This page has two parts:

Information and Resources regarding CAPPS

Information and Resources regarding specific CAPPS conditions

Listed below you will find patient-oriented organizations catering for specific conditions many of whom will provide some sort of referral list in addition to information about disability. For physican or other professional organizations that can provide referrals, please see our Find Treatment page.

News & Updates

The Alliance for Pelvic Pain - is organising a 2 day retreat for patients and their families with pelvic pain in Bethlehem, PA.  This retreat is created for female chronic pelvic, sexual and genital pain patients with complex symptoms involving one or more of the following: Interstitial Cystitis (IC), Vulvodynia, Vestibulitis, Irritable Bowel Syndrome (IBS), Pelvic Floor Dysfunction, Pudendal Neuralgia, Lichen Sclerosis, Endometriosis, and other pelvic and genital pain disorders.

Information and Resources for CAPPS

Basic Information

Firstly, for an introduction, please see our Why CAPPS? page.

- Disorders of adhesions or adhesion-related disorder: monolithic entities or part of something bigger--CAPPS? This is the landmark paper produced as a result of IAS research. Click here for the full text article and here for a lay summary and here for the PubMed abstract.

- Diagnostic laparoscopy and adhesiolysis: does it help with complex abdominal and pelvic pain syndrome (CAPPS) in general surgery? A paper coming from the Adhesions (CAPPS) clinic set up by the IAS with Dr. Redan and McCarus.

- Evidence for overlap between urological and nonurological unexplained clinical conditions. One of the growing number of papers to document the overlap between the various CAPPS conditions.

Organizations
- Chronic Pain Research Alliance (CPRA), formerly the Overlapping Conditions Alliance. This is the sister group to the Campaign to End Chronic Pain in Women.

- Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network


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Information and Resources for specific CAPPS conditions

Adhesions and Adhesions Related Disorder (ARD)

Basic Information

- Comprehensive information and resources on Adhesions and Adhesion Related Disorder (ARD) at the International Adhesions Society (IAS)

- Adhesion Related Disorder by Dr. Clark Gerhart, another doctor experienced in ARD.
- IAS Research on Severe Adhesion Related Disorder (ARD); Pattern of Bowel Dysfunction and Obstruction, Social and Physician Issues: an Internet Survey
- IAS Research on Adhesions Related Deaths

Organizations

- International Adhesions Society (IAS)

Chronic Fatigue Syndrome
- Chronic Fatigue and Immune Dysfunction Syndrome Association of America (CFIDS)

Dyspareunia (Painful Sexual Intercouse)

- Why does it hurt when I have sex? – ASRM.
- Sexual intercourse – painful

Endometriosis

Basic Information

Please see the IAS overview page here.

Organizations

- Endometriosis Association

- Endozone

- Endometriosis Research Center 

- Endometriosis Information Forum

Fibromyalgia

Basic Information

- Fibromyalgia – National Library of Medicine.
- Fibromyalgia – WebMD
- Fibromyalgia.com

Organizations

- Fibromylagia Network

- National Fibromylagia & Chronic Pain Association (NFMCPA)

Fibroids, Myomas, Leiomyomas, Myomectomy

Basic Information

- Uterine Fibroids, Myoma, Myomectomy. Please see the IAS page on fibroids here.

Organizations

- Fibroid Treatment Collective

- National Uterine Fibroids Foundation (NUFF)

Hysterectomy

Basic Information
Although ANY surgical procedure has the potential to result in adhesions, we have highlighted hysterectomy because of its particular prevalence and ability to result in problems from adhesions and other CAPPS issues. Please see the IAS's page on hysterectomy here.

- Unhysterectomy (also name of a book) - a site written by author and patient Holly Bridges about alternatives to hysterectomy.

Online Community

- HysterSisters

IBS – Irritable Bowel Syndrome

Basic Information

- Irritable Bowel Syndrome – National Library of Medicine

- National Digestive Diseases Information Clearinghouse (NDDIC)
- WebMed
- Irritable bowel syndrome and chronic pelvic pain: a singular or two different clinical syndrome?
- Defining and diagnosing irritable bowel syndrome

Organizations

- Irritable Bowel Syndrome Self Help and Support Group
- International Foundation for Functional Gastrointestinal Disorders (IFFGD)

Interstitial Cystitis (IC), Painful Bladder, Overactive Bladder 

Basic Information

- Interstitial Cystitis from National Library of Medicine
- Interstitial cystitis/bladder pain syndrome fact sheet
- Interstitial Cystitis/Painful Bladder Syndrome - NIDDK
- Patients with chronic pelvic pain: endometriosis or interstitial cystitis/painful bladder syndrome?
- Interstitial cystitis and endometriosis in patients with chronic pelvic pain: The "Evil Twins" syndrome.

Organizations
- Interstitial Cystitis Association

- Interstitial Cystitis and Overactive Bladder Network
- International Painful Bladder Foundation
- Interstitial Cystitis Painful Bladder Syndrome Support

- Bridge for IC

Chronic Pelvic Pain (CPP)

Basic Information

- Surgical treatment for chronic pelvic pain
- What is Chronic Pelvic Pain? – International Pelvic Pain Society
- Chronic Pelvic Pain and the Overlap of Pelvic Pain Disorders by Michael Pezzone MD.
Dr. Pezzone is the principal investigator of an NIH study that looked at the pathways of neurogenic cross-sensitization of pelvic viscera and its implications for the overlap of irritable bowel syndrome, interstitial cystitis, and other chronic pelvic pain disorders.
- Managing Pelvic Pain – ASRM
- Current concepts of pelvic congestion and chronic pelvic pain. An excellent review by the late Dr. Perry, founder of the International Pelvic Pain Society.
- Chronic pelvic pain in the community--symptoms, investigations, and diagnoses. 

Organizations

- International Pelvic Pain Society – has searchable database for physicians and other providers.
- Pelvic Pain Support Network – UK

Pudendal Neuralgia/ Neuropathy

Basic Information

- Chronic proctalgia and chronic pelvic pain syndromes: new etiologic insights and treatment options. - Review paper includes information about PN.


Organizations

- Health Organization for Pudendal Education (HOPE)


Pain and Chronic Pain, General Resources

Please refer to General Links page containing resources concerning pain and chronic pain in general.

Complex regional pain syndrome, CRPS; RSDS; Causalgia - RSD; Reflex sympathetic dystrophy (RSD) syndrome

Basic Information
- CRPS information from the National Library of Medicine
- Global approach to chronic pelvic and perineal pain: from the concept of organ pain to that of dysfunction of visceral pain regulation systems

Organizations
- Reflex Sympathetic Dystrophy Association

Temporomandibular Joint Disorders

Organizations

- The TMJ Association

Vulvodynia

Basic Information
Please see the IAS's page on Vulvodynia here.

Organizations

 - National Vulvodynia Association

- The Vulvar Pain Foundation (VPF)
- The Vulval Pain Society, UK (VPS)
- Vulvodynia Support


Lichen sclerosus

A number of patients with CAPPS conditions report also lichen sclerosus,  a dermatological condition affected mainly the genital and perianal areas. It is characterized by itching and sometimes pain with tearing or blistering of the skin. It is believed to be an autoimmune disease and whether it is made worse by other CAPPS conditions, or if it worsens other CAPPS conditions is not entirely clear.

Basic Information

What is Lichen sclerosus? - Easy guide from NIH

Organizations

Worldwide Lichen Sclerosus Support