Australian support group

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Australian support group

Postby catherine a » Tue Sep 28, 2010 1:46 am

GAIN (Gynaecological Awareness Information Network) based in Perth Western Australia. www.gain.org.au
Volunteers driving awareness and education of gynaecological conditions.
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
catherine a
 
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Joined: Sat Sep 18, 2010 4:46 am
Location: Perth Western Australia

Re: Australian support group

Postby Narelle Jane » Mon Feb 21, 2011 12:30 pm

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
Hysterectomy/Ovaries removed at age 26yrs as a result of severe endometriosis. 19 yrs later diagnosed with PNE. Have tried botox injections, physiotherapy, osteotherapy and had PNE release surgery 14 months ago. Taking significant amounts of pain medication and will be trialling neurostimulator in upcoming weeks. Health & Happiness to all :-)
Narelle Jane
 
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Re: Australian support group

Postby jamiegross » Thu Feb 24, 2011 11:02 pm

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~=!
Pevlic pain 8/15/10
Diagnosed with PN 2/11
Currently taking lyrica & cymbalta, PT, acupuncture
ganglion impar block -triggered lower back and sacrum pain
botox injections- caused coccxydynia
Deviated my coccyx 6 months prior- had a horrible case of posion ivy right before symptoms began, connection?
jamiegross
 
Posts: 43
Joined: Mon Feb 14, 2011 4:06 am

Re: Australian support group

Postby catherine a » Sun Mar 13, 2011 7:37 am

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.
The not so secret womens business (4).pdf
(63.31 KiB) Downloaded 271 times
Final Support Group Flyer.pdf
(269.36 KiB) Downloaded 312 times
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
catherine a
 
Posts: 291
Joined: Sat Sep 18, 2010 4:46 am
Location: Perth Western Australia

Re: Australian support group

Postby manon13 » Fri Mar 25, 2011 1:18 am

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!
manon13
 
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Joined: Fri Nov 26, 2010 12:19 am

Re: Australian support group

Postby catherine a » Sun Mar 27, 2011 6:04 am

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.
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
catherine a
 
Posts: 291
Joined: Sat Sep 18, 2010 4:46 am
Location: Perth Western Australia

Re: Australian support group

Postby manon13 » Sun Apr 10, 2011 10:42 am

Thank you! will try now..
manon13
 
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Joined: Fri Nov 26, 2010 12:19 am

Re: Australian support group

Postby Mod8 » Sat Apr 16, 2011 11:58 pm

Next support group meeting in Perth Sat. May 14th 1 -3pm. King Edward Memorial Hospital Subiaco. Cnr. of Bagot Rd. & Hensman Rd.
Mod8
 
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Joined: Thu Sep 02, 2010 2:18 pm

Re: Australian support group

Postby Sydney150 » Mon Apr 30, 2012 7:33 pm

Are there any PN support groups in Sydney currently? Thanks
PN since March 2006. Chronic pain from when I wake up to when I go to sleep. Currently apply Xylocaine Ointment 5% (applied approx every 80 mins). See chiro once or twice a week.
Tried PN physio, Acupuncture, Cymbalta, Lyrica, Palexia, Topamax,Valium suppositories, Endep, Endep cream - can't tolerate them, quit after being drowsy, depressed, weight gain. Had PRF procedure July 2012, no improvement. Had TG PNE release surgery August 2012. L5-S1 spinal fusion and L5 nerve decompression Feb 2015
Sydney150
 
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Re: Australian support group

Postby catherine a » Sun Aug 04, 2013 12:10 am

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.
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
catherine a
 
Posts: 291
Joined: Sat Sep 18, 2010 4:46 am
Location: Perth Western Australia


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