Nobody Warned US

The directory

Resource websites

Organizations, guidelines, specialist finders, and the desks where the papers live. External links open in a new tab. Bookmark the ones you want on your phone at 2 a.m. before an appointment.

Type

Topic

30 sites

Organization

Endometriosis Foundation of America

EndoFound

Education, advocacy, surgical training, and the ENPOWR school program. A first stop for endo literacy that does not treat period pain as a personality.

Organization

Endometriosis.org

World Endometriosis Society / global patient hub

Long-running global hub for research news, guidelines, and patient-facing explainers. Useful for watching what specialist societies are actually publishing.

Support

Endometriosis Association

Endometriosis Association

One of the oldest patient organizations. Support, education, and a reminder that this disease had a community before it had a social-media cycle.

Find a clinician

iCareBetter specialist directory

iCareBetter

A searchable directory of endometriosis and pelvic-pain specialists, including excision surgeons. Not a guarantee — still vet case volume, bowel/bladder skill, and whether they work with PT.

Guideline

ESHRE endometriosis guideline (2022)

European Society of Human Reproduction and Embryology

The current European standard of care. Clinical diagnosis is enough to start treatment. Bring it when someone wants to wait years for a camera.

Organization

Interstitial Cystitis Association

ICA

The U.S. patient organization for IC/BPS: education, diet starting points, provider search, associated-conditions pages (including endometriosis and pelvic floor).

Education

IC associated conditions

Interstitial Cystitis Association

A clear map of how IC overlaps with endometriosis, IBS, vulvodynia, fibromyalgia, and pelvic floor dysfunction — with the shared-nerve-pathway explanation, not a vibes explanation.

Education

NIH / NIDDK interstitial cystitis overview

National Institute of Diabetes and Digestive and Kidney Diseases

Federal patient page covering symptoms, diagnosis, and treatment options. Dry, accurate, and useful when you need a .gov source for an insurer or a skeptical relative.

Guideline

AUA IC/BPS guideline (2022)

American Urological Association

The U.S. urology standard. Education and pelvic floor PT are first-line. Kegels are contraindicated when the floor is tender. Print the executive statements.

Guideline

CUA 2025 selected treatment guideline for IC/BPS

Canadian Urological Association

2025 GRADE-based update including onabotulinumtoxin-A, Hunner-lesion care, PPS, and cyclosporine. Helpful for phenotype-based next steps.

Organization

American Urogynecologic Society

AUGS

The professional home of urogynecology. Patient education plus a “find a provider” path for prolapse, incontinence, and pelvic-floor fistulas.

Education

Voices for PFD

AUGS Foundation

Patient-facing sister of AUGS: prolapse, bladder, bowel, pessaries, surgery questions, in language that does not assume you have a medical degree.

Support

Pelvic Organ Prolapse Support (POPS)

Association for Pelvic Organ Prolapse Support

Peer support and practical articles on rectocele, enterocele, and living with POP. Strong on “what the exam missed” and bowel mechanics.

Find a clinician

International Pelvic Pain Society

IPPS

The society for clinicians who treat pelvic pain as a real field. Provider locator and educational meetings. A better random-directory roll of the dice than “gyn who does a little pain.”

Find a clinician

APTA Academy of Pelvic Health

American Physical Therapy Association

The professional body for pelvic PTs in the U.S. Start here to understand credentials (CAPP, WCS) and to find someone who treats pain, not only postpartum leaks.

Find a clinician

Herman & Wallace Pelvic Rehabilitation Institute

Herman & Wallace

A major training pipeline for pelvic-rehab clinicians. Their provider directory is one of the more reliable ways to find a PT who has actually studied this.

Education

Hypertonic pelvic floor

Cleveland Clinic

A clean explainer of high-tone pelvic floor: causes (including endo and IC), why Kegels can worsen it, and why PT to retrain — not just strengthen — is the primary treatment.

Education

MR defecography patient guide

Yale Medicine

What the test is, why dynamic imaging matters for prolapse and emptying, and what to expect. Hand this over when the right study is being treated as optional.

Education

Small bowel prolapse (enterocele)

Mayo Clinic

Patient page on enterocele: observation, pessary, surgery. Useful context alongside sigmoidocele, which is the colon version of the same posterior-compartment story.

Find a clinician

American Society of Colon and Rectal Surgeons

ASCRS

The colorectal-surgery society. Patient information and a find-a-surgeon tool for rectal prolapse, obstructed defecation, and pelvic floor.

Organization

International Urogynecological Association

IUGA

Global urogynecology society with patient leaflets on prolapse, incontinence, and pessaries in multiple languages.

Education

ACOG — endometriosis

American College of Obstetricians and Gynecologists

U.S. obstetrics and gynecology college patient and clinician materials. Use alongside ESHRE; ACOG is what many U.S. general gyns will recognize.

Find a clinician

International Society for the Study of Women's Sexual Health

ISSWSH

The society for clinicians who treat sexual pain as a medical problem. Provider finder when “just relax” has been the entire sex-pain workup.

Research

PubMed

NIH National Library of Medicine

The search engine for the actual papers. Search a condition plus “randomized” or “guideline” rather than doom-scrolling forums for your primary evidence.

Research

ClinicalTrials.gov

U.S. National Library of Medicine

Registry of recruiting and completed trials. Search endometriosis, interstitial cystitis, rectal prolapse, pelvic floor. Read inclusion criteria before you get your hopes up.

Support

The Endometriosis Network

The Endometriosis Network Canada

Canadian peer support, education, and navigation. Strong on “you are not dramatic” energy without the wellness gloss.

Education

Pelvic Floor First

Continence Foundation of Australia

Public-facing pelvic floor education that distinguishes strengthening from relaxing and covers bladder, bowel, and prolapse without U.S.-only framing.

Education

Center for Endometriosis Care — education library

CEC

A high-volume excision practice with a large free education library on deep disease, bowel/bladder involvement, and what “ablation vs excision” actually means.

Education

IC Network

Interstitial Cystitis Network

Patient education, diet starting points, and a long archive of IC treatment discussions. Cross-check anything commercial against the AUA guideline.

Advocacy

EndoWhat

EndoWhat

Patient-founded education and school/workplace advocacy. Useful when you need language for a principal, HR department, or someone who still thinks this is “cramps.”