I'm facing a decision about more surgery, so I thought I'd go along to an endometriosis support group, expecting it to be helpful. I found that there was a competition going on as to who had the most pain, who'd had had the most operations, who'd had the biggest cyst... One woman even said she wished she had cancer because then she'd get some sympathy from her friends! Be careful what you wish for. I haven't gone back. I'm wondering whether to try another group or if this sort of thing commonly occurs and is there any value in it?
What makes a good support group? - Pelvic Pain Suppo...
What makes a good support group?
Hi Socks
I have never really been keep on visiting support groups, it reminds me of when my children were babies and the competition at the local clinic to see whose baby was the biggest and best!
At the end of the day its your decision. Its stressful going thru any surgery and you have to feel 100% sure its the right thing to do. Maybe your not ready yet to make that decision yet.
Fancy saying that about cancer...
I hope not all support groups are like that ! I used to run one, we tried to make it informative and supportive and regularly had guest speakers. I am sure we offered good advice to those attending to help get the best treatment.
I know what you mean and have heard similar things from other people - someone once told me a group they attended were discussing who had the biggest scar ! I ran an endometriosis support group for years - it was an independent one though and nothing like what you've experienced, we had speakers, ran a campaign to raise the profile of the disease, gave a lot of input into the endometriosis guidelines which were updated in 2006. In fact it is that group that has grown into this charity, website and all of the other things we do and are involved in such as sessions about pelvic pain for undergraduates and other health professional education sessions, input into research etc etc.
Maybe there'll be enough people in your area in due course on here for you to meet up and do things as you'd like to.