Anxiety and Interstitial Cystitis Often Co-Exist

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By Jill H. Osborne MA, ICN President (June 19, 2014)

It might surprise you to learn that anxiety is a strongly related condition to IC and pelvic pain. It was the human genome project which made the connection. Researchers trying to determine which section of the human genome correlated with anxiety discovered that a large, distinct subgroup of anxiety patients also had interstitial cystitis. Urologists then confirmed that most of their IC patients also struggled with alarming levels of anxiety. Subsequent research studies now suggest that there is a genomic linkage between the two conditions.(1)(2)(3)

The end result is simple. Most IC patients struggle with varying levels of anxiety. Some report that they’ve always lived with anxiety disorder and/or that other members of their family also struggle with anxiety. Other patients report that their anxiety developed after the onset of their bladder symptoms, suggesting that pain, fear and insecurity about the future might be driving their symptoms. In either case, you certainly aren’t alone. Anxiety disorders affect about 40 million American adults age 18 years and older (about 18%) in a given year, causing them to be filled with fearfulness and uncertainty.(4)

Medical anxiety is common with some patients fearing visiting the doctor, having tests and trying new treatments. It’s fair to say, as well, that those patients who are treated irresponsibility (i.e. such as having a painful hydrodistention without any anesthesia) could experience some post traumatic stress disorder. It’s certainly common for pelvic pain patients to fear activities and/or events that could trigger more pain, such as riding in a car, taking a vacation where medical care might be limited, traveling or intimacy.

But, when anxiety starts to dominate daily thoughts and/or prevents someone from receiving good health care or enjoying life, it’s time to do something about it. There’s no shame in having anxious thoughts but we each have the responsibility to learn anxiety management skills so that we can live a full life and don’t become isolated from family and friends. There are many resources that can help!

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My Story With Anxiety

Jill Osborne(By Jill Osborne, ICN President & Founder) We all have our own stories: unique, varied and very legitimate. My anxiety began at a very young age, triggered by a violent young man in my neighborhood who eventually became a rapist and murderer. The child of alcoholics, this young man taught me that I was very blessed to have a safe and loving family.

Like many young women in college, I experienced sexual harassment and workplace bullying. After two stressful and anxious years in the summer job from hell, I learned that it was okay to walk away from jobs and people who didn’t treat me with caring and kindness.

I developed panic disorder in my early twenties while working for the Social Security Administration, a surprisingly violent working environment. We struggled daily with office security due to the many violent outbursts from mentally ill clients. One day I was attacked at my desk and saw, first time, the casual disregard of senior management for the safety of their staff. I gave notice and decided to go to grad school. (Ironically, they moved to a new office and installed bullet proof glass just weeks later.)

The downside of what was basically the third attack of my life was that I developed severe anxiety. I was afraid to leave the sanctuary of my home. A simple trip downtown was often overwhelming. It was compounded by the fact that I was also developing many of the related conditions to IC, particularly IBS. My doctor saw that I was miserable and suggested that I take a class called “Phobease.” This simple six week class changed my life and I haven’t had an anxiety attack since. I hope that some of these suggestions will help you if anxiety is dominating your life.

Learn About Anxiety Disorder

Here are some excellent interviews and articles!

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Take An Anxiety Management Class

Almost every community has either a hospital or medical center that offers classes that could help patients struggling with anxiety disorder. I found mine at Kaiser Permanente and was surprised to learn that most of their classes are available to the general public for a very modest fee. Not every course teaches the same program but each class the potential of giving you skills that will help you manage, reduce and hopefully prevent future panic attacks. I took the Phobease class developed by Dr. Howard Liebgold, a physician who also struggled terrible with anxiety and phobias.

Though I will admit that it was hard to walk into the room the first time, I found the classes incredibly comforting. It was great to meet so many “normal” people who, like me, had faced adversity and who really knew what life was like with anxiety. The class had many different types of anxiety. I was surprised to find that two of the members were actually lottery winners who found that they were more worried and anxious about their home. One person was afraid of water because they had nearly drowned as a child. Another was afraid to drive across bridges. We met an hour a week for six weeks, with a great instructor and by the end of the course we had all made significant progress. I found it life changing.. the skills I learned I still use today and haven’t had a panic attack since the class.

Find an Anxiety Specialist

If your anxiety is severe, then seek the help of an anxiety specialist who may be able to prescribe some medication and/or give you behavioral strategies that can reduce your anxiety. You shouldn’t worry that talking with a therapist will involve intense psychoanalysis of your childhood, etc. etc. Their #1 job is to help you learn skills that you can use when you start to feel overloaded. But, if other issues come up that are troubling you, then why not talk about them. If not now, then when? Would you rather waste another ten years afraid to live your life?? Ask for help, take some action and you may be surprised at how much more satisfying your life can be.

There are non-profit organizations around the world who help patients find care. In the USA, The Anxiety and Depression Association of America has a “Find A Therapist” search feature on their website!

Conclusion

Motivational speaker Jack Canfield has a slogan that I live by: Ask => Action => Satisfaction. He say’s that you can’t get satisfaction, until you take action, but you can’t take action until you ask a question. Simple and it works! So, in my case, I finally had the courage to ask my doctor “What can I do about this anxiety? I’m tired of living my life this way.” He encouraged me to take a class. I took that “action” and, six weeks later, I finally got some relief and satisfaction.

I find that this works really well if I find myself worrying about something. If I have something physical going on, such as an unusual mole that I thought might be skin cancer, I immediately make an appointment with my doctor to “ask” if this was a problem. I got it treated and that worry was resolved. Another thing that I could easily obsess about is dental appointments. Rather than allow myself to worry, I call the office and see if they have a cancellation so that I can easily walk in without worrying for days. For that matter, if I need any type of medical procedure done, I always take the first earliest appointment rather than waiting it out and allowing the anxiety to build.

The hardest part about having anxiety and IC is that it can trigger an IC flare. Tell me I have to get on a plane tomorrow, and I’ll have both an IC and IBS flare the night before. It’s happened dozens of times and, yes, thanks to the anxiety classes, I can get to the airport and on to the plane. But, I haven’t learned how to stop the stress flare the night before. I just ride it out and use my MANY anxiety management skills for the journey.

But, unlike when I was a teen, I now know that I didn’t cause my anxiety. It’s not my fault. In fact, both IC and anxiety disorder run in my family and that’s OK. I understand that my nervous system is more reactive to stress. I think that’s why those early life events (i.e. bullying) were so overwhelming at the time. Today, I embrace the woman I am, including my sensitive side. I care for my body. I practice good stress management. I try to live a healthy, happy life. Yes, it’s annoying that my brain can so easily visualize the negative rather than the positive, but through positivity and filling my home with happy, encouraging things, I’m doing pretty darn well. You are not alone, my friends! Be willing to ask the question, take the action and you, too, will receive satisfaction! Blessings! Jill O.

References

(1) Weissman MM. et al. Interstitial cystitis and panic disorder: a potential genetic syndrome. Arch Gen Psychiatry. 2004 Mar;61(3):273-9.
(2) Chung KH, et al. Bladder pain syndrome/interstitial cystitis is associated with anxiety disorder. Neurourol Urodyn. 2014 Jan;33(1):101-5.
(3) Subaran RL, et al. A survey of putative anxiety-associated genes in panic disorder patients with and without bladder symptoms. Psychiatr Genet. 2012 Dec;22(6):271-8
(4) What is Anxiety Disorder. National Institute of Mental Health. Accessed June 19, 2014.

About the Author:

My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders. As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life. An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions. With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.

One Comment

  1. nailz June 22, 2014 at 3:28 pm

    I’m a fibromyalgia and ic patient and I’m SICK of anxiety and not being able to get into a relaxed state. It’s been years since I’ve awaken and felt refreshed! I always wake with knotted buttock muscles and clenched jaws( have to wear a bite splint every night and have literally bitten a hole through it). Any suggestions would be appreciated .

    Have tried chamomile tea, valerian, lavender essential oil, melatonin, etc. to no or very little avail. Help!

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