s just a heavy period. Everyone has those.”
- “Have a baby and it will get better.”
- “The scan was normal, so nothing is wrong.”
- “You are too young for endometriosis.”
How it actually gets named
- A careful history of cyclical and non-cyclical pelvic pain, dyspareunia, dyschezia, dysuria, and infertility.
- Speculum and bimanual exam looking for nodules, fixed uterus, uterosacral tenderness — a “normal” exam does not rule it out.
- Expert transvaginal ultrasound or MRI can map deep disease and endometriomas. Superficial peritoneal disease is still often invisible on imaging.
- Diagnostic laparoscopy with histopathology remains the historical gold standard, but current guidelines do not require it before trying medical therapy.
- Serum CA-125 and other blood/menstrual biomarkers are not recommended to diagnose or exclude endometriosis (ESHRE 2022).
What tends to help
- A clinician who believes you on visit one. That is treatment, not courtesy.
- NSAIDs, continuous combined hormonal contraception, or progestins as first-line medical options; GnRH analogues with add-back for refractory pain.
- Excision (not just ablation) by a high-volume endometriosis surgeon when disease is deep, bowel-involving, or medical therapy fails.
- Pelvic floor physical therapy for the guarding that grows around the pain — mobility and down-training, not a stack of Kegels.
- Multidisciplinary care when bladder, bowel, and floor are involved: gyn, colorectal, urology, pain, PT.
Take these into the room
- Does my history alone support treating me for suspected endometriosis without waiting years for a laparoscopy?
- If imaging is “normal,” what else should we look at — bladder, pelvic floor, bowel?
- If we operate, will you excise disease or burn it, and how many endo cases do you do a year?
- Who on your team handles pelvic floor PT and IC if those are in the picture?