The IC Underground

This is a very quick test of the CMS system. Check out our latest videos at: http://www.ic-network.com/videos/

Cranberry juice found to be ineffective at treating bladder infections! Read the study at: http://infectious-diseases.jwatch.org/cgi/content/full/2011/119/1

Queens University – Gynecological Patient Survey

(Posted – March 2011) The Department of Psychology at Queen’s University is looking for female volunteers over 18 years of age and fluent in English to complete a secure online survey examining women’s experiences with gynecological examinations. We are looking for women with gynecological conditions, such as interstitial cystitis, vulvodynia or endometriosis, to complete the survey.

Your participation would entail completing an online survey, which includes questions about your medical and sexual history, experiences with gynecological examinations, as well as various questionnaires, including measures of psychological and sexual function, body image and doctor-patient interactions. The survey will take 45 to 60 minutes to complete and all information is kept strictly confidential. To thank you for your participation, you will have the option of providing your email address after finishing the survey to be considered for a draw for 50$. Four draws of 50$ each will take place at the end of each month.

If you are interested in participating and would like more information, please contact the Sexual Health Research Laboratory by phone (613) 533-3276, or email, SHRL@queensu.ca. Alternatively, you can visit the following website to directly access the survey: https://surveys.psyc.queensu.ca/Checkbox/scbwh.aspx. All calls and email contacts are treated with the strictest confidentiality.

This study accepts patients from Canada, the USA and overseas. Must speak english!

Queens University -Vulvodynia Vs. Chronic Pelvic Pain in Women: Neuropathic Pain Conditions? A Pain Characteristics study

(Posted – March 2011) We are currently recruiting women for an online research study being conducted in the Department of Psychology at Queen’s University examining characteristics of women who experience pain in the vulvar/genital region and/or the abdominal region.

We are looking for any women who have experienced this kind of pain for at least six months to participate. We are also looking for women who have previously experienced shingles and still feel pain after the rash has healed. Finally, we are looking for women who are not experiencing a chronic pain condition.

The survey takes approximately 30-45 minutes to complete, and all information is completely anonymous. As a thank you, we will be doing four draws each month for $50 prizes.

Please consider participating in this study and please pass on to other women who may be interested. Participants must be fluent in English and over the age of 18.

If interested, please contact the Sexual Health Research Laboratory by phone (613) 533-3276, or email, SHRL@queensu.ca. Alternately, feel free to visit the following website to access the survey directly:https://surveys.psyc.queensu.ca/Checkbox/neuropain.aspx

All calls and email contact are treated with the strictest confidentiality.

This study accepts patients from Canada, the USA and overseas. Must speak english!

University of Ottawa

Researchers at the University of Ottawa are looking for women with vaginismus or provoked vestibulodynia (aka vulvar vestibulitis syndrome) to complete a questionnaire study on sexual health. Women between the ages of 18 and 44 who have always had difficulty with vaginal penetration or have had pain during half of all intercourse attempts are invited to participate in this research project.

Participation involves completing a set of questionnaires at home and sending them anonymously to the Human Sexuality Research Laboratory at the University of Ottawa.

For more information about this study, please call 613-562-5800, ext. 2220, or emailsexualhealth@uottawa.ca

Diane Newman RN has written a fabulous summary of a speech given by Ken Peters in February 2011 at the PACS conference in Dubai. She shares the data offered on sacral nerve stimulation and pudendal nerve stimulation but what makes this particularly exciting is the review of the newest studies which show that tibial nerve stimulation (performed at the ankle and with minimal side effects or trauma) is extremely successful with one study showing a 71% effectiveness rating. I was an early PTNS patient when it was first developed at UCSF by Dr. Marshall Stoller… and I’m delighted to see the best neuromodulation specialist in the world (Dr. Peters) offer enthusiasm for this much less invasive yet apparently similarly successful nerve stimulation approach. – Jill

http://www.ic-network.com/forum/showthread.php?p=573854

I just received this email from an ICN forum member! She reminded me and hopefully you that you can help advance the IC research movement and make a little $ on the side by participating in some very easy studies. In some cases, it’s an interview or survey or, as in the Stanford Pelvic Pain Study, it may take a but more! But, in any case, the IC movement is strengthened by the patients who participate and, to them, I say ((((Thank you!)))) – Jill 

(From ICN Member Nyema) Stanford is part of the Multidisciplinary Approach to Pelvic Pain (MAPP) study. They are looking for more patients and they pay well.

Here is their contact info:
snapl@stanford.edu
http://snapl.stanford.edu/pelvicpain/

Here’s a nice slide show of the worst foods that can irritate even healthy bladders, much less IC bladders!

http://www.medhelp.org/general-health/slideshows/10-Worst-Foods-for-Your-Bladder/138

This is very sad. An IC patient Tammy Dawn Daniels (age 35) died in 2009 from “toxic amounts of the drugs” (pain medications) in her system. The prescribing doctor, Dr. Mickey Ray Tyrell, was suspended for 30 days and sentenced to 200 hours of community service.

What a tragedy this is. – Jill

Here’s another novel use for botox, the treatment of painful vaginal spasms. It looks like it could be VERY helpful for patients struggling with vaginismus. Please share!

http://www.modernmedicine.com/modernmedicine/Obstetrics/Gynecology+&+Women’s+Health/Botox-treats-painful-vaginal-spasms/ArticleStandard/Article/detail/710739?contextCategoryId=40157&srcemalert=40157&auid=162818

While it’s commonly understood that a IC/BPS is probably a syndrome of conditions. Think about it. Why do some patients have Hunner’s ulcers and others don’t. Why do some patients have vulvodynia or IBS while others don’t. Why do some patients just have frequency while others have pain? We’re still trying to figure it out.. but one piece of the puzzle for SOME patients is what this study is talking about… “central sensitivity syndrome.” I think that this explains why so many IC patients have other related conditions like IBS, vulvodynia, etc. I do think this is at the root of my personal health struggles. I am the sensitivity queen.. GRRRR!!! – Jill

Pain Manag Nurs. 2011 Mar;12(1):15-24. Epub 2009 Dec 2.
Central sensitivity syndromes: mounting pathophysiologic evidence to link fibromyalgia with other common chronic pain disorders.
Kindler LL, Bennett RM, Jones KD.

Center for Comprehensive Pain Research, University of Florida, Gainesville, Florida.
Abstract

The aim of this study was to review emerging data from the fields of nursing, rheumatology, dentistry, gastroenterology, gynecology, neurology, and orthopedics that support or dispute pathophysiologic similarities in pain syndromes studied by each specialty. A literature search was performed through PubMed and Ovid using the terms fibromyalgia, temporomandibular joint disorder, irritable bowel syndrome, irritable bladder/interstitial cystitis, headache, chronic low back pain, chronic neck pain, functional syndromes, and somatization. Each term was linked with pathophysiology and/or central sensitization. This paper presents a review of relevant articles with a specific goal of identifying pathophysiologic findings related to nociceptive processing. The extant literature presents considerable overlap in the pathophysiology of these diagnoses. Given the psychosomatic lens through which many of these disorders are viewed, demonstration of evidence-based links supporting shared pathophysiology between these disorders could provide direction to clinicians and researchers working to treat these diagnoses. “Central sensitivity syndromes” denotes an emerging nomenclature that could be embraced by researchers investigating each of these disorders. Moreover, a shared paradigm would be useful in promoting cross-fertilization between researchers. Scientists and clinicians could most effectively forward the understanding and treatment of fibromyalgia and other common chronic pain disorders through an appreciation of their shared pathophysiology.

Copyright © 2011 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.