Here is an area to discuss and relate to Spiritual matters....share a thought, happy moment, cry on a shoulder, offer some faith to those in need. This area will not be viewable to non registered users.
A gentlemen who, I suppose, belongs to one or both of the pudendal websites has approached me with a specific request. Below, in general, is what he wants to do. I personally know about 6-7 people who've killed themselves who had PN/pelvic pain, but I'm really not all that hip on this idea below. I'm certainly not going to give anyone these people's personal information, but I also don't really think that it's all that good of an idea for me to personally contact them and bring this issue up. I'd like some opinions of you all on "hope".
Greg
I want to know if you know people who have
committed suicide due to PN/PNE/Chronic Pelvic Pain and if I could get in touch
with them to tell them that I am creating a memorial on facebook (within the
context of our support groups)for them and for their families and friends.
Had surgery in Nantes, France in 2001 with Professor Robert. I advocate physical therapy with PTs who specialize in the pelvic floor. I also advocate injections to help diagnose PN and I am in favor of having PN surgery to release the nerve when the diagnoses points to an entrapped nerve.
I feel like those families and friends can create their own memorials as they see fit (or not). I think it's kind of weird and borderline wrong for somebody who didn't even know them, to want to create this. I think there is quite enough PN "awareness" activity going on without contacting bereaved family members to ask them for permission on something so personal.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
I agree with Celeste too. Contact by a total stranger of the family and friends whose loved ones committed suicide to start a Facebook page? Seems intrusive and insensitive. Individual families can create their own memorials if that helps them in their grieving process.
Emily B wrote:I agree with Celeste too. Contact by a total stranger of the family and friends whose loved ones committed suicide to start a Facebook page? Seems intrusive and insensitive. Individual families can create their own memorials if that helps them in their grieving process.
Emily B.
While I agree with Celeste too, I wouldn't be giving this person the information to contact these people. I would be the one contacting people who I personally knew. I still don't think it would be a good idea. Maybe a nice thought, but just not the right thing to do, in my opinion.
Greg
Had surgery in Nantes, France in 2001 with Professor Robert. I advocate physical therapy with PTs who specialize in the pelvic floor. I also advocate injections to help diagnose PN and I am in favor of having PN surgery to release the nerve when the diagnoses points to an entrapped nerve.
I agree with Celeste. Suicide has touched my immediate family and I would never give permission for his name on a Facebook page. I think this idea is in poor taste.
Diagnosed with left side PN by Dr Renney, March 2010, after over 2 years of searching for help
Left TG Surgery, Dr Ansell, August 2010, failed to relieve pain
Okay, this is what I thought I'd hear from you all. I've told the guy that I've bounced his idea off of some other PNers and that we feel that it wouldn't benefit any of their families and that it would most likely be an intrusion to everyone involved.
Thank you.
Greg
Had surgery in Nantes, France in 2001 with Professor Robert. I advocate physical therapy with PTs who specialize in the pelvic floor. I also advocate injections to help diagnose PN and I am in favor of having PN surgery to release the nerve when the diagnoses points to an entrapped nerve.
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
I agree with Celeste and feel that this area of discussion is inappropriate and far too sensitive.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
I'm not sure I'd say it is inappropriate and far too sensitive. This board has seen plenty of topics that push those boundaries (which I feel is an extremely important part of the work that's done here). Unfortunately, suicide is still often seen as a taboo subject, and often makes many people uncomfortable.
Greg, it probably depends on how well you know the families of those who have taken their lives. If they are close friends, then ask them and let them make the decision whether or not they would want to be associated with this memorial. If you merely "knew of" these people, but were not close (or if you did not know the surviving family members well), then I agree that contacting them is in appropriate.
