Walk for an IC Cure!
Did you know that there are more than 12 million people in the US who suffer with Interstitial Cystitis/bladder pain syndrome (IC/BPS)? IC/BPS is recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, often associated with urinary frequency (the need to go often-some patients pee 50-70 times per day) and urgency (the strong and urgent need to go pee). It is a painful and debilitating disease of the bladder. IC/BPS is a chronic disease and at this time there is NO cure.
Why am I walking? I am walking for the 12 million Men and Women in the US alone, including Myself who suffer from this truly awful disease! I am walking for a Voice, I am walking so we can spread awareness and I am walking for a CURE!!
I want to share My personal IC story and journey so far with you. I was diagnosed with IC in June 2016 and leading up to my diagnosis in the Spring of 2016 I ended up in the ER over a dozen times for severe pelvic pain and the Doctors kept treating me for UTI’s and different type of Pelvic infections with antibiotics and I never got any better. I was lucky that I had a good Primary who took notice and said something wasn't right and referred me to a specialist, where I got my official diagnosis of Interstitial Cystitis. (For many IC patients it can take years to get a diagnosis)
What does IC feel like for me? The pain for me is my worst symptom and a daily battle it can range from moderate to severe. I will wake up feeling good and it progresses throughout the day. There are days when I can't get out of bed or walk due to the pain. In some research IC pain is in the top 10 most painful conditions in the world. I also deal with pressure in the bladder where it feels like my bladder is full all the time. This causes me both urgency and frequency. The urgency can be so bad where you can barley make it to the bathroom or you just don’t make it. The frequency can cause me to use restroom on a good day every hour or so and on the worst days I can go every 20 minutes. Not only does IC cause physical symptoms it also causes mental symptoms.
What are treatments for IC? Thats were IC gets complicated because there is not a one drug fits all for IC. At this time there is only 1 FDA approved drug for IC ...This 1 drug Elmiron can take up to 4-6 months to even see results and if it works for you it can be extremely expensive for most even with health insurance(it can cost 300-700 a month for just 1 medication). There are other forms of treatments including; other medications, Bladder installations, surgical procedures, and other forms of treatments. There is no one treatment that works for everyone. It is usually a combination of treatments that are needed to to get relief, it's a lot of trial and error and you must be patient and you must educate yourself and be your own advocate.
What have I tried? I have had 3 surgical procedures that I have had success with but that means having surgery every 6 months and it isn't a complete fix and it is a rough recovery. I have had many bladder installations that were extremely painful and I would only get relief for a short time. I have tried many medications; some worked temporarily and some I am still on. My Doctors and I are currently attacking this beast from multiple sides. My doctors and I agree that this is the best way to battle the IC. My team of doctors includes; a Urogyneclogist, Pain Management Specialist, Physical Therapist, Personal Therapist, Group Therapy, a specific diet and some natural therapies. Even with all of this that we are trying there are still days and periods of time( we in the IC community call these flares). The pain and other symptoms can get so bad that I end up in the ER and the hard part about going to ER is some Doctors and health care professionals know very little about IC and the information they do know tends to be outdated so I have been seen as a drug seeker and that is so far from the truth I just want relief from the pain!
IC is not only physical symptoms but mental as well. So I am not only treating a physical condition I am treating the mental side of it by being in personal and group therapy. Durning the last 2 years I have suffered from depression and anxiety. This is because IC can severely affect quality of life and it has affected mine. It has not only has effected mine it has effected my husband Ronny’s and our family and friends. I don't like to make plans in advance because 1. I don't know how I am going to feel that day and 2. I don't want to let people down when I have to cancel. I don't like to be far from home or places I am comfortable at because I never know what to expect with IC, everyday is different. It can be hard for people with IC to hold down a job and for the majority of the last couple of years I have not worked. I can't do many of the things I used to enjoy before IC. IC has caused me to have dark days and feelings of just wanting to give up because I don't know how to handle another day of it. I feel so much guilt because of the IC. I feel guilty for not being the person I want to be, the Wife, daughter, sister, or friend I really want to be. Some of hardest moments of this disease have not been the disease itself but how people look at me or what they say or don't say! I have been told I need to suck it up and be an adult.I have been told well you don't look sick. I have been told you are too young. I have been told it's all in your head. Drink some cranberry juice and you will be fine
I don't know what to say to that , so I say nothing.
There is nothing that I can do to make IC go away, all I can do is learn to live with it and work with my team of doctors and therapist to no matter what live my best life. I am fighting this disease with every part of me! I want my life back! The IC will not win!! I am a IC Warrior!!
**ICA relies entirely on donations.The ICA is the only nonprofit charitable organization dedicated solely to improving the quality of healthcare and lives of people living with interstitial cystitis (IC). Your contribution is greatly appreciated.Thank you for supporting ICA!**
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