Openai/696a86ed-b29c-800b-9b01-dda9d1d4ddf0

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User: I've got a friend that has 3 months of Hemorrhagic Radiation Cystitis.

I've got a friend that has 3 months of Hemorrhagic Radiation Cystitis. He has bleeding and clots, and multiple transfusions.

PuraStat was suggested, but he said he can't find anyone in his area that knows about it. He is in the US. Any thoughts on doctors that offer this, or any other therapies he should try?

Assistant: I’m really sorry your friend is going through that — bleeding with clots + multiple transfusions is the “all-hands” ver…

I’m really sorry your friend is going through that — bleeding with clots + multiple transfusions is the “all-hands” version of radiation cystitis, and it usually needs a tertiary-care urology team (the kind attached to a big academic hospital).

Why he can’t “find PuraStat people” in the US

PuraStat (RADA16) has published case reports/early experience for radiation hemorrhagic cystitis, but it’s still not a standard, widely adopted bladder treatment. The U.S. FDA clearances/indications are for endoscopic GI bleeding contexts, not specifically for intravesical bladder use — so in the U.S. it’s generally going to be off-label/innovative use, which tends to cluster at academic centers and with urologists who do a lot of intractable hematuria work. atenajournals.com

Practical consequence: a community urology group may have never used it, may not be able to source it easily, or their hospital pharmacy/committee may not approve it for that use.

How to actually find a doctor/center that might offer it (without guessing)

Here’s the fastest path I’ve seen work in situations like this:

1. Ask his current urologist for an urgent referral to a tertiary center for “refractory hemorrhagic radiation cystitis / intractable hematuria.”
2. When calling the tertiary center, ask for a urologist who specializes in: - Intractable hematuria - Radiation cystitis - Endourology or urologic oncology (often overlaps)
3. Use very specific language: “Do any of your urologists have experience with cystoscopic RADA16 (PuraStat) hydrogel application for radiation cystitis bleeding?”

Good bets to start (because they’re set up for unusual/off-label therapies and have the supporting services if things go sideways): Mayo Clinic, Cleveland Clinic, MD Anderson, Memorial Sloan Kettering, Johns Hopkins, UCSF, University of Michigan, Northwestern, Duke, Vanderbilt.

Also: contact 3-D Matrix (maker of PuraStat) and ask their medical/scientific affairs team which U.S. centers have experience with PuraStat in urology or have requested it for non-GI bleeding—companies often can’t “recommend a doctor,” but they can sometimes tell you where there’s usage/interest. 3dmatrix.com

Other therapies he should be asking about (often more available than PuraStat)

Think of this like stopping a leak: you start with the least invasive “plumbing fixes,” and if the wall is actively flooding, you escalate quickly.

1) Hyperbaric Oxygen Therapy (HBOT)

For radiation cystitis, HBOT is one of the most evidence-supported non-surgical options and can be done outpatient once he’s stable (no uncontrolled bleeding/clot retention). It’s commonly used in the U.S. through hospital hyperbaric/wound centers. amj.amegroups.org Key ask: “Can we start HBOT early for severe radiation cystitis, and where’s the closest hospital-based hyperbaric program?”

2) Endoscopic management

If there are focal bleeding areas, urologists often attempt cystoscopy with clot evacuation and then cautery/fulguration or laser techniques (depends on what they see).

3) Intravesical (bladder-instilled) agents

Common escalation options include:

• Alum irrigation (can be very effective but needs monitoring, especially kidney function)
• Aminocaproic acid (Amicar)
• Formalin (effective but higher risk; usually a later-line “big gun”) These show up repeatedly in stepwise approaches for hemorrhagic cystitis. canjurol.com

4) Systemic antifibrinolytics (selected cases)

Some centers use tranexamic acid (TXA) or similar approaches in carefully selected patients (balancing clot risk vs bleeding control). amj.amegroups.org

5) Interventional radiology

If bleeding is life-altering/refractory, arterial embolization can be considered at centers with experienced IR teams. canjurol.com

6) Last-resort options

In extreme, unmanageable cases: diversion/cystectomy is on the table, but that’s “end of the road” territory and exactly why getting to a major center matters. canjurol.com

A quick “call script” that gets him routed correctly

When he calls a big center scheduling line:

“My friend has severe hemorrhagic radiation cystitis with clots and multiple transfusions. We need urgent tertiary urology evaluation for refractory hematuria management. Does your team offer HBOT referral pathways, intravesical therapies (alum/formalin/Amicar), IR embolization if needed, and does anyone have experience with cystoscopic RADA16/PuraStat?”

That set of words tends to bypass the “routine appointment” funnel.

One safety note (because this matters)

If he’s currently passing clots, retaining urine, feeling lightheaded, or needing transfusions, this is not a “try another idea next week” situation — it’s ER / inpatient urology level until stabilized.

If you tell me what state (or nearest major city) he’s in, I can pull a short list of specific academic urology programs + nearby hospital-based hyperbaric centers to start calling.