Another Gold Coaster

[marytherese]

Firstly I must give a bit of a rundown on one of my other serious medical conditions. I have Cauda Equina Syndrome and the onset of that was in the 1970s, if you have never heard of this condition I suggest you look it up. It affects me with the bladder (self catheterise), bowel (Megacolon and self evacuation, take 6 Coloxyl and Senna, 2 heaped teaspoons of Normacol and Actilax for them), sex, and muscle wasting more so in one leg than the other and chronic pain. In Mar2009 I bought a treadmill as a Vascular Specialist said I needed to implement a walking program, well thats when the Perineal Neuralgia begun, when sitting and also standing, it does not interrupt my sleep. As I have pain in buttocks and thighs when sitting I thought that the new Pain was a continuation of what I already experience. I asked my Gyno, Urologist, Neurologist, Colorectal Surgeon ,GP as to what was causing my new pain, no one could give me an answer. In early 2010 I discovered by accident that if I Lifted my Buttocks the pain eased, but one cant go around lifting their buttocks all the time it would look a sight. Finally in Dec2011 my Neurologist said it was the Pudendal Nerve and ordered a Pudendal Nerve Block for Jan2012, I can say that it did give me some relief for about 4 days and then it was back to its old self. I have read on a site from Sydney that one Cannot Ever strain for their bowels or urine, well that is out for me as I need to strain my bowels. I cannot take strong meds because of my bowels. I am currently doing physio exercises that a Physio on the Gold Coast got from Peter Dornan, they do ease the pain a bit for a couple of hours . I do not think I would be a candidate for the operation owing to my Cauda Equina Syndrome. Has anyone on this site got relief from any other treatments. Like I say I have only started the Physio and maybe a Miracle will happen one day, how wonderful that would be. Thanks for Listening

[helenlegs 11]

Hi there marytherese,
Welcome to hope
Do you take any pain meds at all at the moment? Something like gabapentin or pregabalin/lyrica and an antidepressant like cymbalta can often help the nerve pain you are now experiencing with PN.
Tramadol is another pain med I take but it can cause constipation, so no good for your other problems.
A non drug therapy which also can help is ice, especially if you have any burning sensation but can help with any itching, prickling too.
The other thing that helps (me anyway) a lot, is pacing and not sitting when possible. If I have to sit I try to make sure I am on my better cheek or put my worst leg up or out. Many people recommend particular cushions either available on line, although many people home-make them individually to suit their problems. Hope this helps.
I have a question for you as a cauda equina sufferer, did you suffer from any or much pain from this?
I know you will find tons of help and information on the home pages here and from people who are in a similar PN situation. Sorry you had to find us but very glad that you did.
Take care,
Helen

[marytherese]

HI Helen Thank you for tips. In the years prior to my Pudendal Nerve problem I have been on Endep at times for my Cauda Equina Syndrome, this only makes me have a better nights sleep and stops the tossing and turning, it did not help with my CES. One doctor suggested taking the Endep in the daytime as well but it makes me very sleepy so discontinued that. For the Pudendal Nerve I have taken Lyrica which didnt do a thing for any of my pain. In Dec2011 my Neurologist put me on Durogesic Patches and Avanza, but owing to my bowel could not up the strength of the patches so therefore ceased them as the low strength didnt help. The Avanza hasnt done a thing either so this week I started weaning myself off them as I have been gaining weight since Dec .All the Avanza did was help my depression, as Pain really drains you. Yes I will be looking into buying a cushion but that will only help with sitting, the pudendal pain (burning/raw pain) is just as bad when I am standing. The only thing I find best for me is lying in bed on my stomach for both the CES and pudendal nerve, so during the day I have some time out from the pain by lying down in bed. The pain from the Cauda equina syndrome affects my buttocks, thighs and feet . One Specialist suggested a Sacral Nerve Stimulator but if you have one of them implanted you can no longer have MRIs and I need to have MRIs from time to time for my lower back and other problems that may arise, the same goes for a Spinal Cord Stimulator. Hopefully doing the stretching exercises something may come out of them, I can only Hope.

[gcman]

Hi marytherese
I see you are doing some physio exercises that came thru' Peter Dornan. I switched physois to Peter and found its worth a weekly trip up the M1 to Brisbane for manipulation and his monitoring my exercises. Seems I am improving after 4 weeks so intend to keep it up.
gcman

[helenlegs 11]

Yes marytherese, my best position is lying face down with one leg at an angle (frog like) and the opposite hand shoved under my hip bone (until it almost numbs, then swap It's ridiculous isn't it! Although when I think about it a lovely warm bath with bubbles and a glass of crisp white is rather good too
Take care,
Helen

[Aussie-m]

Hey there marytherese just reading your situation , i can't give any real advice , except i found that a number of therapists only treat the symptoms not the cause , that is because they do not have all the diagnostic skills , i am from the GC and i have not found anyone who has all the diagnostic skills , there are some who have some , but it is like a incomplete tool box , if you only the treat the symptoms you get temporary relief but not permanent , it just seems like you are on the never ending treatment plan , great for the therapist , not much joy for you . Have a think about that , a neurologist on the GC gave the best advice and that was to learn as much as possible as you can about your condition , at least you will have some control , and eventually you pick the pretenders much easier , i am bewildered at how many doctors and therapists out there who pretend they are skilled in this area . There are some out there with some good skills but the diagnostic skill set is incomplete , you may have to see more than one therapist to get a complete picture , and the right treatment plan .
it would interesting to know who the neurosurgeon was , who knows about PNE .
well take care for now
Aussie-m