locating PRDA in USA unsuccessfully

[USAPRDA]

I am so grateful to have stumbled on this site while surfing pelvic radiation adverse effects on gut bacteria and weight gain. I had chemo/ pelvic radiation in 2013 and the side effects have been a roller coast ride. I have not been able to find any support in USA and I am a PhD in epidemiology from an ivy league university! Any pointers on local support groups welcome. My encounters with my MDs have demonstrated a pervasive ignorance and general dismissive attitude. I so often hear how women are subject to age-related changes......not PRD. Thank you to those who organized this online community. I hope to find some community solutions to PRD effects that seem to pop up after 10 or 20 years. Best wishes to all for 2023! This is a great research group.

[Perido]

FYI the PRDA has the following website: prda.org.uk

[Mariecapp]

Welcome to the group. I live in the USA. I am 6 yrs cancer free. The only group that I have found here is the anal cancer foundation. They have their own website. I contact them to explain the side effects. They also explained why radiation is administered from the front of the body instead of the back because anal cancer is on the posterior side so doing it from the back would cause less damage to our organs. The Dr's in the USA are not that familiar with PRD, at least that is what I have encountered. Best to you.

[chif in reply to Mariecapp]

I'm 9 years out, live in Spain last 2 years. USA has little on prd, so I also follow the anal cancer foundation. It's a shame, but the prd just never goes away, I'm dealing with incontinence now and inability to feel my bladder when it's full. So depressing..... The price to be alive...

[Mariecapp in reply to chif]

I agree with you, it never does go away. I am 6 yrs post cancer treatment and my PRD has progressively gotten worse. I am learning what I can and can't eat, but there is a long list of what I can't eat. No lactose, no wheat, no green veggies, nothing with seeds in it either. I do use peppermint capsules one hr before a meal and I also have to use immodium, but too much of that makes me constipated. I also still have very painful BM'S and sometimes I bleed. Hang in there. We are all in this together. The anal cancer foundation has been helpful also.

[USAPRDA in reply to chif]

have you tried something like TENS stimulation of nerves to reconnect with muscles. There is a USA company INNOVO, myinnovo.com/ I tried it and it has helped reconnect my brain with my nerves and muscles.....

myinnovo.com/pages/how-it-w...

"What is INNOVO? It’s one smart pair of non-invasive, shorts that you wear for 30 minutes a day. Our FDA-cleared technology takes the guesswork out of doing those tricky kegel exercises. Build your pelvic floor muscles over the course of 12 weeks, safely and from your own home."

hope it helps but I continue to search of other methods as well