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On the healing path and some poetry

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  • On the healing path and some poetry

    Hi all,

    I want to share my story since I came to this website several times over the years, but only when I was experiencing acute symptoms of IC/bladder pain syndrome. I was visiting today to look at the doctor registry and thought I would stop by the forums - a place I turned to when I needed support. When I felt isolated, misunderstood, or at my wits end, this place gave me practical advice, comfort, and a sense of community, and I'm grateful for that.

    Backstory: the Bare Bones Edition
    I was diagnosed a few years ago but have suffered on and off with bladder pain for 20+ years. I had UTI-like symptoms but no infection. Sex was painful and made my bladder symptoms worse. I got misdiagnosed and (admittedly) did not do a great job following through with appointments, referrals, or treatment suggestions. Finally, I had a cystoscopy (mighty uncomfortable) and the urologist said my bladder looked healthy with no signs of ulcers. Then I had a difficult recovery after a surgery, which triggered a long IC flare with months and months of bladder spasms, urine retention, urgency, frequency, and pain. No medical issues were found (other than moderately hypertonic pelvic floor muscles that improved with physical therapy).

    However, in the course of all this, I started seeing a psychologist for mental health support, and I was diagnosed with PTSD. While I initially resisted this diagnosis, I think it became a watershed moment for me because I began to notice my "guarding" patterns and bodily tension, and how my nervous system was/is really up-regulated. I began to notice when I wasn't present in my body. And I began to be kinder and more forgiving towards myself, and have better boundaries in my relationships. I took an interest in learning more about pelvic anatomy and function. The puzzle pieces slowly started coming together. My psychologist was also indispensable in helping me become a better advocate for myself and my needs in medical settings. (She's a rockstar!) I began to improve my communication, my description of symptoms, my knowledge of my medical history and health conditions, and my follow-through on appointments. That made a very big difference. It certainly was not a linear path; it has been messy, squiggly, with backtracking at times, deep in the weeds, but overall, I have moved towards healing.

    Keeping in mind that everyone's path to "remission" looks different, here's some things, in no particular order, that helped me:
    • pelvic floor PT (physical therapy; multiple rounds of several sessions each round)
    • eliminated coffee/alcohol and increased water intake (IC diet made little difference for me)
    • resolved my chronic constipation issues (eating prunes or drinking prune juice) and having better bowel health awareness
    • electro-acupuncture with a trained urologist in acupuncture and pelvic pain (several sessions)
    • gentle and restorative yoga (15-30 min per day at home to down-regulate my nervous system)
    • meditation (body scans, lovingkindness or metta, and breath awareness - 5-10 min a day, as I could)
    • psychotherapy with a skilled psychologist experienced in complex health issues, chronic pain, and trauma
    • pelvic pain support group for women - I connected to a local group and went to a few sessions; so helpful
    • a low dose antidepressant to help with anxiety (my pain is worsened by stress/anxiety)
    • taking care of my general health with my diligent primary care physician (I had some other health issues to resolve)
    • medical marijuana (a light amount to help with sleep/pain, as needed)
    • taking a break from high-intensity exercise like running - I do more walking now but I have been able to resume some light running and sprint exercises again without aggravation!)
    • educating myself on bladder function and pelvic floor function, working on my sitting/standing posture and breath awareness throughout the day (I tend hold my breath without realizing it, do shallow chest breathing, and I was slouching a lot when I sat - which is tough on the pelvic floor)
    • examining my footwear and finding more comfortable and supportive shoes
    • an unfailingly supportive spouse - bless him!
    All this worked together to eventually alleviate the majority of my pelvic pain issues. At times, I felt very hopeless and defeated. I am still on my path to healing and I know it will be a life-long process. Wishing everyone all the best.


    healing yourself will ask more of you
    more rest
    more self-love
    more letting go
    more time for learning
    more space for transformation
    more honesty about how you feel
    more time developing good habits
    more courage to try new practices
    more faith in yourself and the process
    more time cultivating your inner peace
    --yung pueblo

    poet, Diego Perez (aka yung pueblo), from his book inward
    Last edited by megn2000; 09-20-2020, 01:45 PM. Reason: edited for length

  • #2
    What a wonderful story. Even though your road to recovery was a long, bumpy one, you managed to keep going. Very inspiring. IC is awful in many aspects but you seem to have found a path to live with it in the best possible way. A good support system, good docs and self-discovery are key! Thanks for sharing.