Interstitial Cystitis: A CEO’s Journey to Relief
By Heather Florio, CEO Desert Harvest
Feeling like you have a chronic urinary tract infection (UTI) that never goes away, ever.
This is an interview with Heather Florio, CEO of Desert Harvest, discussing her journey with IC symptoms, what life was like before finding out she had IC and her exploration from diagnosis to the maintenance of this condition.
What is Interstitial Cystitis/Bladder Pain Syndrome?
A chronic condition causing debilitating symptoms marrying urinary urgency, urinary frequency, inflammation coupled with chronic bladder pain, and sometimes pelvic pain.
IC/BPS is sometimes diagnosed as chronic pelvic pain, pelvic floor dysfunction (PFD), or nonbacterial prostatitis.
For many of the millions who suffer, IC can be hard to manage and live with on a day-to-day basis as a result of the debilitating pain and discomfort.
Interstitial cystitis (IC) is currently an incurable condition and there are currently only two medically recognized IC subtypes: non-ulcerative and ulcerative IC.
If you’ve ever had a UTI, symptoms are similar to an acute urinary tract infection and include pelvic pain, urethral pain, urinary urgency, and urinary frequency.
Imagine trying to hold down a job while having to go to the restroom multiple times an hour. The truth is day-to-day life is a struggle for most and running a company with interstitial cystitis was a challenge Heather Florio was forced to overcome.
Heather’s story is eye-opening and will hopefully inspire others to seek help and find what works for them.
Heather’s IC Journey
When did you start experiencing symptoms of Interstitial Cystitis?
I began having pelvic pain issues after my second child in 2003. At this point, I wasn’t at the helm of Desert Harvest. That wouldn’t happen for 9 more years. Although I’ve been involved in Desert Harvest in some capacity since its inception in 1993, I was spending most of my time behind the scenes of the music industry. I was running events and honing my leadership skills while I raised my boys and dealt with the throes of military wife life. I thought for many years all my pain and pelvic issues were just the endometriosis, uterine fibroids, and polycystic ovary syndrome that I had already been diagnosed with. It is so hard to differentiate which pain was coming from where when we as women have so much going on down there.
Did you suspect you might have Interstitial Cystitis?
I did not even realize that some of my pelvic pain was related to interstitial cystitis until 2016, thirteen years after my pelvic pain started, when I had a cystoscopy as part of my hysterectomy to rectify the endometriosis and uterine fibroids I had experienced for years. It was then I saw the connection between my chronic pain and urinary bladder symptoms and overactive bladder related to IC/BPS. Medical records aside, from there, I was geared and ready. I knew what would work for me.
Can Interstitial Cystitis or bladder pain syndrome be prevented?
Interstitial Cystitis (IC), also called Bladder Pain Syndrome (BPS) is a common condition with no known cause or cure. Since we don’t know the etiology (origin of cause) of interstitial cystitis, we truly don’t know the factors that contribute to IC/BPS. Therefore, we don’t know how to prevent the condition from happening as of yet.
I do think I might have a genetic component, as my mother’s sister also had interstitial cystitis. Twin studies and family accounts have suggested that the condition may be genetic or passed down (inherited) from one generation to another. There are genetic studies in Interstitial Cystitis being conducted with an estimated completion of 2025 at Harvard and other universities on this subject and we hope to have a more definitive answer here. But, for now, this is just my opinion with my own experience.
Because there is a high rate of misdiagnosis in IC/BPS, it has been hard to do definitive research on the true IC/BPS patient. The good news is revent research by Dr. Lenore Ackerman at UCLA found three distinct patient groups in a cohort of patients diagnosed with IC/BPS that could lead to medical professional having a subtyping model for patients. The three groups discovered in the research were a bladder-centric pain group (all the pain was originating in the bladder), a non-urologic pelvic pain group (nerve pain), and a myofascial pain group (pelvic floor muscle pain). It is theorized each of these distinct categories will have different etiologies (origin of cause) that will allow us to treat each subtype distinctly different.
How did you treat your interstitial cystitis/bladder pain syndrome from then to now?
I remember being offered options after getting out of the hospital from my surgery and me telling the doctors, “I’ve got this. I know what what to do for interstitial cystitis.” I knew my patient journey would start with Desert Harvest supplements, but I know it is not an essy course for everyone. We still run across urogynecologists, urologists, nurses, gynecologists, and the like, in addition to patients, who are not aware of the natural options for IC.
I started on six capsules per day of Desert Harvest Super-Strength Aloe Vera capsules and then maintenance-dosed down to two or three capsules per day after three months. I’ve been taking these capsules coupled with other bladder-friendly Desert Harvest nutritional supplements and skincare products consistently now since 2016.
My only addition is an extra dose or two of the aloe vera capsules if I eat or drink one of the trigger foods I know will affect my bladder lining.
I also began taking full care of my mind and body: going to therapy, doing pilates, yoga, mindfulness, pelvic PT (pelvic physical therapy) and focusing on my nutrition.
What advice would you give others going through the grey area before your diagnosis of interstitial cystitis?
Don’t give up! IC patients are on a journey, and you are your biggest advocate when figuring out the best patient treatment option for you. Always demand the best for yourself. If you don’t think you are getting the care you need, go elsewhere until you get the right care for you, and find the right kind of relief. Know that there is a high rate of misdiagnosis with IC/BPS and advocating for yourself is what will help you get the right care you deserve. Start to recognize what your pain signals are, the best way to relax your pelvic floor, and always consult your referring physician before adding any supplement to your regime. We reserve the right to be heard, respected, and bladder pain-free.
There are also some great IC educational resources for those who are seeking information like the Interstitial Cystitis Association (ICA), the American Physical Therapy Assocation (APTA), and the American Urological Association (AUA) to name a few.
My journey took 13 years, three surgeries, and trying/failing many therapies to get some pain relief. I was constantly dismissed and had to repeatedly demand care for myself. I did not give up on solving my pelvic pain.
As the CEO of Desert Harvest, what led you to create additional supplements outside of the Super Strength Aloe Vera capsules?
I will not deny that being the CEO of Desert Harvest armed me with the best and most well-informed strategy for my care and gave me ammo to help others around the world find that same bladder pain relief fast with their primary care and approach to their IC symptoms. We realized early on that those potential dietary restrictions for trigger foods led to some nutritional definiciences in many cases of IC/BPS. We also realized that most of the supplements on the market were not IC or bladder-friendly, as they had bladder-irritating ingredients or additives. That is why we, at Desert Harvest, created a wide range of targeted supplements and skincare products to answer these unmet bladder pain and pelvic health needs. In addition to other areas of focus like sexual health, urological health, and radiation oncology with a large focus on women’s health issues now and in the future, we will contunue innovating along with the research.
Is there anything else you would like to share about your journey with interstitial cystitis?
Every journey takes work, but there is always a path forward. Even though there is no known cure for IC/BPS, there are ways you can live with it Some take supplements, while others have had success with dietary changes and pelvic physical therapy. Everyone’s story is different. Find what works for you!
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