International Society for

Complex Abdomino-Pelvic & Pain Syndrome

(CAPPS)

YOU have been suffering for years from one or more of the following:
• Adhesions, Adhesion Related Disorder (ARD)
• Chronic Abdominal Pain (CAP)
• Chronic Pelvic Pain (CPP)
• Dysparuenia (Painful intercourse)
• Endometriosis
• Interstitial Cystitis (IC), Painful Bladder, Prostatitis
• Irritable Bowel Syndrome (IBS)
• Pudendal Neuropathy, pudendal neuralgia (PN)
• Vulvodynia, Vulvar Vestibulitis

- YOU may also have:
• Bowel Obstruction (SBO)
• Chronic Fatigue Syndrome (CFS)
• Uterine Fibroids (myomas, leiomyomas)
• Fibromylagia, Myofascial Pain
• Infertility
• Pelvic Floor Dysfunction or Pelvic Floor Disorder (PFD)
• Pelvic Inflammatory Disease (PID)
• Sacro-iliac joint pain (SI Joint)
• Sleep disorder, depression
• Temporomandibular Disorders (TMJ, TMJD)
• Thoughts of suicide

- If you had a hysterectomy, it only made things worse
- Surgery or other treatment have given you at best temporary relief
- You have tried one treatment after the next with little success
- You have been from one specialist to the next
- You have had one test after the other
- No one can find anything physically wrong with you
- You have been told that this is “all in your head”
- You have been told that you are a “drug seeker”
- No one believes you:
• Not your coworkers (if you can still hold a job)
• Not your friends (if you have any left)
• Not your family or children
• Not your spouse/ partner
• and worst of all, not even YOU !!!
- YOU FEEL YOU ARE ALL ALONE

Thousands of you will be reading this for the first time. We hope that you will be comforted by the fact that you are NOT ALONE in your suffering.

WE are patients, scientists and health professionals with one simple goal:

To research and advance the integrated diagnosis and treatment of patients suffering with multiple pelvic, urologic and abdominal disorders and to provide support and resources for them.

CAPPS in a nutshell:
• What start out or appear as, separate conditions are a actually family of overlapping and coalescing conditions - CAPPS.

• Patients starting with one CAPPS condition (eg pelvic pain) will often develop problems with the bowel, bladder and other areas in varying degrees, sequences and combinations.

• When pain has persisted for such a long time due to some particular cause, PAIN itself becomes a disease of its own causing changes within the Central Nervous System. Due to cross-talk between neurons, what was "only" pain in the vaginal area for example, may now be perceived in previously uninvolved organs, such as the bladder. Those organs may even develop actual inflammation, furthering the problem and creating functional problems (eg IBS, IC symptoms) in those organs. This is CAPPS.

• Often surgery alleviates the pain, but returns after 3-12 months. This is not necessarily due to the return of the original problem (eg adhesions, endometriosis), but because it takes this amount of time for the miscreant nervous system to return to its old ways.

• Although surgery is often necessary for specific reasons (eg bowel obstruction), removing the original "cause" of the pain may not help because the source of continued pain is now the nervous system. Often hysterectomy expands the scope and intensity of the problem.

• The diagnosis given to a patient for what may be essentially the same condition will depend on what sort of doctor the patient sees first. GYNs will give a diagnosis of Pelvic Pain, UROs - Interstitial Cystitis, GIs - IBS, Neurologists - Pudendal Neuropathy etc.

• Because many of the individual symptoms are interelated, attempting to deal with them separately is often an exercise in frustration and futility. Patients must be treated by a team of multi-disciplinary, integrated and holistic professionals. Not only must disease-specific issues (e.g. bowel obstruction due to adhesions, immune issues in endometriosis) be addressed,  but also the conditions that have arisen subsequently (eg IC, IBS).
• Individual conditions must be understood in the context of the family of conditions to which they belong.

We hope that ISCAPPS and its web site will:
• Liberate CAPPS patients from the confusing bonds of compartmentalized medicine that has until now hindered their diagnosis and treatment.
• Provide a rational basis for CAPPS patients to understand their condition.
• Provide a rational basis on which CAPPS patients can seek treatment, and for the first time dare hope that they will obtain some measure of relief.

The GOOD NEWS is that:
• Now that we have a better understanding of the disease we can embark on its prevention and treatment.
• Pioneering work done by workers around the world, including the International Adhesions Society has recognized that conditions including adhesions/ ARD, endometriosis, IC, IBS and pelvic pain are part of a wider set of overlapping and coalescing conditions
• Although we may not yet have all the answers, for the first time we believe that we can ask the right questions.

But there is lots more to do. Please join us in these efforts.