Health Organization for Pudendal Education

GAIN (Gynaecological Awareness Information Network) based in Perth Western Australia. www.gain.org.au
Volunteers driving awareness and education of gynaecological conditions.

Hi Catherine,
I am so appreciative of your post and the information regarding GAIN. Are you aware of any support groups near Sydney, NSW. After attending the Chronic Pelvic Pain Forum last week I can understand the value of having the opportunity of speaking with others regarding PNE and all that this entails. I have such a support with Professor Vancaillie and his team and am blessed to have supportive loved ones. Meeting other sufferer's on that night removed some of the isolated feeling that comes with this condition. Any information would be sincerely appreciated.

Health and happiness

Narelle

Hi Narelle,

Would you be able to tell me more about this support group in NSW? I just moved to Bondi Junction, I will be studying abroad here for the next four months.. I'm still not sure if I have PN but I have an appointment with Prof. V on tuesday.. feel free to PM me

thanks~=!

Pelvic Pain Support Group will hold it's first meeting on Sat. 9th April 2011.
GAIN office. (Demountable building) Cnr. of Bagot Rd & Hensman Rd. Subiaco. Next to King Edward Memorial Hospital.

time 1 - 3pm.

See attached information.

Cathrine, you are doing so much! I wanted to ask you if you have any advice for me: I live in London and there is no awareness here. Will go through surgery with Bautrant soon but he says I need a lot of physio. There are no qualified physio in London for this so I have decided to fund training for someone but cannot find good candidates and it seems very difficult. How did you do? thank you!

Hi Manon,

When I first suffered PNE I found a women's support group through the local hospital. They were all women who had suffered gynaecological cancer and had never heard of PN. (not surprising.) They were very supportive of me and encouraged me to send my story to a few women's magazines and local newspapers which I did.

My pain specialsit and PN specialsit (from Sydney) backed me up and willingly gave a statement to the media. (Not a lot of attention but it did get in the Woman's Day and the West Australian newspaper. ) The support group (GAIN INc.) Gynaecological Awareness Information Network) hold two educational events per year. (all volunteers.) and they held a pelvic pain awareness day in 2008 where my PN specialist from Sydney agreed to give a presentation on PNE. That was attended by around 100 people.

If I were you, I'd find out if there is a gynae. support group in your area or appraoch Chronic Pain Society. Ask them if you can come along to talk about your situation. You'll be amazed at the support you'll be given. Get talking . Seek out a pelvic floor physiotherapist (usually found in the women's hospital or Sports medicine.) Don't go to any other physiotherapsit as they wouldn't have a clue about the pelvic floor. Encourage them to register on this website and only stick with the one who shows the most interest.

You could try contacting Judy Birch (she has done wonders for PN. She's from Dorset I believe. Don't have her contact details at the moment but if you google her name she has a website for chronic pelvic pain. She's been to France herself to have PNE surgery.

If you can't find a support group, start one yourself. A few people here in Australia are following suit and beginning to get help with setting up a support group in their area.
Find out where your nearest Chronic Pain Society is or approach the hospital Admin. people to direct you to their patient liason person. Tell them your story and ask if they'll assist with finding you a space where you could hold support group meetings. Just one bit of advice, don't have it in your own home. Not a good idea to let people know where you live. You could end up with some undesirable people on your doorstep. Some people become agressive and it's best if you have hospital security on hand. (my personal experience.) good luck with it all. Hope this helps.

PS. Our first group meeting will be on 9th April. 2011.

Thank you! will try now..

Next support group meeting in Perth Sat. May 14th 1 -3pm. King Edward Memorial Hospital Subiaco. Cnr. of Bagot Rd. & Hensman Rd.

Are there any PN support groups in Sydney currently? Thanks

Just wondered if anyone in NSW has started a support group yet?

Perth support group will next be held on Sat. 10th August 2013. 1 - 3pm. King Edward Memorial hospital. Bagot Rd. Subiaco. (GAIN & Midwives Office. Cnr. of BagotRd.and Hensman Rd.)

Males meet at 12pm. 1 hour prior to the scheduled meeting time.