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Karyn;
I agree with you about the added work for the mods. Next time I can't sleep, I think I'm gonna read a book. I was just thinking from the partners point of view, not even really given the idea consideration from ours and the mods point of view. Sorry, I really should have tried to look at things from everyones point of view before I threw out the idea.
Best regards to all;
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
Oh, Doreen! It really was/IS a good idea! And I fully support it! I'm just hoping we can get some input from others about how iron out the crinkles.
Warmest of regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
I think it's a great idea and I'm sure the Mods wouldn't mind but I doubt that it's possible because we can't really verify who each person is who registers. What I mean is I don't see how we could guarantee privacy for family members on a separate forum because we can't verify that people who register are who they say they are. Does that make sense?
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.
Yes, makes perfect sense to me, Violet! As I had mentioned earlier, this is a forum and I dont' think we should have an exclusive area for anyone.
Thanks so much for your input!
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Karyn, Violet;
It makes sense to me also. The more I think of it, though, it does seem like a lot of extra work for everyone that designs this site. I guess just having a section where the spouse/partners can write would be the way to go. If the "others" feel like writing, fine, if not, that would be fine also. Whatever makes people comfortable would be the way to go, I think. We could probably learn a lot about ourselves and see things from a different point of view.
My best;
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
Quilter 2 wrote:We could probably learn a lot about ourselves and see things from a different point of view.
Excellent comment, Doreen! After all, that is another important aspect of the forum. My personal feeling about this is, if you don't want to know, don't go there!
Warmest of regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
I feel like we do enough hiding with this condition. I'm not sure how I would feel if my loved ones had a secret forum only they had access to. I don't think it would make me feel very good. If this were a forum about shoulder pain, would we even be thinking of having a separate, secret forum just for loved ones of those with shoulder pain? I feel like having a non-public forum would only add to the shame we already feel with this condition.
I do think it would be nice if loved ones of PN sufferers could have a forum on our list. It could be public, like ours. That way, those spouses/partners/family who need support can read the posts in that forum, just like the other forums.
What's nice is that spouse/partner/family members can always send private messages. If members have a topic that they is too private, or individual support is needed, they can always send private messages to each other. Also, there's no need to use real names, so they can keep their anonymity and still get support.
I think a support forum for loved ones of PN sufferers is a great idea. They can see that they're not alone.
Emily;
As time passes, I think you and some of our other PN friends are completely right. My intention wasn't to be mean. As I stated before, I just didn't think it through from all angles. I didn't think of it as "secret". I guess, I was looking at it from my husbands actions. He very rarely says anything negative to me and I know he feels pissed at times. Once again, I'm sorry.
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
Hi Doreen,
I never got the impression from you that you thought the family members section should be private. I think you were simply tossing ideas out there and your ideas are really good ones! That's what we're here for - to toss ideas back and forth and discuss them. You've done superbly! Is that a word?
It looks like we're getting some more good feedback and hopefully, a spot will be available in the near future.
Hugs and warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Hi, Doreen. I didn't take offense at all. I was just adding in my 2 cents. The idea for those who support and love us to have a public forum in our list of forums is a great idea. Keep the ideas comin'!
I was just thinking from the partners point of view, not even really given the idea consideration from ours and the mods point of view. Sorry, I really should have tried to look at things from everyones point of view before I threw out the idea.
Is that a word? 