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  • Margaret-Sonoma
    replied
    HI Golden Seals,
    I don't have much time today to respond to you, but I think if you used to ride a bicycle alot, you could have this pudendal thing. Did you try to go back to Jill Osborne's story where this doc in SF linked electrode to her ankle and stimulated sacral nerve 3, which also innervates the bladder somewhat? Now that I am convinced that what I have is nerve damage, I eat anything I want to, with no further repercussions on my "bladder". What I think is that when we first went to our doctors and told them we feel like we have to pee all the time, and get relief while sitting on the toilet, they jumped to the conclusion that we all have bladder lining problems. Once we get put into that box, they try to heal the bladder lining, as if , for some unexplained reason, your bladder lining started leaking, got this disease, or whatever. All the focus on your bladder pointed you to websites for IC, but what if the nerves that go to the bladder are misfiring? My Urologist also went with the IC diagnosis, without any nerve testing. Nerve testing is tricky, as they insert a "finger" electrode inside your anus, stimulate the pudendal nerve right at the S3 as it comes out of your spinal column, then check for latency, as in if it takes more than 5 milliseconds for your nerve to then respond to the stimulus, your nerve could be damaged, surrounded by a fibrosis condition that keeps the nerve from passing the electrical signal on as it should. Our bladders aren't getting the proper nerve signals. If you have any discomfort while sitting, this is most probably a pudendal nerve problem. Sitting, now that we are in our 50s, probably exposes this poor nerve to more squishing pressure. When we were younger, our muscles probably protected the nerves more, or we just sat less, and never noticed painful sitting. Here we are at our computers, for hours, trying to find the answer to our "IC", and just by sitting here, you and I are aggrevating the pudendal nerve that has already been damaged by our long long bike rides. I lived on a bicycle from 18 to 41, no cars, shopping and doing laundry on a bicycle. I loved it, but did get numb on one side, lots. Nerve damage from all those years back is just now showing up, probably because I am less active, sitting more than ever. Let's talk more after I get back from a trip in mid-July. I threw away all my supplements, by the way, just keep taking Elavil, until I can get nerve assessment. Yes, I will bet that many many folks here on the IC website will eventually find out they have nerve damage that won't be fixed by supplements, diet, or will!!! Maybe we can start a thread for those of us with strictly nerve damage. Good luck with your days until we can e-mail again.

    margaret

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  • GoldSeals
    replied
    Originally posted by ads View Post
    Do you have a lower or upper spine curve. I have heard directly from an ortho doc that bladder problems can be caused by lower curvature (sp?) of the spine. You would need a very specialized doc to check out this out.

    The doc you are going to and have to wait for the procedure may be one of the few in the country doing the treatment. (I probably spoke to the same doc years ago.) The treatment being done has been replaced by InterStim, but may be just as effective except it makes the docs less money...

    ads
    Its the lower part of the spine.
    The doctor has never done it before, and is waiting for the equipment to arrive.
    So I maybe one of the first ones to test the procedure

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  • ads
    replied
    Do you have a lower or upper spine curve. I have heard directly from an ortho doc that bladder problems can be caused by lower curvature (sp?) of the spine. You would need a very specialized doc to check out this out.

    The doc you are going to and have to wait for the procedure may be one of the few in the country doing the treatment. (I probably spoke to the same doc years ago.) The treatment being done has been replaced by InterStim, but may be just as effective except it makes the docs less money...

    ads

    Originally posted by GoldSeals View Post
    Hi Margaret,
    Now im confused about this procedure.Thanks for your reply.
    All I know is that the doctor hooks an electrode somewhere in my leg near the ankle.There supposedly is another connection made also around the ankle.
    Now im not sure if this prudenatl nerve thing is the same as the tibial nerve treatment.Im going to have to do some research on this.
    I used to ride a bike quite a bit a one time.Now wouldnt this be something if it caused my ic?My spine seems to be developing a slight curve so maybe there is compression on my spinal affecting the bladder nerves.I sure wish I could find a connection that causes the ic.How many people here have rode bikes and have develop this?Or is it the compression of the spinal column that causes the icsymptoms?

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  • GoldSeals
    replied
    Hi Margaret,
    Now im confused about this procedure.Thanks for your reply.
    All I know is that the doctor hooks an electrode somewhere in my leg near the ankle.There supposedly is another connection made also around the ankle.
    Now im not sure if this prudenatl nerve thing is the same as the tibial nerve treatment.Im going to have to do some research on this.
    I used to ride a bike quite a bit a one time.Now wouldnt this be something if it caused my ic?My spine seems to be developing a slight curve so maybe there is compression on my spinal affecting the bladder nerves.I sure wish I could find a connection that causes the ic.How many people here have rode bikes and have develop this?Or is it the compression of the spinal column that causes the icsymptoms?

    Leave a comment:


  • Margaret-Sonoma
    replied
    Hi GoldSeals,

    If I were you, I would not wait until September to ......do anything!!! One of my beefs about this problem of ours is that we are all told to wait, and wait and wait, for appointments, medications, and now in your case, equipment. Try going to the International Pudendal Neuropathy Association. org website. One of the hallmarks of this nerve compression is relief while sitting on the toilet. Notice that one of the products on this ICwebsite is a chair cushion hollowed out in the middle. Also note that some recommended positions for "IC-bladder relief" is putting your knees to your chest, assuming a squatting position, or sitting on the floor spread-legged. Go to Jill's story, wherein she found a Dr. Marshall Stoller in San Francisco who used electrodes in her ankle to stimulate her third sacral nerve, and she responded well to this nerve stimulation. All of these pieces point to nerve damage or compression as the root cause of our IC. There is an interview on this website with Dr. Kenneth Renney from 2003, wherein he talks about his own surgery with Prof. Robert in Nantes,France. Now Dr. Renney is helping pudendal nerve entrapment patients in Houston, with similar surgery. If you have any discomfort upon sitting, at the computer while typing this, or in the car, or especially while on a bike, you too could have this pudendal nerve entrapment. I am finding that there are physical therapists who manipulate connective tissue and offer various stretching positions for this compression. The bladder symptoms that we think we feel are referred pain signals. The third sacral nerve branches and innervates the penis, the urethra, the anus, and the bladder. Good luck with your search. You really can almost self-diagnose with all of this information on the web. The doctors don't appear to have time (or interest) in pelvic pain, as long as they can give you a name for your disease. When I came across this Pudendal nerve information yesterday, it blew my mind. Intuitively, I now know I have nerve damage. I can feel it, I can sense it, and now I can go about getting myself competent help. Don't wallow too long inside this Interstitial Cystitis label. I truly believe that my bladder irritation is a result of improper nerve signals from my compressed pudendal nerve. I am trying to light a fire inside this community of IC sufferers, hoping to broaden their understanding of why the bladder is irritated. This whole bandaid approach of trying to treat the lining of the bladder, when in fact, the underlying cause may be ongoing nerve damage, this approach now seems a bit ridiculous. I can only speak for myself, but I am hoping to open more eyes to the possibility of damaged nerves giving us all bladder problems. And sitting problems, and sleeping problems....!!!!! I am happy to know that at least you read what I wrote yesterday, and perhaps others will look into their own symptoms and find the true cause of their IC>
    Best of luck with your search, your doctor, and becoming healthy again. I know we can all figure this out and help each other come to the right conclusions. Thanks again, Jill, for this invaluable website forum!!!
    Margaret in Sonoma

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  • GoldSeals
    replied
    Pudendtal nerve stimulation

    Hi Margaret,
    I will be getting this done in september as soon as the urologist gets the new equipment.Sorry Jill for going off topic.Maybe this could be placed in the section what I believe causes ic.
    Regards,GoldSeals

    Leave a comment:


  • Margaret-Sonoma
    replied
    HI Kara 29,

    I just reviewed the information you posted on Pudendal Nerve Entrapment, and I can't believe that this is probably what my problem is. I so thank you for pointing me to this new perspective on IC. I have been assuming that I have IC, but after reading all the information on PNE, and Professor Robert's research and surgical results, I am convinced that I have this problem. I rode a bicycle (no car owned) for 41 years, and know that I have nerve damage in my pelvis. I started a clinical study at Stanford for the drug amitriptyline, and tried to tell the investigator of my one-sided numbness, tried to tell him "it seems to be lateral", told them that I had scoliosis, and rode a bicycle for a very long time in my life. My side comments were ignored, as they viewed me as a great candidate for their NIH study, as in previously healthy, sudden onset of IC symptoms. I took their "placebo" for one week, knew it was a placebo, as in no effect on helping me sleep, and pulled out of their study. Now I am on amitriptyline, but feel the pelvic pain underneath the drug. As in, my bladder seems the same, but slightly deadened by the drug. I encourage other readers on this site to look into this pudendal nerve entrapment. It could be that a huge number of IC patients, with their various OTC remedies, and prescriptions are missing the boat by presuming that bladder pain is originating in the bladder. If I could shout out loudly to all you suffering from what you think is IC, I would direct you all to this new theory, pudendal nerve entrapment. So, thank you, thank you, Kara, for this breakthrough information. When I first began to read these threads posted on this website, I read Jill's story of recovery, including her treatment by an SF doc, who stimulated her S3 nerve, starting from electrodes in her ankle. Now, together with this pudendal nerve entrapment information, I see the beginning of the end of my "bladder" problems. All this searching just goes to show that we have to do our own research, and listen to the inner voice as it informs us. I wish you lived in California so I could hug you in person. Thank you, Kara, from the bottom of my heart and bladder!!!!

    Margaret

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  • kadi
    replied
    What a great idea! Totally cheered me up today

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  • Kara29
    replied
    JILL!!!!!!!!!!!!!! You'll get real sick of me on this one! I love this stuff!

    Thank you THANK YOU for everything you do for us!

    HUGS,

    Kara

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  • leelee88
    replied
    :woohoo: :woohoo: Your Awsome Jill.. I think laughter is just what we need around here... Just like the cat video you showed us... It was so funny.. Thanks!!!!

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  • icnmgrjill
    started a topic New Message Board - Favorite On-Line Videos

    New Message Board - Favorite On-Line Videos

    There have been so many great videos now on the web ... I thought it would be really fun to share our favorite music videos, funny movies, etc. etc. I've put some funny animal bloopers. I also put up a great Christina Aguilera video. What on-line videos do you love?? Are you a youtube junkie?? There are even some IC videos now on the web!

    http://www.ic-network.com/forum/forumdisplay.php?f=173

    Jill
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