What’s Your IC Story?
Members of our IC Support Group were recently asked to fill out a survey about attending the support group, and their personal experience living with IC.
Marcia's IC Story
What has your IC journey been like?
My IC journey began in 2009 while vacationing with my husband in Toronto. The last day of our trip, I felt I was developing a UTI (urinary tract infection). I decided to wait to see my family doctor when we arrived back home. I saw my doctor, who took a urine sample & prescribed my usual drug for a UTI. The urine culture came back negative (normal), and the antibiotic did not help my urgency & frequency. My family doctor went on maternity leave, so I turned to my gynecologist, who I learned had retired. I did see another doctor in the practice, who had me keep a voiding diary & diagnosed IC. His practice did not accept IC patients because the disorder is too difficult to treat. Through a friend & our pharmacist daughter, I found a urogynecologist at the G.R. Women's Health center who accepted IC patients.
Since that time, I have tried numerous treatments that have helped somewhat. The doctor & his staff have been understanding & supportive during my treatments. I was fortunate to experience a two-year "remission" recently. It ended in January, & I am back trying to regain my life again. I follow the IC diet religiously & am willing to keep trying to find a remedy for my urgency, frequency & flares. Fortunately, I only experience pain when I am flaring. My overactive bladder regularly expresses itself. I recently participated in a research study & have hopes of trying other IC remedies. In the meantime, I am thankful for a cooperative doctor & staff who are willing to keep trying to help me. With continued research, I hope more effective treatments will become available for IC sufferers.
What has been the most difficult part about having IC?
Striving to live a somewhat "normal" life. Urgency, frequency and painful flares make everyday life a challenge. Also, nocturia (waking up at night having to urinate) interrupts peaceful sleep.
What do you like most about the IC Support Group?
The support group makes me realize that others share a similar journey, and some have an even more difficult journey than I do. In addition, I learn about some new ways to cope with IC.
What is the most important thing you've learned from the IC Support Group?
IC is a life-changing condition that is difficult to manage.
What is one piece of advice you'd give to others wtih IC?
Many research studies are being conducted that provide hope for better treatments. Do not lose hope. Stay informed and maintain as normal a life as possible. Follow the IC diet because that is one thing over which you have control. Pray and/or meditate.
Sarah's IC Story
What has your IC journey been like?
Since age 14 (1998), I told my doctor that it hurt to pee, I am constipated and cannot defecate without pain. I told them that I am debilitated during menstruation and I felt like something was attacking my insides or eating away at me. I have been dealing with an incredible amount of pain! I was issued a cocktail of medications. All either hurt me or did nothing. [In] 2010, I urinated blood for most of the year. [In] March of 2011, my husband got health insurance and I was able to see Dr. Jason Bennett. Instant diagnosis! He saved my life! I was an alcoholic trying to deal with my pain. [Dr.] Bennett sent me to GR Allergy and I went through the Elimination Diet. I cannot digest most foods without a negative reaction. I have IC, Vulvodynia, IBS (Irritable Bowel Syndrome), Endometriosis, Polycystic Ovarian Syndrome... my hips aren't formed right and I have nerve problems. Every day, I fight to live. I deal with depression. My life revolves around pills, shots, and the toilet. I lost my job due to IC, but I have a loving husband who takes care of me. I am so broken. I need years of physical therapy; for years, and even then, no guarantees. I'm trying. All I tell myself is "You're ok, you're ok, this is normal." I cry on the toilet way too often and carry pads with me everywhere I go. I stick to the diet like it's a bible. My journey is and will be hard.
What has been the most difficult part about having IC?
The rigid diet I must stick to to avoid even more pain. The lack of sleep. Waking up every morning knowing I'm sick because the pain is what wakes me up. Having everyone that knows me look at me like I'm broken. Incontinence. The cluster of diseases and allergies that comes with having IC is overwhelming.
What do you like most about the IC Support Group?
The girls I've met [that are close to] my own age. We have become friends and support buddies. We swap recipes and talk to each other throughout the week. We've been given tools to manage stress, and I found my physical therapist through this [IC Support] group. The instructions on diet are helpful. Knowing other girls like me has kept me from feeling all alone.
What is the most important thing you've learned from the IC Support Group?
My physical therapist - I would have never been able to make it this far without her, and the only reason I ever knew she existed was because I came when she was a guest speaker. [Also,] the diet. Very important!
What is one piece of advice you'd give to others wtih IC?
With great pain you learn great pleasure. Live your life every day and do something you enjoy once a day so you don't look back on your life and feel bitter. Life is a roller coaster, and you need to hang on, because you may be going down and spinning out of control, but it's worth it when you get to the top and put life around you in perspective. Learn to appreciate little things. STICK TO THE DIET!