Where does everybody go?

Here we can discuss difficulties with comfort in sitting and normal living - cushions, bicycle seats, car seats, work stations etc.
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Testudo
Posts: 7
Joined: Sun Oct 25, 2020 11:57 am

Where does everybody go?

Post by Testudo »

I see many posts in the past with no recent updates on how they are doing or what is going on. I see people have persevered for years. I don’t think I will be able to afford or get the surgery. Do people stop coming because of despair? I hope suicide is not the final solution. My faith says suicide condemns me to hell. Violet?
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Where does everybody go?

Post by Violet M »

Some people get well and move on. Some people struggle for years. There are no easy answers and each person copes differently. I always tell people to please not consider suicide because typically they haven't tried all of their options for getting well. You owe it to yourself to at least try the available treatment options. And often there are new remedies coming available thanks to the doctors who are trying to treat us.

I'm not sure where you live but I think typically the European doctors are more affordable for surgery than in the US. But if possible, there are probably other things you would want to try before surgery because surgery isn't without risks.

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.
Testudo
Posts: 7
Joined: Sun Oct 25, 2020 11:57 am

Re: Where does everybody go?

Post by Testudo »

Violet, I’m in Delaware. So far Dr. Conway who accepts insurance seems to be my best option at this point along with a listed PT an hour from me. I am not really in that much “pain”, unless burning counts?
make-it-stop
Posts: 68
Joined: Tue May 10, 2011 6:53 am
Location: Chicago, IL

Re: Where does everybody go?

Post by make-it-stop »

I haven't been on in a few years mostly because I got well enough to work, and my job has been taking all of my time. My pudendal pain is probably from tight muscles but I never got a definite answer. My regimen consists of taking a small dose of methadone a few times per day, sitting in a certain chair whenever I sit (aeron), and sleeping with the Comfort-U pillow whenever I'm in bed. That's it. I work about 60-70 hours a week now.
5/11: burning in all areas innervated by PN; self-diagnosed PN
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
Renee Renee
Posts: 2
Joined: Sun Sep 22, 2024 2:05 am

Re: Where does everybody go?

Post by Renee Renee »

Hi, I am new here. What is the chair you are referring to? Aeron? TY
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Where does everybody go?

Post by Violet M »

Testudo wrote: Tue Nov 10, 2020 5:14 am Violet, I’m in Delaware. So far Dr. Conway who accepts insurance seems to be my best option at this point along with a listed PT an hour from me. I am not really in that much “pain”, unless burning counts?
I consider burning to be pain. I think most people would. But there is mild burning or there is intense burning. What would you say your pain level is - out of 10?

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.
ChristianWantsToLive
Posts: 2
Joined: Tue Oct 01, 2024 4:50 am

Re: Where does everybody go?

Post by ChristianWantsToLive »

I understand… many people leave with a blindside and don’t post updates. How do you make a post on here ? Or do I need to get verified? I’m a new account and I’ve been looking on the website for half an hour and there is no option to make a post. How do I post ?
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Where does everybody go?

Post by Violet M »

Chistian, it looks like you just posted in this thread, so your account is already activated on the forum. If you want to start a new topic/thread, then you can go to the "Board Index" which you can see near the upper left of the forum. Then choose a section of the forum you want to start a topic in, such as the Welcome Center section of the forum. Click on that section, then click on New Topic in the upper left, give your topic a title, type your message, and click submit at the bottom.

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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