2+ years of chronic bladder urgency & mystery symptoms

Posting on behalf of a family member, 28F

Her full medical history would be too long a post but we're desperate and turning to Reddit. Started with chronic urgency, and after a year of medication and PFPT, had interstim device placed. Device worked for about 6 mos then suddenly stopped. Chceked the leads, tried infinite programs, nothing.

It's been about a year since then, and she's basically felt like she's had to urinate this entire time. She has extreme hypertonic pelvic floor muscles, and goes to PFPT twice a week. The multiple PTs she's seen say they've never seen such tight muscles.

Here's 3 mystery facts that we feel have to lead somewhere:

• heat gives her relief. Hot showers, heat pads on her lower back and pelvis. However, after prolonged use, it's creating dermatological problems.
• She also gets instant relief by taking her hands and applying upward pressure to her pelvic floor area. Obviously she can't walk around like this.
• Over past year, she's developed an incredibly painful rash. She's been tested for every allergen under the sun and tried almost every topical cream available. Nothing treats it.

Is there anyone here who can help? I'm more than happy to provide more information. This is made all the more complicated that she has an intellectual disability and a history of physical medical issues...I can't stress enough how desperate my family is. Thank you.