Urinary Fistula challenges

[IamJay]

Hi folks. I'm so happy to have found this group and haven't heard of Pelvic radiation Disease before.

A quick recap of my health issues...

I've had malignant melanoma in my vulva and have had several surgeries including a full pelvic Exenteration leaving me with a colostomy and a urostomy. I've had immunotherapy, brachytherapy and external beam pelvic Radiation.

The cancer has been gone for almost 3 years now and the radiation damage has created many issues including damage to both ureters requiring stents in both and I have a fistula on my left ureter that leaks out through a hole in my vaginal stump.

I am getting constant UTIs which has caused my right kidney to only function at 13% and I am anemic so my energy is very low.

I know I can manage the anemia by taking iron supplements which I have just started but the fistula leakage is taking its toll on my mental health as I am always wearing a pad and hate the sensation of constant leaking. 🫤

I've been told by several surgeons that because of pelvic scar tissue and radiation damage it is too risky to do more surgery.

I really thought that the new left stent would help but now I'm not so sure.

A couple of specific questions for the group...

If you have a fistula that leaks constantly how do you cope?

Has anyone had success with hyperbaric oxygen therapy to help heal radiated tissue?

Thanks so much for listening.

J