Dear All,
I have an idea.
I've gained a great deal of encouragement from discussions on this site...and a little chunk of discouragement too, to be perfectly honest.
I was wondering if there could be a larger heading called something like, "Hope in your suffering" (or whatever) where people can go directly for encouragement. Maybe even without signing up.
I was overwhelmed when I first found this site--so much info! So much medical advice! But as I began to dig, I found the 'hope' that drew me to the site.
For someone in a state of panic and pain, feeling lonely and isolated, a big giant arrow that says FIND HOPE HERE might be helpful. I just really feel for people who are feeling desperation. I think it could help.
I watched this video today that made me think about the need for people ina moment of desperation.
Someone gets it. https://www.youtube.com/watch?v=2erWhhE ... ata_player
Supporting each other through the pain
Supporting each other through the pain
Anal/rectal pain began 12/12 | Pain advanced to entire pelvis by 2/13 |
PF PT 2/13 to 7/13 |Acupuncture 7/13 to present
Pain is CONSTANT, made worse by standing, walking, kneeling
UNBEARABLE with sitting |Cushions mock me
20+ years of fibromyalgia | Interested in not losing my marbles...
My goal: To find creative ways to live and work with PN, while pursuing wellness.
PF PT 2/13 to 7/13 |Acupuncture 7/13 to present
Pain is CONSTANT, made worse by standing, walking, kneeling
UNBEARABLE with sitting |Cushions mock me
20+ years of fibromyalgia | Interested in not losing my marbles...
My goal: To find creative ways to live and work with PN, while pursuing wellness.
Re: Supporting each other through the pain
Good idea, Grace. I'll bring it up to the moderators. I think some people were concerned that we already had too many forum sections but maybe we can figure out a way to consolidate some.
Violet
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.
Re: Supporting each other through the pain
Hi Grace,
I agree with Violet - great suggestion and I appreciate you putting it forth. I'm very glad you found us and have gotten some encouragement and support from the HOPE community. I also appreciate you posting Katherine's video. Katherine used to be an active member of our community, but hasn't visited in a while. I deeply admire her courage, perseverance and compassion to help others.
Kind regards,
Karyn
I agree with Violet - great suggestion and I appreciate you putting it forth. I'm very glad you found us and have gotten some encouragement and support from the HOPE community. I also appreciate you posting Katherine's video. Katherine used to be an active member of our community, but hasn't visited in a while. I deeply admire her courage, perseverance and compassion to help others.
Kind 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.
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.
Re: Supporting each other through the pain
Yeah. I'm really encouraged and feel like I am not alone, but when you in the first stage of clicking, clicking, clickinga.
I actually broke down after reading the testimonials. I was not in a place where I could see any good in the good reports. Of course, I read them now thinking, Yes! and One day!
Maybe I can write something up for the moderators. Now that I'm jobless and all... I have a little more emotional energy and feel less panic and urgency about my illness.
I wanna do what I can do.
I actually broke down after reading the testimonials. I was not in a place where I could see any good in the good reports. Of course, I read them now thinking, Yes! and One day!
Maybe I can write something up for the moderators. Now that I'm jobless and all... I have a little more emotional energy and feel less panic and urgency about my illness.
I wanna do what I can do.
Anal/rectal pain began 12/12 | Pain advanced to entire pelvis by 2/13 |
PF PT 2/13 to 7/13 |Acupuncture 7/13 to present
Pain is CONSTANT, made worse by standing, walking, kneeling
UNBEARABLE with sitting |Cushions mock me
20+ years of fibromyalgia | Interested in not losing my marbles...
My goal: To find creative ways to live and work with PN, while pursuing wellness.
PF PT 2/13 to 7/13 |Acupuncture 7/13 to present
Pain is CONSTANT, made worse by standing, walking, kneeling
UNBEARABLE with sitting |Cushions mock me
20+ years of fibromyalgia | Interested in not losing my marbles...
My goal: To find creative ways to live and work with PN, while pursuing wellness.
Re: Supporting each other through the pain
Grace, I would like to hear more about what it is was that was discouraging and what you found helpful on the site. Most of the sections on the forum are publicly viewable without signing in but there are sections where you have to sign in.
Were you thinking of something like a blog? We have capability for that on the website but just haven't had time to develop it. I've always thought it would be really cool to have different people write blogs for the website.
Violet
Were you thinking of something like a blog? We have capability for that on the website but just haven't had time to develop it. I've always thought it would be really cool to have different people write blogs for the website.
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.
Re: Supporting each other through the pain
Grace
We welcome any Personal stories which can be shown on our home pages as well as on the forum.
Any input from members is always appreciated. We are talking about your suggestion for new headings...it is on our Agenda already and something we have been considering for a long time now.
We welcome any Personal stories which can be shown on our home pages as well as on the forum.
Any input from members is always appreciated. We are talking about your suggestion for new headings...it is on our Agenda already and something we have been considering for a long time now.
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.
Re: Supporting each other through the pain
Thanks for the replies! I've been in a tough space, but I will give a fuller reply soon. For now, I just wanted to say that I really appreciate this site and it has been incredibly helpful to me. On my phone now...more to come! 
Anal/rectal pain began 12/12 | Pain advanced to entire pelvis by 2/13 |
PF PT 2/13 to 7/13 |Acupuncture 7/13 to present
Pain is CONSTANT, made worse by standing, walking, kneeling
UNBEARABLE with sitting |Cushions mock me
20+ years of fibromyalgia | Interested in not losing my marbles...
My goal: To find creative ways to live and work with PN, while pursuing wellness.
PF PT 2/13 to 7/13 |Acupuncture 7/13 to present
Pain is CONSTANT, made worse by standing, walking, kneeling
UNBEARABLE with sitting |Cushions mock me
20+ years of fibromyalgia | Interested in not losing my marbles...
My goal: To find creative ways to live and work with PN, while pursuing wellness.