Interstitial Cystitis Network Newsletter

This Week on the ICN! August 14, 2014

Sponsored by: CystaQ - Desert Harvest Aloe - MultiRight Low Acid Multivitamin - Squatty Potty - PainShieldMD

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New, Comprehensive IC Book Released!

Gaye & Andrew Sandler have released their first new book in a decade for men, women & children struggling with IC and its many related conditions. What sets this husband and wife team apart from so many other authors who have written about interstitial cystitis is their focus on patient comfort. In The Proactive Patient: Managing Interstitial Cystitis/ Bladder Pain Syndrome and the Related Conditions, they've created a comprehensive resource guide that will help patients, young and old, as they explore treatments, learn to manage their IC symptoms, reduce pain and enjoy intimacy again.

Every chapter provides the reader (and their family members) with tips and strategies to ease discomfort, control flares and better manage their symptoms. The discussion of traditional therapies is balanced with alternative and complementary therapies for those patients who lack health insurance and/or prefer a more natural approach to treatment.

Gaye was the first author to explore the relationship between IC and its many related conditions and expands that discussion dramatically in this new book, providing information and self-help tips for patients struggling with IBS, constipation, pelvic floor dysfunction, pudendal neuralgia, fibromyalgia, TMJ, hypothyroidism and others.

I particularly appreciated the chapter "Reclaiming Comfort in Your Body," which explores exercise ideas, stretching tips and yoga poses that can help ease discomfort, lessen muscle tension and regain strength in a pelvic floor compromised by pain, particularly for patients who continue work and/or who struggle with sitting.

Their discussion of hormones, pregnancy, midlife and sexuality is excellent. They review, in-depth, the struggles that women face as they age. If you're not sure if hormone replacement therapy is right for you, they provide an excellent discussion of the pros and cons of various hormone treatments. They explore the challenge of intimacy with practical tips on how to reduce discomfort associated with intercourse. Patients exploring pregnancy will find the information on point, even down to the discussion of pros and cons of various delivery methods.

It is fitting that the book ends with a chapter written by Andrew, titled "Living with IC/BPS: A Partner's Perspective," who, with brutal honesty, shares his experience as spouse to an IC patient. He shows how a healthy relationship and family can not only survive but also thrive by creating a foundation of honesty and communication. Gaye and Andrew's desire to help others makes them a treasure of the IC movement. Thank you for, yet again, writing a book that will help patients regain their confidence, rebuild their strength, build their knowledge and, most importantly, ease their suffering. - Jill Osborne, ICN President & Founder

Click here to read our book review, see the Table of Contents or buy!

 

Summer IC Optimist Now Available

IC Optimist Summer 2014The IC Optimist is the ICN's quarterly patient and professional magazine dedicated to all things IC and pelvic pain. Subscribers should be receiving their copies in the next week!

In this issue:

(1) Guest Editorial: Have You Been Punished For Using The Restroom at Work? - It's 2014 and some employers are still punishing employees who need restroom access. I discuss two new cases this Spring, review the actual law and share several IC patient stories.

(2) Related Conditions: IC & TMJ - Many find it baffling that this common jaw disorder is one of the most strongly related conditions to IC. Stacey Shannon offers an in-depth review of TMJ and shares several patient stories.

(3) Inside AUA 2014 - The annual American Urological Association annual meeting is the highlight of the IC research community and this year, several promising studies were released that reveal more about IC, two possible subsets of IC and new, potential therapies.

(4) 2014 IC/BPS Fact Sheets - This summer, we completely revamped our IC fact sheets that are distributed by doctors throughout the country. We including copies for your use that you can also photocopy and share with other medical professionals and/or family members.

(5) Medicare or Medicareless - If you're receiving federal retirement or disability social security benefits, you've probably noticed some big changes in your Medicare coverage in the last year. We share what's happening to patients, how the Medicare system is changing and how cash and carry clinics may be the most affordable option of all.

(6) Ten Money Saving Tips For IC/BPS Treatments & Drugs - Almost every patient is looking for ways to reduce their out of pocket costs and we share our best tips here on how to stretch your dollar.

(7) Athletics & Pelvic Floor Dysfunction - New research shows a clear connection between athletics, pelvic floor dysfunction and pelvic pain disorders. We offer five tips to help you maintain good pelvic floor health and function.

(8) Book Review: The Proactive Patient – Managing IC/BPS and Related Conditions - We give a glowing review to the latest book on IC/BPS written by Gaye & Andrew Sandler. This comprehensive resource guide is a must read for every patient.

(9) The IC Diet Project: Savor the Last Days of Summer with Some Great Grilling - Julie Beyer RD offers some great, bladder friendly grilling ideas and recipes.

(10) Your IC Awareness Month Kit - September is IC Awareness Month and we've included, yet again, another kit that you can use to raise knowledge and build compassion for IC in your community including a press release, sample proclamation, poster and fact sheet!

 

E-mail Subscription - $25 per year

Print Subscription (USA & Canada) - $50 per year

Purchase A Single Copy For Delivery By Mail $10

Purchase A Single Copy For Delivery By PDF $8

Professional Subscriptions Are Also Available

 

Student Seeks IC Life Stories

The Interstitial Cystitis Network is always happy to help undergraduate and graduate students conduct research into IC. Here's a college student in the United Kingdom who is looking for patient stories for her project "The Lived Experience of Interstitial Cystitis Patients." What's interesting about her approach is that it is entirely patient driven. There is no survey. She wants to hear directly from patients what your life has been like with IC, told in your words. Short or long, your choice of topic or concern, she'd like to hear it all. I think this is a fascinating study well worth our time! – Jill O.

- – - – - – - – - – - – - -

My name is Angie Kirkham and I am an undergraduate Psychology student at Teesside University, England. I am also a chronic UTI sufferer; I am a member of the Cystitis and Overactive Bladder Foundation

Through reading online forums and speaking to others, I have noticed some experiences and feelings which seem to be common to many UTI and Interstitial Cystitis sufferers. I have explored current research into Interstitial Cystitis, and there are many research papers into the clinical side of the condition, but very little into the lived experience of sufferers.

My observations and my own experiences have inspired me to conduct my university dissertation research into "The lived experience of Interstitial Cystitis patients". If you think that you would like to take part in my research, all I ask you to do is write an anonymous account of your experience of living with IC, and e-mail it to me at M2065367@live.tees.ac.uk.

You written account can be as long or short as you like, and can include anything that you feel is relevant to the impact and effects living with interstitial cystitis has on your everyday life. There is no 'right or wrong' response, as I am simply looking for your own personal experiences and opinions.

If you feel happy to do so, please provide the following details:

  • Your age
  • Your gender
  • For how long have you been diagnosed with IC
  • The country you live in.
    (However you may leave out these details if you like.)

Please note that any information you provide will be kept anonymous, confidential and used only for the purpose of this research. You also have the right to withdraw your account if you change your mind. For full details, please see the Participant Info Sheet. If you have any questions or would like to know more, feel free to get in touch with me on M2065367@live.tees.ac.uk . I am also happy to arrange telephone conversations, if you would prefer.

Click here to learn more about it and review the Participant Information Sheet

 

Vaginal Mesh Sling Complications and IC?

The use of vaginal mesh during pelvic reconstruction surgeries, such as for the repair of pelvic organic prolapse, is now very controversial due to a number of serious adverse events. The US FDA has issued several warnings about the use of mesh and complications which can occur, such as the erosion of the vaginal wall. Mesh has also emerged into the urethra and the bladder, causing profound damage.

One of the great challenges of having mesh surgery is removing it. Tissue grows and around and through the mesh making it extremely difficult to remove and repair. Some mesh patients have reported that their bladder symptoms began AFTER their mesh surgeries.

To support an article in our Fall 2014 IC Optimist that discusses the mesh debate, we would like to hear your story and how it may have impacted your bladder and pelvic pain, including:

  • Have you had surgery that used mesh and what was it supposed to treat?
  • What was your experience with the mesh? Did it fail? Was it successful? Did it trigger any bladder or pelvic pain symptoms?
  • Have you had your mesh removed? If so, was it difficult? successful?
  • Do you feel that your IC was made worse by mesh surgery?

    Please send your story to: jill@ic-network.com!

 

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MultiRight Low Acid Multivitamin

MultiRight Low Acid MultiVitamin We are pleased to announce that MultiRight, the low-acid pH balanced multivitamin is now back in stock. It was unavailable this Spring while the formula was adjusted to make it yet more bladder friendly. Now it's pH balanced, which means that it's pH neutral. What does that mean?? it's even LESS ACIDIC and MORE BLADDER FRIENDLY than most other vitamins on the market. If you've had flares from Centrum's and One A Day's, then you know exactly what we're talking about.

MultiRight has been tried by hundreds with sensitive bladders and most tolerated it well. The few that didn't appear to have more inflamed bladders, often with untreated Hunner's Ulcers. Unfortunately, we can't tell you if your bladder will tolerate it well. If, for example, you're in an IC flare or bladder is extremely sensitive to foods, you might want to try a half pill first and/or wait until your flare calms down.

As a dietary supplement, take one tablet daily, preferably with a meal or as directed by your physician. It is NOT formulated for use in children.

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