Health Organization for Pudendal Education

Kerry, how many years have the nerves been damaged? There are people who had surgery after 15-30 years who have gotten better from surgery so maybe you want to keep the possiblity in the back of your head if other treatments fail.

Good luck,

Violet

Kerry

First of all which Dr Emmanuel have you been recommended to see as there are many in the UK?
I haveent found any who have experience of inserting a Stimulator so far.....the actual insertion is crucial to the end result.
If I was you I would definitely seek a second opinion, I can recommend Walton Neurological Centre with Dr Sharma as head of the Pain Clinic and Dr Farah as Neurosurgeon for implantation..unless you want to go to Dr Van Buyten in Belgium....he really is the MAN.

Surgery as Violet has said has helped many people who are many years with nerve damage...so dont take everything said as Gospel please...take your time and learn as you go. If you want to talk to me let me know please.

Amanda,

I am curious as to whether over the 3 years that you have had the stimulator the amount of pain relief you receive from it has increased, decreased, or remained the about same. I am so thankful you are willing to share your experiences with the forum.

Stephanie

Hi Stephanie

Well it is very hard for me to evaluate how much of a percentage that the Stimulator has given me.....I can walk much better, I can stand up better but sitting is still not a good position for me....if I sit for more than half an hour then im in agony for hours later...I still use ice 24/7 to ensure some relief from the zinging in the bladder and vulval regions.....vaginally I struggle with no secretions which have to be supplemented manually...urination is painful, but i have less spasms wth the Stimulator. My overall pain levels are less so long as I dont try to do too much....if i sit I am in trouble for a few days!
However i can get around much better than pre Stimulation....I still have huge incontinence issues....depending on how long I sit!!!
I am about to embark on a long journey by car which is daunting....im dreading it to be honest....the rewards will be great but the effort will be huge...Ive packed so much ice and other methods to calm things down its hardly worth the effort!!!! My sister has just had a new baby and I long to see both Mother and baby...thats why Im making the trip....but once Im home again i will be useless to anyone for days!!!

My only answer to you is that I wish I had had a chance to try out the Stimulator years ago....the lack of Stimulation lost me many things that are irretrievable....my family ....they have move onwards without me! I have followed every protocol available and hav enow found one that allows me to be somewhat alive and normal....i have to be happy with what Ive got now and i am.....I have adjusted my life to allow for PNE pain...many cannot understand this adjustment but my cushions and ice are part of me forever!

Amanda,

Thank you for sharing these details. You are an inspiration to all who face monumental challenges each day, especially those of us with chronic pain. I wish you well on your trip and hope that your pain will be tolerable and your heart filled with joy when you see your sister and her new baby. I know that you have also lost so much in this PN journey and please know I am sending you my gratitude for all you have given us here at the forum including (but certainly not limited to!) information on your experiences with your stimulator.

My best,

Stephanie

Thank you Stephanie for your kind words, im all packed up now and hope for a good nights sleep before I travel tomorrow. I may not have internet access for a few days so bear with me if i dont respond too quickly to messages and posts here on Pudendalhope.org.

Ive been a little lacking in my updates lately, i need to catch up on those when i return. As the Stimulator is the latest treatment Ive had it is fresher in my mind so maybe thats why Ive reported on that more than other treatments...!

Life is good everyday....i want more of course like everyone but I have to pinch myself and be so grateful for the life i have now.....my previous being is not here anymore, but im more calm and controlled now even with pain...it is all about pacing!

Hi Amanda

The doctor fitting the stimulator is Dr Andrew Baranowski from London. Dr Emmanuel is helping with all the toilet problems and working with Dr Andrew Baranowski.

Kerry

i wasnt aware that Dr B was authorised to fit Stimulators....this is news to me to be honest, ive been away and need to do a little study about this...bear with me please. I would be cautious about having a stimulator fitted by a doctor who has little experience of this practice.

hello everyone,

well the week has arrived for my trial neurostimulator, i am going in on thursday. I have mixed feelings, nervous, excited and hope.

Will let you know how it goes.

Kerry

Best wishes, Kerry!
My thoughts are with you!
Warm regards,
Karyn