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Nobody Warned US

The literature

Latest studies & guidelines

Not a complete PubMed dump — a working shelf. ESHRE and AUA first, then the overlap papers, then the imaging that actually catches a sigmoidocele and an internal prolapse. Bookmark what you want in the room.

16 sources

Review2026

Interstitial cystitis / bladder pain syndrome — StatPearls update

Lim Y, et al. · StatPearls / NCBI Bookshelf

A continuously updated clinical review: phenotypes, first-line conservative care (diet, pelvic floor relaxation and myofascial work, stress), oral and instillation options, and a list of treatments major guidelines recommend against.

Why it matters. A free, current overview you can send to a clinician who does not treat IC often. Confirm they know Hunner vs. non-Hunner paths differ.

Open source
Guideline2025

2025 CUA guideline: selected treatment recommendations for IC/BPS

Doiron RC, Tadayon B, Violette PD, et al. · Canadian Urological Association Journal

Updated Canadian recommendations using GRADE. Covers intradetrusor onabotulinumtoxin-A, Hunner-lesion strategy, oral pentosan polysulfate, and cyclosporine A, with an emphasis on phenotype-based rather than one-ladder-for-everyone care.

Why it matters. Useful when U.S. care feels stuck on a 2010s stepwise ladder. Newer selected treatments are named, with the evidence strength attached so you can ask why — or why not.

Open source
Review2025

Time to diagnose endometriosis: current status, challenges, and opportunities

De Corte P, et al. · BJOG

Diagnostic delay is still measured in 7–10 years in many cohorts. The paper inventories why: normalized period pain, normal imaging, gatekeeping around laparoscopy, and the cost of not believing adolescents.

Why it matters. If you have been circulating in the system for years, this is not a personal failure. It is a documented feature of how gynecology still runs.

Open source
Review2025

Endometriosis: new insights and opportunities for relief of suffering

Saunders PTK, et al. · eLife / PMC

A 2025 synthesis of mechanisms and treatment gaps: hormonal suppression with side effects, surgery that is not universally available or durable, and a pipeline toward non-hormonal, mechanism-based therapy and better phenotyping.

Why it matters. The research community is finally talking about earlier diagnosis and treatments that are not “shut the ovaries down or operate.” That shift is slow, but it is no longer imaginary.

Open source
Pipeline2025

Progress toward a non-hormonal treatment for endometriosis

Michigan State University research team (news summary of 2025 work) · MSU Today

MSU reported progress on non-hormonal approaches targeting disease biology rather than ovarian suppression, with the reminder that endometriosis often starts in adolescence — another argument against waiting a decade to treat.

Why it matters. Hormonal side effects are a leading reason people stop treatment. A credible non-hormonal path is one of the things patients have been asking for out loud.

Open source
Review2025

Twenty-five years of research in endometriosis

Garcia-Velasco JA, et al. · Reproductive BioMedicine Online

A quarter-century look-back: hormonal therapy and ART have moved in front of surgery as first-line in many settings, while surgery remains essential for selected disease. The field still struggles with heterogeneity — “endometriosis” is not one disease.

Why it matters. Helps you understand why two excellent clinicians can recommend opposite first steps, and why “the surgery vs. hormones fight” is the wrong frame.

Open source
Pipeline2025

Sunobinop (V117957) phase 1b in IC/BPS — study progress

Imbrium Therapeutics / Urology Times report · Urology Times

An investigational oral nociceptin/orphanin-FQ peptide receptor agonist completed a phase 1b in IC/BPS, with signals on urgency, frequency, and incontinence. It is not approved. It is a glimpse of bladder-pain drugs that are not old antihistamines or antidepressants.

Why it matters. The pipeline is not empty. It is also not a reason to delay the unglamorous things that already have evidence: PT, education, phenotype-based care.

Open source
Study2024

Prevalence and clinical correlates of endometriosis in patients with IC/BPS

Namugosa M, et al. · Journal / PMC (open access)

In 533 people with IC/BPS, 20.3% reported endometriosis. Those with both were younger, had more non-urologic associated symptoms, and were more likely to report chronic pelvic pain, fatigue, fibromyalgia, migraine, and pelvic floor dysfunction — a systemic rather than bladder-centric picture.

Why it matters. Hard numbers for the “evil twins” observation. If you have IC and cyclical pelvic pain, asking about endometriosis is not “adding a diagnosis for fun.” It is pattern recognition.

Open source
Review2024

The evil twins of chronic pelvic pain: endometriosis and IC/BPS

Inzoli A, et al. · Healthcare (MDPI)

A 2024 review of how endometriosis and IC/BPS overlap in chronic pelvic pain, why symptoms mimic each other, and why treating one organ often leaves the other — and the pelvic floor — unaddressed.

Why it matters. A readable map of the overlap for patients and for clinicians who still treat these as separate zip codes.

Open source
Review2024

Imaging of pelvic floor disorders involving the posterior compartment

Dhadve RU, et al. · Indian Journal of Radiology / PMC

2024 review of how posterior-compartment disorders present (obstructed defecation, incontinence, pressure) and how fluoroscopic and MR defecography sort rectocele, intussusception, and peritoneal herniations including sigmoidocele.

Why it matters. A current, practical argument that posterior-compartment pain and emptying are imaging diagnoses, not character diagnoses.

Open source
Review2024

MR defecography for pelvic organ prolapse (patient guide)

Yale Medicine · Yale Medicine

A plain-language explanation of what MR defecography is, what it is looking for, and why a dynamic study beats a rest-only pelvic MRI when the complaint is bulge, pressure, or incomplete emptying.

Why it matters. Something you can send to a clinician or insurer when the test is being treated as exotic. It should not be exotic if you have posterior-compartment symptoms.

Open source
Guideline2022

ESHRE guideline: endometriosis

Becker CM, Bokor A, Heikinheimo O, et al. · Human Reproduction Open

The European Society of Human Reproduction and Embryology’s full rewrite of endometriosis care. Clinical diagnosis is enough to start treatment; laparoscopy is no longer required first. Biomarkers including CA-125 are not recommended to diagnose or exclude disease. Medical and surgical paths are laid out for pain and infertility.

Why it matters. This is the document to carry into an appointment when someone says they “can’t treat you until you have surgery.” Average diagnostic delay remains 7–10 years; this guideline is one of the few system-level attempts to shorten it.

Open source
Guideline2022

Diagnosis and treatment of interstitial cystitis / bladder pain syndrome

Clemens JQ, Erickson DR, Varela NP, Lai HH, et al. · Journal of Urology / AUA Guideline (amended 2022)

The American Urological Association framework for IC/BPS. First-line care is education, behavioral modification, stress management, and — when the pelvic floor is tender — manual physical therapy. Kegel strengthening is explicitly to be avoided in that setting. Oral agents, instillations, Hunner-lesion treatment, and what not to offer are ranked by evidence.

Why it matters. Pelvic floor PT is the only IC treatment with an AUA evidence grade of A. If your workup has been cultures and a shrug, this guideline is the script for a better visit. Also: counsel on macular risk if pentosan polysulfate is on the table.

Open source
Review2022

MR defecating proctography of posterior-compartment disorders

Revels JW, et al. · RadioGraphics

A pictorial review of MR defecography: rectocele, rectal intussusception, enterocele, sigmoidocele, perineal descent. Includes a sigmoidocele case and the measurements used against the pubococcygeal line.

Why it matters. If someone has never ordered dynamic imaging for your emptying symptoms or posterior pressure, this is what they are missing. Grade 1 findings live in these pictures.

Open source
Review2022

Pelvic floor physical therapy for endometriosis (clinical interview)

Pillsbury C, interviewed for EndoFound · Endometriosis Foundation of America

A pelvic PT explaining why endo pain produces protective clenching, why PT helps even after good surgery, and the myth that pelvic PT “is just Kegels.” For pain patients, the work is often mobility and coordination, not strengthening.

Why it matters. A patient-readable companion to the AUA grade-A recommendation. Useful to hand to anyone still handing out Kegel sheets for pelvic pain.

Open source
Guideline2021

Consensus definitions for MRI of defecatory pelvic floor disorders

American Society of Colon and Rectal Surgeons / SAR / AUGS consensus · ASCRS toolkit / Diseases of the Colon & Rectum

Standardized language for reporting rectal intussusception, enterocele, sigmoidocele, peritoneocele, and perineal descent on MR defecography — so two radiologists (and two surgeons) mean the same thing.

Why it matters. Ask whether your report used consensus templates. “Mild posterior laxity” is not a diagnosis. Sigmoidocele grade and intussusception depth are.

Open source