How do you find the strength to keep living when you know you have an incurable illness and have to live with pain every single day?
How do you accept that this might be your life for years or even forever? What it will be, suffering life forever, for what..
Hi everyone.
I’m a 28-year-old man, and I’ve been living with chronic pubic pain for the last year and a half.
I’ve tried almost everything. I went through all the usual tests, and nothing explained my pain. I’ve seen multiple pelvic floor physical therapists, had pelvic floor therapy, nerve blocks, muscle relaxants, different antidepressants, pain medications… nothing made any real difference. I feel like I’ve gone through everything from A to Z.
At the very end of my journey, I had a cystoscopy with hydrodistension. I had two regular cystoscopies before, but they showed nothing. This time, after the hydrodistension, the doctor found multiple glomerulations (bleeding spots) all over my bladder. Basically, my whole bladder was bleeding. Based on that, he diagnosed me with IC/BPS (interstitial cystitis / bladder pain syndrome).
During the procedure, they also took biopsies. The biopsy confirmed chronic inflammation with many mononuclear inflammatory cells in the tissue. It also showed that the bladder lining is peeling away. They checked for cancer and precancerous changes, and thankfully everything was negative.
The current theory is that my bladder lining is damaged, so urine can irritate the tissue and nerves underneath, which causes the pain.
So now, for the first time, I actually know what I’m dealing with. The diagnosis was confirmed by both the cystoscopy and the biopsy. From now on, I’ll be focusing on treatments that target the bladder itself.
I know there isn’t a cure, but I’ve read that many people reach remission, or at least get to a point where the pain is well controlled and no longer affects their daily life. That’s what I’m hoping for too.
I’m especially looking for people who have the same phenotype as mine. By that, I mean not the muscle-dominant type, and not Hunner’s lesions. My phenotype is glomerulations together with damage to the bladder lining.
If that’s you, I’d really appreciate it if you could leave a comment or send me a private message.
I’d love to know:
What treatments helped you?
What didn’t help?
What foods or drinks make you feel better or worse?
Is there anything you wish you had known earlier?
Please share everything you can, as if you were preparing me for a battle against this IC/BPS monster.
I would really appreciate hearing about your experience.
Thank you.