Hi. Im new here. I have been suffering constant pain in the anus/rectum, for about 36 years (cant remember exactly). Four General practicioners, and 3 specialists, have not diagnosed it. Recently I discovered Pudendal neuralgia on the internet. I think that's what it is. Wow, a ray of light (faint) at the end of the tunnel.
Just reading of others experiences has been good for my spirit.
My experience of PN and specialist colorectal physicians, echoes others experience. They all felt inside with their finger, and looked inside with an instrument, and that was that! They seemed to have a huge empty space instead of knowledge, where the "nether regions" were concerned. It must have been coming from somewhere, and surely it was possible for the pain to be from a nerve, instead of from where the pain felt (to my brain).
BUT - I am finding no help in NZ. I know there is help available in Australia, and I might go there, but that will be expensive for travel and accommodation.
I see help in NZ has been sought previously. Has anyone found any worthwhile help in NZ. ?
Any help in NZ?
Re: Any help in NZ?
Hi Rexbeer,
It's possible that some of the Australian pn doctors know about NZ doctors who treat pn. (The circle of doctors who attend the pn-conferences is probably fairly small, so they might all know one another). So, you could call a few of the Australian doctors to see if their offices could give you suggestions.
April
It's possible that some of the Australian pn doctors know about NZ doctors who treat pn. (The circle of doctors who attend the pn-conferences is probably fairly small, so they might all know one another). So, you could call a few of the Australian doctors to see if their offices could give you suggestions.
April
Re: Any help in NZ?
An update - I contacted all Neurologists and Musculoskeletal specialists in NZ, asking if they had experience with PN. NO neurologists replied - good grief. Most musculoskeletal Drs replied - isn't that interesting - possibly reflects different patient-orientated culture in musculoskeletal, or could be simply no experience of PN in Neurology?
I have found one Musculo Dr near where I live (Auckland), who says has treated PN, sometimes with success. I have booked a consultation, which is exciting news.
Meanwhile I have moved forward with research on the internet, with my GP, to try medications. I am aware of 5 that might help - Amitryptiline, Nortyptiline, gabapentin, Pregabalin, Duloxetine.
First - took Pregabalin at 1x75mg/day for 9 days, then stopped because I thought it caused swollen ankles and feet - not badly, but presumably long term and higher dose it would be worse, so walking would be hard which would be disastrous. Also, it didn't bring any reduction in pain or better sleep. BUT, later I decided that the swollen ankles are almost certainly caused by another drug I am taking - so please don't assume Pregabalin might cause it.
I now have been prescribed Nortryptiline at 12.5mg increasing to 25mg/day. I favoured Nortrypline, because my wife is taking it at 10mg/day for Thoracic neuralgia, and its been very effective, reducing pain almost totally; with no significant side effects. I have not started it yet, as there are other complications with other drugs.
I feel somewhat heartened to be doing things that might be positive, instead of sitting (no, standing!) around listening to others commiserating.
I have found one Musculo Dr near where I live (Auckland), who says has treated PN, sometimes with success. I have booked a consultation, which is exciting news.
Meanwhile I have moved forward with research on the internet, with my GP, to try medications. I am aware of 5 that might help - Amitryptiline, Nortyptiline, gabapentin, Pregabalin, Duloxetine.
First - took Pregabalin at 1x75mg/day for 9 days, then stopped because I thought it caused swollen ankles and feet - not badly, but presumably long term and higher dose it would be worse, so walking would be hard which would be disastrous. Also, it didn't bring any reduction in pain or better sleep. BUT, later I decided that the swollen ankles are almost certainly caused by another drug I am taking - so please don't assume Pregabalin might cause it.
I now have been prescribed Nortryptiline at 12.5mg increasing to 25mg/day. I favoured Nortrypline, because my wife is taking it at 10mg/day for Thoracic neuralgia, and its been very effective, reducing pain almost totally; with no significant side effects. I have not started it yet, as there are other complications with other drugs.
I feel somewhat heartened to be doing things that might be positive, instead of sitting (no, standing!) around listening to others commiserating.
Re: Any help in NZ?
You could also check out the list of Australian PT's on the pudendalhope.org website in the left hand menu and see if any of them know of a good PT in NZ. If you can find a good PT in NZ you may want to try that route first.
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.
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logcrusader
- Posts: 3
- Joined: Sun Sep 29, 2019 10:30 pm
Re: Any help in NZ?
As a male 44 years old ive been living with what the drs call CPPS or chronic prostatitis. essentially the too hard bucket to diagnose. im in chch nz, and also very interested in PN as i do have a a number of similar issues. Ive had PT doing internal checks and my muslces are all very sensitive. My lower back is tender to touch, and the pains are particularly horrid. Ive been down the pain meds you are suggesting and for me they did nothing more than make me a walking zombie. Ive been through countless antibiotics, aswell as EPS tests on semen to check for infections etc. I find that once i lay down and rest the pain goes, i go to bed, no pain, i wake up and feel ok, have a shower, walk around, go to work, sit down. pain builds up.. I also have pain in my feet and legs.
Ive not yet been about to find anyone who would consider PN... the odd pelvic person suggested it, but primarily the focus is on females and there doesnt seem to be many/any drs working with males.. and then add NZ on top to complicate it..
Keen to hear your progress..
Ive not yet been about to find anyone who would consider PN... the odd pelvic person suggested it, but primarily the focus is on females and there doesnt seem to be many/any drs working with males.. and then add NZ on top to complicate it..
Keen to hear your progress..
Re: Any help in NZ?
Since I last posted, I have done two things -
1. Went to a Musculo-skeletal specialist in Auckland, who said he might be able to help. He thought it might be a problem with ligaments, and injected Tetra-decyl Sulphate into Symphasis Pubis ligaments. The pain did not reduce. I returned to see him, and explained more carefully where the pain felt - right side of anus, which is several centimetres from the S-P ligaments. He injected into the Anal sphincter muscle, which is right where I feel the pain. Pain did not reduce. he said he doesn't treat nerves, and couldn't do anything more.
I assume that a musculo-skeletal specialist does not actually treat neuralgia (ie nerves), but thought it might be something else (musculo-skeletal). Neurologists are supposed to treat nerves, but out of 40 in Auckland I contacted, NONE replied; presumably because they didn't have any knowledge of the Pudendal nerves - extraordinary).
2. I kept trying Nortryptiline, up from 25 to 50mg per day. After several weeks, I then reduced it to 25 and then stopped it altogether. Going up, I thought here was some reduction in pain, but being slowly I wasn't quite sure. When a got back down to zero, the pain came back with a veangance. I concluded that it did reduce pain significantly, particularly at night and when walking. So, I have decided to continue at 25mg.
The fact that Nortryptiline has reduced the pain, reinforces my view that is probably neuralgia.
The Norptryptiline does have some adverse side effects - -
- seems to sap some energy (that is the main problem).
- caused more bad dreams - also more anxiety
And a positive effect - reduced urinating; very beneficial during the night.
Note that there was a sedative effect that helped sleep, but it wore right off after several nights, so not helpful long term.
The positive result with Nortryptiline has made me feel better. But longer term, I worry about negative effects of taking the drug (along with other drugs for other things). If the pain stays low, I wont want to seek any specialist help.
1. Went to a Musculo-skeletal specialist in Auckland, who said he might be able to help. He thought it might be a problem with ligaments, and injected Tetra-decyl Sulphate into Symphasis Pubis ligaments. The pain did not reduce. I returned to see him, and explained more carefully where the pain felt - right side of anus, which is several centimetres from the S-P ligaments. He injected into the Anal sphincter muscle, which is right where I feel the pain. Pain did not reduce. he said he doesn't treat nerves, and couldn't do anything more.
I assume that a musculo-skeletal specialist does not actually treat neuralgia (ie nerves), but thought it might be something else (musculo-skeletal). Neurologists are supposed to treat nerves, but out of 40 in Auckland I contacted, NONE replied; presumably because they didn't have any knowledge of the Pudendal nerves - extraordinary).
2. I kept trying Nortryptiline, up from 25 to 50mg per day. After several weeks, I then reduced it to 25 and then stopped it altogether. Going up, I thought here was some reduction in pain, but being slowly I wasn't quite sure. When a got back down to zero, the pain came back with a veangance. I concluded that it did reduce pain significantly, particularly at night and when walking. So, I have decided to continue at 25mg.
The fact that Nortryptiline has reduced the pain, reinforces my view that is probably neuralgia.
The Norptryptiline does have some adverse side effects - -
- seems to sap some energy (that is the main problem).
- caused more bad dreams - also more anxiety
And a positive effect - reduced urinating; very beneficial during the night.
Note that there was a sedative effect that helped sleep, but it wore right off after several nights, so not helpful long term.
The positive result with Nortryptiline has made me feel better. But longer term, I worry about negative effects of taking the drug (along with other drugs for other things). If the pain stays low, I wont want to seek any specialist help.