75 % better, maybe more

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
User avatar
Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: 75 % better, maybe more

Post by Quilter 2 »

Violet;
Thanks for the encouragement. If I knew where to go here in TN to strengthen my core muscles I would try. I just had so many bad experiences with Drs. that didn't know squat about PN while I was trying to figure out what was wrong with me, I am a bit gun shy!! I try to walk a lot and stand like a soldier straight. I still don't lift overly heavy stuff??? (Most of the time!!) :lol: If there is a program out there to strengthen my core and you or anyone else knows about it please share the info.
I'll shovel for you any time. I owe you big, big, big time from when I just wanted to throw in the towel.
Love 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
User avatar
Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: 75 % better, maybe more

Post by Quilter 2 »

Shana;
I can't quite remember how the first 12 months went. I think for the first month I was allowed up an hour a day. The 2nd and third month might have been a bit better.
You know, call Conway's office and speak to Kathy , his nurse. Ask her if she would send you the after surgery papers so that you know what to expect. Tell her you need to get all your help, kids, family or whatever lined up before surgery. In the meantime I will try to find the paperwork. It may very well be packed somewhere or still at the doctors office down here. I really don't know. Also, Conway's requirements might be somewhere on this site. The requirements may have changed in the past 11/2 years also.
Sorry, I'm not much help
HOLD THE BOAT!! Before I went to hit send I looked one more time and found the paper.
I will try to copy it and send it to you. I'm computer illiterate so give me some time. If not, PM me with your personal e-mail and I'll try it like that.
Wish me luck
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
User avatar
Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: 75 % better, maybe more

Post by Quilter 2 »

Shana;
I promise nothing but here's a try :lol:
Doreen
Attachments
pn2.jpg
pn2.jpg (512.9 KiB) Viewed 2489 times
pn1.jpg
pn1.jpg (429.62 KiB) Viewed 2489 times
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
User avatar
Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: 75 % better, maybe more

Post by Quilter 2 »

Shana;
Sorry. Obviously I don't know what I'm doing. If you can't figure out how to read this mess I sent, Let me know and I'll just type it out here, or as I said before, PM me
Clueless PC person :roll:
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
User avatar
Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: 75 % better, maybe more

Post by Quilter 2 »

Shana;
I'm gonna try something else. I took a picture of the paperwork. I hope this time it's smaller.
Best;
Doreen
Attachments
100_5701.jpg
100_5701.jpg (509.4 KiB) Viewed 2482 times
100_5702.jpg
100_5702.jpg (654.27 KiB) Viewed 2482 times
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
User avatar
Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: 75 % better, maybe more

Post by Quilter 2 »

Shana;
I give up

POSTOP PROTOCOL

Postop Week 1-3
Modified bed rest. No lifting, squatting or bending. Able to sit for toileting only. Limit stairs to 1-2 times / day
Household ambulation, limit to 5-10 minutes at a time (3-4 times / day max. Able to stand 5-10 minutes for meal prep, brush teeth bathe, etc. Exercise: diaphragmatic breathing, ankle pumps, heel slides, gentle trunk rotation

Postop Week 3-6
Same as above
May sit with cushion 5-10 minutes (2-3 times per day) for meals if it doesn't cause pain. May gradually increase walking/standing to 10-20 minutes (3-4 times per day)

Postop Week 4-8
Begin gentle postop PT- myofascial release and gentle connective tissue release. Vaginal or rectal manual therapy may begin chen cleared by MD

Postop Week 6-12
Avoid squatting, bending or lifting
Gradually increase walking/standing (limit to 30 minutes at a time. Limit stairs to 2-3 times per day. NO high impact activities, (biking, running, weight lifting or aerobics
May begin aquatic exercises, gentle stretching or basic yoga exercises when cleared by MD

12 Weeks to 1 year
Avoid frequent squatting, heavy lifting, prolonged sitting and high impact activities

12-24 months
Avoid frequent squatting, heavy lifting and prolonged sitting
No high impact activities

Shana;
I should have done this to begin with instead of cluttering up this web site. I still don't squat or do high impact activities and probably never will or want to. I think Dr. Conway doesn't recommend the PT stuff, at least he didn't a while back. I never did it, mainly because there isn't anyone around me trained in PT. I would never let anybody go inside of me, well maybe Rod IF he's lucky :lol: :lol: :lol:
I think you will like Dr. C whenever you get to meet him. He really seems to be concerned with our issues.
My best to you;
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
shana
Posts: 121
Joined: Sun Mar 03, 2013 6:24 am

Re: 75 % better, maybe more

Post by shana »

Doreen,
Sorry for all the trouble u went thru posting the post-op protocol it actually did post when u scanned it. I really appreciate. I know I'm jumping ahead, I'm good at that, but no heavy lifting for 2 years! Part if my work is brk ging all my equipment with me to each job I attend, every day is a different location, the equipment is on a wheelie but it weighs at least 30lb if not more and I do hv to lift it in and out if my trunk and sometimes up and down a flight of steps or two...I guess I can worry abt it if and when I decide to do surgery...

Thanks again,
Shana
'08 diagnosed with vulvar vestibulitis
'09 vestibulectomy-Dr. Goldstein-failed
'11 right labral repair and release-Dr. Coleman
2/10-8/12 severe depression, minimal dr appointmen
4 different physical therapists '08-'12 no improvement whatsoever
'13 pudendal nerve blocks-Dr. Chapman
More PT
Dr. Conway officially diagnosed PN/PNE 7/13
9/13 Bilateral hip repair Dr. Coleman
10/13-5/14 Major Depression, no dr appointments
More PT
6/14 Dr. Hibner confirmed diagnosis
Looking for help..hoping for answers
User avatar
Violet M
Posts: 6771
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: 75 % better, maybe more

Post by Violet M »

Doreen, Mayo Clinic has a good slide show on core strengthening exercises. http://www.mayoclinic.com/health/core-strength/SM00047 Proceed with caution though and don't do anything that hurts.

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.
User avatar
Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: 75 % better, maybe more

Post by Quilter 2 »

Violet;
Thanks so much for the info.
I will look into that site soon. I'll post results, if any.
I will try not to be stupid with the exercises, but it sure is hard to take things slow when you've had to for a long time. I'm sure you know what I mean.
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
sopranomeg
Posts: 1
Joined: Tue Jun 25, 2013 3:48 pm

Re: 75 % better, maybe more

Post by sopranomeg »

I am sorry to sound desperate, but I am....

after a year of suffering and being mis :( diagnosed.... I now know I have this PN.
the scariest thing... is that for the first time in my life.... I cant have an orgasm... and my clitorus.... I am so sorry to be so graphic... is small and not responding as it should.
Have not had MRI"S yet. It process of being diagnosed.
I see my PT tomorrow and I really need to get to a neurologist asap.
I am scared and terrorfied and if anyone can give me hope I would really appreciate it.
Of course I am burning down there as well......
Is there hope? Or will I never have an orgasm again?
I am sorry to be so graphic... but I am terrorfied and in shock to be quite honest.
Warmly,
Megan
Post Reply

Return to “WELCOME CENTER”