May is pelvic health awareness month and I am supporting initiatives to help raise awareness through a series of interviews with women who are living with interstitial cystitis and other chronic pelvic pain conditions.
This interview is with Natalie, who I connected with on my Instagram and who has been so kind and supportive with living the chronic illness life. Natalie is inspiring to so many of us as she navigates Lyme, chronic migraine and interstitial cystitis/ bladder pain syndrome (IC/ BPS) and does so with such grace and positivity. I'm sure you will find her story and suggestions for mindful practice very helpful.
Can we begin with you telling us about how you came to be diagnosed with IC/ BPS? Had you lived with symptoms for a long time before your diagnosis?
I received an IC/BPS diagnosis in the summer of 2016, when I was 24 years old. I had lived with pelvic pain and urinary symptoms for years by that point, but they were never severe enough to dramatically impact my day-to-day life or urge me to pursue advanced medical care.
In July of 2016, I started to experience a sharp increase in bladder pain; mostly presenting as painful urinary frequency and bladder spasms. Within the span of a few weeks my symptoms escalated intensely and I was having trouble sleeping and walking due to the extremity of my pain and discomfort. When this flare began, I was treated by my GP several times for a UTI (which interestingly I had never had before) and was reassured by many around me that what I was experiencing was “normal” and would go away in a few days once I was on antibiotics. After several weeks of trying to “treat” this “uti” that “wouldn’t go away” – I was referred to a urogynecologist.
Through that doctor, I was diagnosed with IC and began being treated with daily preventative medication. The symptoms, appointments and treatments were painful and invasive and I was suddenly thrust into a world I desperately wished I could find a door out of. Over the next several years, my symptoms have ebbed and flowed with severity and intensity, and I have been on a journey of untangling the web of how IC/BPS relate to my other chronic health issues.
I know now that a chronic lyme infection in my body is likely causing some of my pain and irritation, and have explored many avenues of treatment including pelvic floor physical therapy, daily preventative medications, vaginal suppositories and acupuncture.
In 2019, I had my first cystoscopy with hydrodistention, which gave us more questions than answers about my bladder pain.
I remain hopeful that I will continue to get better management of this condition and am so grateful for this network of other IC/BPS warriors around the world who give me so much encouragement to keep going.
How do you manage your condition? Are medications or bladder instillations helpful? Are there any lifestyle measures that help you?
Currently, I manage my condition with daily preventative medication, acute rescue meds, pelvic floor physical therapy and non-pharmaceutical pain relief (special shout out to my hot water bottle!).
After several years of living with this condition, I have come to know my body better and adopt certain lifestyle modifications when I am flaring. For example, limiting my liquid intake and types of liquids can be hugely helpful during flares. I continue to look for dietary triggers – but so far I haven’t been able to identify much.
Every body is so different, it is really a process to figure out what is and isn’t helpful for your particular bladder!
Beyond your urologist are there are any health professionals that you feel have been integral to managing your IC?
My IC is closely monitored by both my urogynecologist and my LLMD (lyme literate medical doctor). Many lyme disease patients experience IC symptoms; and I work closely with my care team to try and assess how my lyme treatment is positively or negatively impacting my bladder condition (which is a near constant dance between trial and error).
Mindfulness, gratitude and self-compassion are very important to your self-care. How did you begin to use these tools to help your healing?
I arrived to mindfulness, gratitude and self-compassion when I was at one of the most difficult rock bottoms of my journey with chronic illness. I had just been forced to take medical leave from my first full-time position, was trying painful and invasive treatments that were not helping and felt utterly consumed by the health chaos that was defining my world.
As much as I’d like to look back on my mindfulness journey as one that was born out of divine timing and “feel good” vibes – it was more of a desperate attempt to find some peace through what felt like unsustainable pain.
However, I do believe that mindfulness entered my path at exactly the moment it was meant to. I was so demoralized by my health issues and the young 20-something life circumstances I had found myself in that there was truly nothing I wasn’t willing to try to get “back on track”. In this endeavour, in 2016 I doggedly committed to a daily meditation practice on the Calm app, and eventually, that practice was what opened the door to gratitude, self-compassion, acceptance and rediscovering my own resiliency.
Mindfulness gave me the gift of choosing how I respond to my circumstances, and early on after this realization I made the decision that I wanted to choose to be a person who loved my life more than I hated my pain. All of my work since that day has been in pursuit of finding love, joy, peace, ease, grace and acceptance; right here in the middle of struggle, right here in the middle of life.
Are there a few simple practices or techniques you could share with people new to mindfulness?
Yes! The “top 3” resources I would share to a mindfulness newbie are breathwork, guided meditation and gratitude practice. At the core of practicing mindfulness, connecting with your breath comes up over and over again. Beginning a “breathwork practice” can look as simple as committing to taking a slow mindful inhale and long relaxed exhale 3x a day. I like to set a timer on my phone to remind me to do it throughout the day.
As for guided meditations, I always recommend the Calm app (Headspace and Insight Timer are other great resources). This app was where I began my mindfulness journey, and truly transformed my life. The daily calm meditations are all 10 minutes and can be followed along by anyone, regardless of your “meditation level”.
Lastly, I always recommend a gratitude practice. Gratitude has been one of the most powerful ways I have reframed my life and my circumstances; I’ve learned that the more I look for the good the more I find it. Even on my hardest days, gratitude is an anchor that I can now rely on. But it took time to develop! Start with writing a list in your phone or notebook every day for 3-5 things you are grateful for. When that feels doable, stretch your list to 10 things. “Where your attention goes, energy flows” – and I have truly found that when my attention is directed toward things I can be grateful for, that energy flows right back into my heart and life.
What are your hopes for the future with your pelvic health condition? Are there any treatments or lifestyle measures you hope to try?
In my case, I hope for more clarity around my pelvic health condition and pain. As I untangle the web of IC/BPS, lyme disease and suspected endometriosis – I know that finding this clarity is a marathon, not a sprint. It is easy to slip into impatience and frustration around not understanding exactly what is causing my pain and how I can fix it, but I am trying to lean into the belief that with each passing day I am getting closer and closer to seeing the “bigger picture” and learning better ways to manage my right now.
Thank you to Natalie for sharing her story and the positive benefits mindfulness and gratitude practice can bring us when navigating chronic illness!
Check out the other interviews that are part of this series for Pelvic Awareness Month:
And more on interstitial cystitis and pelvic health:
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Please follow the advice of your doctor as to all medical treatments, supplements and dietary choices, as set out in my disclaimer. I am not a medical professional, and this post, as well as all other posts on this blog, are for informational purposes only.