You’re not alone.
You’re understood.
From struggle to strength:
life with Interstitial Cystitis
For several years, I experienced significant symptoms from Interstitial Cystitis (IC). While I understood my own burden, I realized that the healthcare system, patient organizations, and authorities often do not fully recognize the everyday challenges of living with a chronic condition. Coping with IC goes beyond medications or surgeries, and sharing these experiences is important.
Timeline
Year 2004
Hospital Diakonessenhuis Utrecht
– Scopy, bladder instillation
– Medication: Anti-biotics, Emselex
– Medication: Anti-biotics, Emselex
Year 2005
Hospital Diakonessenhuis Utrecht
– Scopy, Röntgen
– Medication: Anti-biotics, Emselex
– Medication: Anti-biotics, Emselex
Year 2007
Second opinion: VU University Medical Center (VUmc) Amsterdam
– Röntgen, Echo, MRI scan
– Medication: Anti-biotics, Emselex
– Medication: Anti-biotics, Emselex
Year 2008
Bladder extension: Diakonessenhuis Utrecht
– Pelvin floor therapy, Scopy
– Medication: Anti-biotics, Emselex
– Medication: Anti-biotics, Emselex
Year 2009
Third opinion: University Medical Center (UMCG) Groningen
– Echo, Scopy, Psychologist, Urodynamic examination, Laboratory blood tests
– Medication: Toviaz, Pentosan, Hydroxyzini, Pentosan (Elmiron)
– Medication: Toviaz, Pentosan, Hydroxyzini, Pentosan (Elmiron)
Year 2010
Medication Cocktails
– Medication: Toviaz, Pentosan, Hydroxyzini, Pentosan (Elmiron), Lyrica, Amitriptyline
Year 2010
Start Personal Health Plan
Special diet, supplements, exercise and mental support
Year 2016 - 2026
Enjoy Life Again!
Free of (nerve) pain, Sleep well, Work again, Off Medication!
I got IC in 1990’s starts on strong pain meds 1995 still on them. I hv multi chronic illness now IC , pelvic pain, severe chronic low back pain daily constantly, runs down both my legs , right leg worse cause I hv broken ankle 2x and leg severe now severe constant pain , stomach pain daily, chronic headaches daily. Not able do anything but get up in morning go to reclincer till x for bed in constantly pain daily with one thing or another daily!! Need advice Help!!
💚 I’m so sorry you’re dealing with so much pain every day. With several chronic conditions alongside IC, it may be worth asking your doctor for a comprehensive review and support from a pain specialist. Everyone’s situation is different, so finding the right medical support is important. Wishing you strength and hopefully some relief soon.