Desperate

[blink]

Hello ... in desperation I have only just found this site and have spent many hours reading, watching videos and almost crying with relief as this is the first time I have found something that describes so clearly the symptoms that I have endured ... burning, stinging pain which is much worse sitting & gets worse as the day goes on (which I have described at its worst being like an anus migraine), urgency of bowel movements and a reduced sensation/ speed in urination ... apologies if that's TMI.

I think that I have pudendal nerve entrapment which has been mistreated for the past 6 years.... having been down the gastroenterologist/ gynaecologist/ pain specialist/ psychologist-hypnotherapist trail & having 3 colonoscopies, gastroscopy, lumbar xray, kidney function test which has proved little & greatly lightened my savings. I have been pursuing an overgrowth of clostridia (renowned for causing pain) & prevotella and through many treatments I have greatly improved my digestion but not the recurrent pain which intitially responded to Endep/ Lyrica but proceeded to the point where I could not take enough Lyrica and still function in the world.

I wouId be interested in your feedback on my plan of attack -
1) As I live in Brisbane - make an appointment with Peter Dorman
2) Visit GP to get a referral for MRI with Dominic Kennedy (Qld Xray) - although the only posts on this site I can find are from him in 2010 & he had not yet managed to find a positive case of PNE . I have emailed him ... but wondering if any other better sources of imaging available in Australia? I am willing to travel.
3) Make appointment with Theirry Vancaillie - which I realize I will probably have to wait a long time for.
4) Possibly re-visit a pain clinic (not sure if this should be in Brisbane or Tim Pavy in Sydney and whether it should be before/ after Vancaillie's appointment?
5) Find/make cushion for sitting
6) Do more walking & possibly give up yoga

I have also experienced flare-ups but was wondering whether others have experienced perfect pain free times - of up to 2 weeks in between these? I also find a correlation between pain and increased frequency of bowel movements and also urination and wondered if this was common? I also have patches of incredibly foggy thinking.

Apologies for this long rave ... I am quite desperate for answers and am finding that despite the taking of Endep I still sometimes feel like giving up. Thank you for reading.

[donstore]

Blink, make an appt. With Dr. Vancaille, try Oxycodone or amytryptelene, see a PN aware physiotherapist (like Peter Dornan), and don't do things that increase your pain (yoga, sitting without a cushion, or whatever). Good Luck.

Don

[Laura]

Hi Blink,

Glad you have found this site and don't feel so alone. Sounds like you have a good plan going. I just wanted to let you know I too get big pain flares if I have too many bm's during the course of a day. I found ice works well with a flare. Good luck!

[carolynm]

It sounds like you have a great plan in place. I am adding yoga back into my life but modifying it at times. I believe my PN is caused by SIJD and the twisting of my back cannot be good for it.

You have found the right people to guide you on your journey. Let us know if we can help you.

cari

[blink]

Thanks to the good fairies who have responded overnight - I appreciate your help. I am off to see Peter Dorman and GP this week. I shall keep looking in and asking questions..... but will wait for more than self diagnosis before making a proper signature. Thanks again.

[little mo]

Hello and welcome to the forum, I am a little late in the wecome but I'm sure you won't mind.
Well, you poor thing, what struck me the most was how you felt finding that you were not alone with your symptoms and consequent pain plus flare ups, it is almost like a large concrete block has been lifted from your head!, you must have felt elated, yet nothing is fixed YET....I suspect there were a few noses you wanted to give a punch to also....as you say in your post you have been everywhere, had everything done ending in scopy and down the road around the corner to all the "in the head experts"!! at the same time as being normal you have had to cope with the pain.......you would think by now that these experts would recognise a set of symptoms and know the appropriate people to send sufferers to.
So sorry to have gone off on one but it certainly makes me angry now...I sometimes think of the middle ages , well they hardly knew the basics let alone the complicated, perhaps people didn't turn to their physicians then....almost like now, maybe they were scared of being labled mentally unstable. The patient would become used to that label as no one else would come forward with same symptoms, there was no hope for them then, Thank goodness there is now. There will be a different aura about you now, confidence will return, you will punch the air (to avoid someones nose) and you will probably feel like climbing a rooftop and shouting yeah yeah!!! I knew I wasn't mad these symptoms were real and more importantly to you they were also being experienced by several hundred others and yet you and me and all who have posted and all that have become better, the many who have a good drug programme and the hundreds who have found someone like themself have had to suffer that long lonely road to get here. I do wish you luck and good health and I just know you are feeling stronger now for finding us and will feel even stronger as time passes as your'e not alone and that (in my opinion) is the most important thing...keep us posted with how your'e plan goes, as with waiting lists maybe the Dr or surgeons secretary can give you this info.
Just one or two things I noticed, but one step at a time, someone rightfully suggested amytriptlyne as a useful drug, it has a unique combination..(I am by no means a medical person) It has the power to keep most nerve endings under control in m.g. strengths up to 125, so a patient is usually started with 10-25mg each night ,,after sometime it can be increased at the joint descion between Doc and patient, from where I have read you leave it is most likely you would be prescibed cymbalta....Amytriptlyne on a much higher dosage acts as a very efficient anti depressants It's also compatable with almost all drugs..there will almost always be someone around be to help with other problems, hoping you never feel lonely again
little mo xxxxxxxxxx

[Ezzl]

Hi Blink,

I live in sydney n see prof Vancaillie. Pls pm me n I can give u my email n mobile num and chat to too if u like As I have had he nerve release once an am entrapped again waiting further surgery.
ErinO

[blink]

Thanks for the welcome Little Mo ..... and yes part of me is angry over wasted time,money etc but the other part of me is so pleased I am such a stubborn researcher! I loved your metaphor of punching the air rather than noses. I must say I've fanatasized about writing this all up and sending to each practitioner I have been to ... maybe the idea of it is enough!!!

I was interested in both you and Don writing about Amiltriptyline (which I know as Endep) ... I was put on a combo of it and Lyrica ... but only 25mg of it (at night) and then increased Lyrica until 75mg day & night ..... each time I increased dose it worked for a while then I was supposed to up the amounts - however I got to the point where I didn't think I could increase dosage and still operate in the world. I was also having weird shock like myclonic jerks when trying to go to sleep & sleeping for 10+ hours so I gradually went off the Lyrica - maybe I should think about increasing the Endep??

Thanks also to Laura for the ice trick - it has already helped me, especially getting to sleep.

Am off to Peter Dorman tomorrow & waiting for phone back for an appointment with Vancaillie.

[blink]

Hi Ezzl ... didn't see you there before. Have sent you a pm and hopefully you'll receive that.

Unfortunately Professor Vancaillie is no longer seeing anybody outside of New South Wales.... perhaps I'll have to temporarily shift over the border! He has recommended Dr Peter Georgius from Noosa - wonder if anyone out there has heard anything of him ... couldn't find much about him on the net.

[blink]

A little update from me ..... I have been to Peter Dornan (physiotherapist) three times and he confirmed involvement of the pudendal nerve. Not sure yet whether entrapped nerve or stuck in a neuralgic cycle as I have very badly functioning sacro-iliac joints. I have been sitting on the cushion, and doing all of his exercises 2/3 times a day and have a marked improvement in the amount of pain so at the moment I am one very happy vegemite. For me just knowing .. or naming the cause has been a huge bonus. I know that I've has periods of approx 2 weeks without pain before so am reserving judgement but at the moment I am optimistically hopeful!