Hello, 

My story begins during the summer of June 2018. It’s a common story when it comes to the diagnosis of Interstitial Cystitis. Patient (usually female, but occasionally male) begins to show “bladder” symptoms. Urgency, frequency & pain. Patient goes to the doctor. Doctor MAY run a basic urine dip stick test. Everything comes back normal. Patient is sent home. Try Azo they tell us. Take Tylenol or Advil. Drink cranberry juice!! Drink more water!! Rest! They offer their “medical advice”. We return again & again. Some of us end up in urgent care rooms & ER’s. Where the vast majority of staff know absolutely ZERO about our condition. Nor will most administer proper pain medication to us. Maybe we have an actual UTI at some point & are given antibiotics. Eventually we all end up with the same diagnosis. IC/BPS. We’re all told the same thing. “There’s not much I can do for you. Change your diet. Limit stress. See a therapist. Try these meds” <enter barrage of crazy meds & side effects> Oh & there’s always the fantastic bizarre “treatments”. Everything from the ‘Interstim’, ‘Hydrodistention’ to ‘Botox’. 

At no point in time do 95% of us, hear the word, “phenotype”, used at our doctors office to diagnose an IC/BPS patient. So we end up bouncing from urologist to urologist. Or we search for urogynocologists. Specialist after specialist we search for answers to end our suffering. We try supplement after supplement. Spending thousands of dollars. We desperately attempt to solve our own mysterious medical issues. We become little researchers, and self proclaimed scientists. All in an attempt to relieve ourselves from the agony that is IC/BPS. Only those who suffer this debilitating agony understand what a vicious monster this disease is. 

The misery of having to void every 5-10 minutes. EVERY DAY! ALL DAY! The burning fire in the bladder, in the urethra that is so relentless, days go by without the patient even noticing anymore. The nights that seem to stretch for days due to the pain we’re left in because we’re also not properly medicated. Can you imagine feeling like you’re in active labor every day? Ask anyone who has IC/BPS. Chances are they’ve felt it. Pain becomes so severe, so encompassing, so debilitating, it leaves the IC/BPS patient completely devastated in every aspect of their life. Physically. Emotionally. Mentally. Spiritually. 

So what’s the solution? Well ONE solution would be a correct diagnosis from the beginning!! Imagine that?! Imagine a world where a patient walks into a urologists office with symptoms & is asked very specific questions in order to place the patent into a category. A phenotype of IC/BPS. Dr.Christopher Payne has created exactly that. It’s being used, rarely, yet successfully. The IC Network is already speaking out on the phenotypes with the founder Jill Osborne creating a video and writing an article on his work. So why hasn’t the AUA updated their guidelines yet to reflect these new IC/BPS phenotypes? Why has the last update been in 2014 when there’s been a cascade of research on the effectiveness of phenotypes the last 5 years? Good question. Let’s ask them. 

Let’s also ask them to include the IC/BPS phenotype method as a mandatory guideline for all urologists in the diagnosis of every IC/BPS patient from now on! The old ways don’t work. You’ve seen it. You’ve LIVED it. What we need is a CHANGE! Dr.Payne’s phenotyping method is just the change we need to make a start towards healing IC/BPS. We can make a difference for future generations by implementing this method at the point of diagnosis.

I need your help. Please sign this petition. Please send it to everyone you know with IC/BPS. Or anyone who knows someone with IC/BPS. The AUA is having their annual meeting May 3rd-6th. I want to gather as many signatures as possible this week & email this petition to the AUA as well as other various non-profit IC/BPS organizations that will help us speak out. As we don’t have a release date for when the new guidelines will be published we need to act fast. 

My name is Libby. I have Bladder Pain Syndrome, Phenotype #3 & #5, possibly #4. I have severe PFD & possible PNE. My main symptoms currently are severe lower back pain & pelvic pain, along with occasional frequency as well as less often urgency. My current doctors & pelvic floor physical therapist are helping me figure out the 3rd one by referring me to see a top rated specialist, as well as having various tests run. Only catch is-I have to wait until June 20th. Had I known what my phenotype was back in June of 2018, instead of learning about it in February of 2019, I would’ve been saved 8 MONTHS of needless tests & the money spent on them. The 8 months of excruciating, debilitating pain, procedures I probably didn’t need, emotional & mental agony, etc. 

Now I do everything I can to pass along the research information I’ve collected to everyone else, as well as help others learn what their phenotype(s) are as well via my Facebook page, Instagram & Twitter ‘The Intuitive Advocate’. My full journey documentary is on my YouTube channel under the same name. 

Thank you for your help. 

Together, we can make a difference for the future of IC/BPS