Dale, I was just wondering where you are getting treatment now. Have you been back to Sydney or are your local docs treating you? I guess it would be pretty tough for you to travel. Can't remember if you have posted about any PT evaluations or whether you ever were evaluated by a good PT. I wonder if Peter Dornan knows any good PT's in your area and would be able to make a recommendation. Anyway, it sounds dreadful what you are going and I hope you will be able to get some relief.
Violet
Chronic Pelvic Pain Sydney
Re: Chronic Pelvic Pain Sydney
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: Chronic Pelvic Pain Sydney
Thanks Allan
I'm on the gold coast and the drive to Peter Dornan can be an ordeal on bad days which seem to be most days at present.
My pain is starting to make me reclusive which is not fair on my wife so I really need to look to some pain management. Can you tell me the pain management doctors you have used.
Also with your lyrica dosage have you had any side effects. Have 2 relatives who have taken it for nerve pain (non pudendal related) and one said it didn't work. The other said it caused short term memory loss so he stopped taking it
I have not used any nerve pain meds previously for this problem but I am going to have to try something
Paul
I'm on the gold coast and the drive to Peter Dornan can be an ordeal on bad days which seem to be most days at present.
My pain is starting to make me reclusive which is not fair on my wife so I really need to look to some pain management. Can you tell me the pain management doctors you have used.
Also with your lyrica dosage have you had any side effects. Have 2 relatives who have taken it for nerve pain (non pudendal related) and one said it didn't work. The other said it caused short term memory loss so he stopped taking it
I have not used any nerve pain meds previously for this problem but I am going to have to try something
Paul
Re: Chronic Pelvic Pain Sydney
I see Dr Peter Georgius at Noosa on the Sunshine Coast. He is very pudendal neuralgia aware and was recommended by the Sydney clinic.
Lyrica can be helpful. Trouble is the side effects at the higher dosages. It seems you do need the higher dosages as well to have any effect on PN type pain. I do notice the short term memory loss at dosages of 150mg. 75mg seems not too bad, but if your pain is severe I don't expect it would do much.
I know some people getting good relief on lyrica but it required a dosage of 500-600mg per day.
Where is your pain mostly located?
Lyrica can be helpful. Trouble is the side effects at the higher dosages. It seems you do need the higher dosages as well to have any effect on PN type pain. I do notice the short term memory loss at dosages of 150mg. 75mg seems not too bad, but if your pain is severe I don't expect it would do much.
I know some people getting good relief on lyrica but it required a dosage of 500-600mg per day.
Where is your pain mostly located?
Allan.
Re: Chronic Pelvic Pain Sydney
hi all sorry for not posting as I live where I don't have internet at the moment at port Arthur in southern tas. tablets well there's a mix that I take:
palexia 200mg 1x morning/ night this really helps with pain
valproate ec 200mg 1 morn/night
quetiapine 1x 100mg night
pristiq 1x50mmg morning was 100mg
Temgesic 200 microgram Sublingual good for pain also take up to 3-6 per day when req
panaforte as req
brufen as req alternate with panaforte
lyrica 75-150 depending on how I am feeling minium of 75 daily
antidepressants do help with winding down of pain. valproate mood which contributes to pain I believe.
PT in Hobart is great jane barker from the pelvic floor clinic. jane was the one to shed some light on what I have going on as all the doctors were scratching their heads.
jane arranges for me to see whira when I need too.
last time I had botox I had nerve blocks as well which was benefical but unfortunately I am weaning off it quicker every time I have it. drives me insane the pain. honestly have gone to do myself in 3 times but I have gone thru my safety steps which stops me I am frightened that one day it will just get too much and I wont evaluate my safety steps. my poor family is the ones that suffer as much as me even though I am the one with the condition. the prof in Sydney is just too far for me to keep going back to all the time hence doctors here want to fit a stimulator in for the bits and pieces etc. neuro surgeon wont do lowerback until pundendal part is sorted.
norpan patches were helping with pain but was needing more all the time so docs took me off for a while and introduced palexia. while ok I don't get the full 12 hrs relief they say its only about 8-9 hrs of decreased pain but they do work for the 8-9. must go seeing professor buzzard for the insurance company today. in an hour and half. be in touch.
dale
palexia 200mg 1x morning/ night this really helps with pain
valproate ec 200mg 1 morn/night
quetiapine 1x 100mg night
pristiq 1x50mmg morning was 100mg
Temgesic 200 microgram Sublingual good for pain also take up to 3-6 per day when req
panaforte as req
brufen as req alternate with panaforte
lyrica 75-150 depending on how I am feeling minium of 75 daily
antidepressants do help with winding down of pain. valproate mood which contributes to pain I believe.
PT in Hobart is great jane barker from the pelvic floor clinic. jane was the one to shed some light on what I have going on as all the doctors were scratching their heads.
jane arranges for me to see whira when I need too.
last time I had botox I had nerve blocks as well which was benefical but unfortunately I am weaning off it quicker every time I have it. drives me insane the pain. honestly have gone to do myself in 3 times but I have gone thru my safety steps which stops me I am frightened that one day it will just get too much and I wont evaluate my safety steps. my poor family is the ones that suffer as much as me even though I am the one with the condition. the prof in Sydney is just too far for me to keep going back to all the time hence doctors here want to fit a stimulator in for the bits and pieces etc. neuro surgeon wont do lowerback until pundendal part is sorted.
norpan patches were helping with pain but was needing more all the time so docs took me off for a while and introduced palexia. while ok I don't get the full 12 hrs relief they say its only about 8-9 hrs of decreased pain but they do work for the 8-9. must go seeing professor buzzard for the insurance company today. in an hour and half. be in touch.
dale
Re: Chronic Pelvic Pain Sydney
Dale, I hope the palexia works for you. There is a form of buprenorphine that you wouldn't be as likely to develop a tolerance to. It is suboxone which is buprenorphine with naloxone.
That's good that you have a good PT. I hope you will continue to see improvements.
Violet
That's good that you have a good PT. I hope you will continue to see improvements.
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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aussie_pain
- Posts: 14
- Joined: Tue Jun 21, 2016 6:13 pm
Re: Chronic Pelvic Pain Sydney
H
Last edited by aussie_pain on Tue Sep 17, 2019 12:07 am, edited 2 times in total.
Re: Chronic Pelvic Pain Sydney
At the moment I've just had another MRI and will find out results later this week. I've seen my pain specialist at the Sunshine Coast and been diagnosed with neuropathy of the lateral cutaneous nerve of the thigh....Its a 100% definite as I have burning into the thigh with the distribution of the nerve.
The pain specialist did some tests on me to diagnose this, so now I've had another MRI ordered to see if anything can be identified causing my symptoms...he is imaging thoracic spine, lumber spine, psoas muscle and some of the pelvis. I was in the machine for over an hour!!
My main pain continues which is left sided Buttock/rectal pain....burning into the thigh and sometimes sciatica into the calf muscle which wakes me up early in the morning but not always.
A neurologist at the Sunshine Coast suggested piriformis syndrome to me.....However the only treatment for that is physiotherapy as far as I believe?? So I do daily stretches which does help somewhat but not completely.
The pain specialist did some tests on me to diagnose this, so now I've had another MRI ordered to see if anything can be identified causing my symptoms...he is imaging thoracic spine, lumber spine, psoas muscle and some of the pelvis. I was in the machine for over an hour!!
My main pain continues which is left sided Buttock/rectal pain....burning into the thigh and sometimes sciatica into the calf muscle which wakes me up early in the morning but not always.
A neurologist at the Sunshine Coast suggested piriformis syndrome to me.....However the only treatment for that is physiotherapy as far as I believe?? So I do daily stretches which does help somewhat but not completely.
Allan.
Re: Chronic Pelvic Pain Sydney
I used a TENS unit for piriformis syndrome and it was helpful. You can read this thread about it. http://www.pudendalhope.info/forum/view ... =32&t=4015
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: Chronic Pelvic Pain Sydney
Thanks I will try that.....
My MRI result showed an annular tear l5/s1
Not sure if that could be causing some of my symptoms. Back to the pain specialist in August.
My MRI result showed an annular tear l5/s1
Not sure if that could be causing some of my symptoms. Back to the pain specialist in August.
Allan.
Re: Chronic Pelvic Pain Sydney
Possible, but typically the pudendal nerves comes off of S2,3,4. I think there has been documentation of some variations. I guess a nerve root block to L5/S1 could be diagnostic. https://www.laserspineinstitute.com/bac ... bar/l4_l5/
Good luck,
Violet
Good luck,
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.