Useful Pain Support Organisations and Resources

Treatment options in Canada

Re: Useful Pain Support Organisations and Resources

Postby CarolineinVic » Wed Feb 06, 2013 3:05 am

The People In Pain Network http://peopleinpainnetwork.wildapricot.org/ is an organization setting up grassroots support groups in Canada. They have started in BC and are spreading across Canada. I have started a group in Victoria.
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Re: Useful Pain Support Organisations and Resources

Postby helenlegs 11 » Tue Apr 09, 2013 1:35 pm

Saw this and thought it may be useful as a good deal of pelvic floor problems are well explained.
There are exercises, depending on hyper or hypo and a list of Canadian physiotherapists who are PN aware. They do seem to be coming at the problem as if physiotherapy may be the or part answer to everyone's problems, which is often the case of course, and something that must be tried, but It won't help those with an actual entrapment, unfortunately.
Regardless, everything is sensible and well explained so is worth a look :) Sorry if already posted.
http://www.pelvichealthsolutions.ca/for-the-patient/
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Re: Useful Pain Support Organisations and Resources

Postby QuietQuestion » Thu Jan 02, 2014 3:56 pm

Hi,

I sympathize with all of the posters on here. I am the wife of a man who has been recently diagnosed with PNE and have witnessed his suffering and pain over the past 5 years. It has broken my heart watching his journey and struggle finding answers to a condition that was long deemed "mental". I also sympathize with those who find that naming the condition does little to assuage the pain.

My question is, are there any support groups for the spouses of those suffering from PNE? If not, do you feel there would be interest/value in creating one?

Many times it can feel lonely and confusing as the spouse of a partner going through this, especially if there are no answers or effective treatments. The severe impact this condition has on a marriage is real, and I feel as if the medical community may not realize that PNE has real impact on the families of those afflicted. We hear, "Be understanding! You must understand the depths of this condition! His anger situation and is not directed towards you, so be patient!" , but do not hear, "How are you coping? How has your relationship fared? Are you doing anything to take of you while you support your spouse?"

The spouses who are coping with the sudden lack of intimacy, both physical and emotional, the emotional distancing from their spouses, the days where his/her frustration and anger are directed towards you and your kids leaving your feeling at fault/the trigger of her/his pain, and the days where you are reminded that the future "cannot be planned" - there is a large amount of loss without discussion about how to support the spouses who are trying to physically care for their wife/husband, taking care of the kids, and working to support the household.

If you are aware of spousal PNE support groups, please message me.

The more we can support those who are afflicted, along with supporting those who care for them, the better wrap-around support we can create to help those with PNE.

Thanks!

QK
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Re: Useful Pain Support Organisations and Resources

Postby Violet M » Mon Feb 10, 2014 5:38 am

QK, I don't know of any support groups for spouses. We talked about starting one on this forum awhile back but decided against it because there was no way to make it so that only spouses could read it.

I think it is easy for PN patients to be so overwhelmed by their pain that they forget what their spouse is going through and to forget to be grateful to their spouse for taking on so many added burdens.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Useful Pain Support Organisations and Resources

Postby jigger48 » Wed Sep 23, 2015 1:45 pm

Hello, I am new to this sight.. I was wondering does anyone know of any doctors in Ontario specialize in this? Pain is getting so unbearable, I feel like I could jump......that's if I could stand long enough.
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Re: Useful Pain Support Organisations and Resources

Postby nyt » Wed Sep 23, 2015 3:36 pm

If you go to the home page there is a list of doctors that treat patients with PN. You can also go to the International Pelvic Pain Society and look for someone who generalizes in pelvic pain. You could even go to a PT in your area for initial help and they might know a doctor in your area.

http://pelvicpain.org/home.aspx
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
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