The first CPPS/CP/HF support group took place on Thursday 27th September 2018. It was very humbling to see a very brave group of men meet together for this, the first monthly support group for men suffering with Chronic Pelvic Pain Syndrome, Chronic Prostatitis and Hard Flaccid.
This initial meeting gave attendees a chance to have a say in how future groups will be run. We outlined rules of engagement for myself as coordinator/mediator and members:
Guidelines of engagement and conduct for Karl (group co-ordinator/mediator)
- Not to sell products or services
- To provide impartial advice and support
- To fairly moderate the groups
Guidelines of engagement and conduct for members (and Karl)
- To be non-judgemental of others
- To provide specific details about oneself as and when/where comfortable
- To be honest with each other and yourself
- To respect others in both talking and listening
Future CPPS/CP/HF support groups
I also asked members about the content for future meetings and whether they felt guest speakers were of importance to them.
The group agreed they would like guest speakers but these will not be every month/meeting. Instead these will be based on some of the topics covered (see below). If there is a guest speaker they will present for 40-45 minutes and allow the remaining time for group chat/discussion/support. The presenters will not be allowed to sell any products or services
The group would like themes for each session to focus conversation. These will include:
- Lifestyle considerations
- Pain Management
- Activity
- Exercise
- Nutrition
- Personality factors/traits
- Relationships – family, friends, work
- Sex
- Recovery
- How to read a research paper
The focus will also be around evidence based medicine or research papers to support discussions and in turn provide a point of reference
The next CPPS/CP/HF support group will take place on Thursday 25th October in London Bridge. For full details please click here
Testimonials from CPPS/CP/HF Support Group attendees:
“You could really tell everyone was getting a lot out of it and it was very re-assuring meeting and talking to other men going through the same issues”
“You only needed to say a few lines about your own experience and others would immediately understand your predicament – through own insight.”
“I’ll definitely be attending each month!”