• My ic story
I've always struggled with bladder pain, feeling like i have a uti or other infection like bv or yeast. I'd been to countless doctors and so many er visits sure i had an infection. They always passed me off with antibiotics even when finding no infection. They would dismiss my pain and just send me off with more antibiotics every time. It got so bad that i finally didn't want to deal with doctors dismissing me and knowing i would just get pumped full of unnecessary antibiotics if i sought help for a non-existent infection, that i got a kidney infection because i finally did have an infection that i figured was nothing and i let it go for too long without treatment. They blamed me for letting it get as bad as it did end up getting into my kidneys. I felt so overwhelmed and so gaslit. I was beyond fed up and defeated. It wasn't until i got a new doctor for primary care that actually took the time to listen that she was sure i had something more going on because she had urinary/pelvic issues too. She sent me to a urologist that did a cystoscope after we tried the elimination diet. It was when i finally got my diagnosis and we had talked that i knew this was something i had been living with since i was 8 or 10 years old. I always had urinary problems but never was taken seriously by my parents and never was seen by a doctor for it. So, after doing the elimination diet and enduring that so extremely painful cystoscope, i know this is something I've been living with for most of my life. Diet plays a huge role for me, as does stress. I take an antihistamine Loratadine and Rephresh probiotic daily too. I recently had a hysterectomy for my adenomyosis. That's a whole other story, but i do know it's all connected. I'm blessed to have the most loving and supportive husband. He's my greatest advocate and my rock. I'm still getting better advocating for myself. This is all a growing and learning process. Self care and taking time for the things that bring me joy are so important.
The Interstitial Cystitis Association (ICA) is a patient advocacy organization devoted to optimal care with support for people affected by interstitial cystitis/bladder pain syndrome (IC/BPS). IC/BPS is a chronic pain disease that is not well known by the public or even healthcare practitioners, yet millions of Americans suffer from it. The primary symptom of IC/BPS is excruciating bladder pain, and secondary symptoms include urinary urgency and frequency. Many patients suffer for years without a diagnosis and miss the opportunity to make important lifestyle changes that provide relief.
Join us for the ICA's Fall Fundraiser - Step Up for IC/BPS Awareness & Educational Event!
This virtual event can accomplish a lot of different goals, including:
- For those living with IC/BPS, we are providing great information on the condition from leading experts and the ability to have friends and family “Walk in Your Shoes” to better understand the condition.
- For our communities, we’re raising awareness of interstitial cystitis to help people get a better diagnosis and treatment.
- For the ICA, we’re raising funds (hopefully $25,000!!) to support the mission of improving the lives of those with interstitial cystitis across the country.
I hope you'll join me in the fight against IC/BPS, either by joining my team and raising awareness...or by simply making a donation! Every dollar helps!
The Interstitial Cystitis Association is a 501(c)(3) charitable non-profit corporation with federal EIN# 13-3292137. Contributions are tax-deductible as described by law.
