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Urodynamics and Incontince

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  • Urodynamics and Incontince

    I have been having bouts of incontinence about twice a week for a few months. The type of incontience neither fits stress or urge and I 19, so I know this is not something to do with aging. My urologist said that is this goes on for another six to eight weeks he wants to do some urodynamic testing.

    When I first started having interstitial cystitis-like symptoms, I had urodynnamics done when I flew to the Mayo Clinic, but it has been a few years.

    I am hoping the inconience will clear up, because I really don't want to have anything to do with a cathader. On the other hand, if it continues, I want to see what the test will show.


  • #2
    Amanda~he wants me to start going thru these tests too but I'm like you......... don't you dare come toward my urethra or I might have to hurt you cussing I'm at the point where I don't have a clue what to do. He believes that when I had my bladder suspention done they stitched it up too hi and he wants to lower it BUT if he does, there is a 20% chance of leakage. Don't wanta go that way either

    Each night I pray that I will wake up the next morning and the real me will be backkkk

    sending tons of understanding hugs~
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


    • #3
      Hi Amanda,

      I went to the Mayo Clinic years ago and they said it was just all in my head. I knew it wasn't Because I was in so much pain and I was feeling, tired and very sick for many years.

      Maybe you should ask your Dr. if you have this:
      Autonomic Dysfunction of the Urinary Bladder read about that at and click on the paper by Roy Freeman, MD "Treatment of Peripheral Autonomic Dysfunction of the Urinary Bladder (Part Two)" Harvard Medical School.

      There is treatment for this and you should ask your Dr. about this. I had this disease and take medication for this. "Armour Thyroid"
      It turned out I had a long time deficiency of thyroid hormone. The name is Hypothyroidism. I had this since I was a small child. Before I was treated for this, I was probably the worst case they had ever seen. I want to help others before they get as sick as I was.

      Hypothyroidism and IC have many symptoms in common, and personally I think they are really the same thing. Confusing for Drs. and patients!
      I have been trying to get others to believe that OAB, IC are really just symptoms of Hypothyroidism. Let me know what you think after you have read about this. At least some one else out there may have this disease and get help.

      Some of the symptoms of Hypothyroidism are depression, feeling cold particularly of the hands and feet! feeling tired easily, migraines, fibromyalgia like pains, more infections like colds and uti's, puffiness and swelling, dry skin, shortness of breath and asthma, constipation and IBS, dry membranes as lack of saliva,tears,and vagina. Urinary difficulties. Do you have any of these symptoms?

      I found out that the lack of proper thyroid hormone caused me polyneuropathies of my "Autonomic Nervous system". This means I have severe nerve damage throuout my entire body. The autonomic nerves are the ones that control the muscles going to the lungs, heart, bladder and intestines. This caused me the cystitis, severe constitpation and bowel damage, asthma-like symptoms.

      The other nerve damage I had was to my distal nerves in my hands and feet. I had severe carpal tunnel syndrome and severe sensory nerve damage, causing severe burning nerves in my hands,feet,urethra. The healing of nerves takes a long time and causes severe pain.
      I was a real big mess, amd I still trying to heal
      Drs. don't know if my nerves will heal the damage is just so bad. Perhaps I will always live in pain.

      Boy, Amanda I was a real bad mess, it's a wonder that I'm still here. None of the Drs. were able to diagnose this, even Mayo Drs. Its a lost art!

      I hope you can make some sense out of this, I could write a novel about this, but I know it is happening to other people out there.

      Here are some other sites to look at that may help you and type in Peripheral Neuropathy

      Please investigate this, and let me know what you think about it, I would appreciate the help from anyone, we need all the help we can get. Thanks in advance to others and please share your opinion, I would like to know if I am the only person who has this. Thanks

      A few weeks ago I showed my medical records to a top pelvic pain Dr. and he looked shocked and told me I was "very rare". I said "No Im not" He was a strong Christian. When he left he seemed really troubled. I have been praying for him and me both!

      Never give up, I believe some prayers get answered!

      Remember I am not a Dr., and I am not giving medical advice, I have "no" medical training. Please check with your own Dr.


      • #4
        grouphug kissing hi
        hope ityou feel better soon....
        'The will of God will never take you where the Grace of God will not protect you.'


        • #5
          I hope all of you feel better soon. I have an underactive thryoid, plus ic and overactive bladder. silver fox, I enjoyed reading what you had to write and some of it now makes sense to me. I do have migranes and depression and cold hands and arms. they found out I had a thryoid problem 10 years ago and I am on meds for it for the rest o fmy life. Thanks so much for the information. amanda hang n there, there is hope...
          Hang in there , There is hope.
          There is hope. Prayer works.

          Love, Debbie


          • #6
            I'm really interested in this since I also have severe pain in my hands written off as arthritis. What tests are done in this case? Blood tests?



            • #7
              Deb, it's good to hear from you. Hope today is a better day for you.

              Recently, I have noticed that you mentioned the name of the thyroid medication that you are taking. I can't remember, hi but I thought its was Levoxyl or Unithyroid. Not all thyroid medications are the same. Some of them have only one hormone, T4 and maybe you need to add some T3 to your thyroid treatment.

              The correct dose and the addition of T3 can be life changing. My Dr. told me that I have been undermedicated with my thyroid hormone. He has increased the amount I take to 3 1/2 grains. I am doing much better. I take the natural form of thyroid that is made from the thyroid of pigs, called Armour Dessicated thyroid. It has several hormones in it, the most important is T4
              and T3.

              The T3 is many times more powerful in energy and is ready to be used by the cells in your body immediately. Some of your cells and body tissues need T4 (they do not want T3) whereas other tissues must have T3 and some research says that T3 is vital to certain tissues. This research says that a T4-only med isn't enough.

              When people take a T4 their body is supposed to change it to active T3 and for some this is not true. The people who take T4 only and have difficulty converting T4 into T3 are called "poor converters". Thats why I remain Hypothyroid on the T4-only Thyroid med.

              You must not be correctly treated for your Hypothyroidism. By all your symptoms, you are saying that you remain Hypothyroid. When my Dr. increase my thyroid this past year my Migraines vanished, I was no longer cold and now have warm hands and feet, my shortness of breath asthma is gone. This is only my opinion but you need to talk to your Dr. about this.

              Perhaps you are like I am, a "poor converter"

              In people with hypothyroidism often have a mild peripheral neuropathy, it is relatively common and may cause nerve damage all throughout the body. Some damage is to the nerve cell axon, its protective coating I may have this and also I think I have sensimotor damage, and Autonomic nerve damage.(to the bladder, intestines, lungs). The sensimotor damage is to the small pain nerves in my fingers hands, feet and urethra, bladder.(numbness burning pain) Some patients complain of voiding difficulties, and some patients have urinary frequency, urgency, and incontinence.

              I don't know if you have this, but learn about this and ask your Dr. about the possible link between Hypothyroidism and the bladder. Millions of people are Hypothyroid and untreated.

              I have read people who have minor nerve damage may recover from the nerve damage if not very severe. Diabetes also causes nerve damage, sometimes to the urinary bladder.

              Debbie I have had Hypothyroid nerve damage since I was a baby so it's not known if my nerves can recover. Any improvement in my health is important to me. Everyone who has this is different and the outcome is unknown, but maybe with research they will learn how to heal the nerves.

              To All: Please Study and discuss this back here on the forum. I would like to have your opinions and what you think about this condition.

              Thank you Deb, Like you always say "there is hope"

     type in peripheral neuropathy

              This is what I learned that happened to me and I hope this helps another person hi
              Remember I'm not a Dr. or a medical person, just a patient. Good luck, and you are in my prayers.


              • #8
                I had a thyroid test come back abnormal a few months ago. My TSh was like 7.5. I took synthroid and felt like crap, then I had my doc give me cytomel which is pure T3. I took it for about a week and noticed nothing.I stopped taking it and had another thyroid test done a month later. Including TSH, free T4, free T3 etc. and everything came back normal, actually in the lower level of normal whcih is good. I take no meds now and I'm gonna have another follow up test done as soon as I can get there. My doc says I do not have thyroid disease it was just a freak thing.



                • #9
                  Hey Christa, good to hear from you today!

                  Yes, Christa, hypothyroidism did cause me severe arthritic-like pain in my hands. When I asked the Drs. they always called it arthritis. Instead it was slow and progressive nerve damage due to the lack of oxygen and nutrients getting to the nerve endings. Without oxygen and nutrients, the nerves slowly die. Mild polyneuropathy may develop in persons with low thyroid hormone levels.

                  There was nerve damage silently occurring all over my body, affecting the autonomic nerves. Those are the nerves that control the bladder causing urinary pain and frequency, intestines causing constipation and bowel difficulties, and the lungs causing me to later develop weak poor breathing. It can also affect the nerves to the heart that I don't know about yet. Nerve cells cannot be replaced if they are killed, but they are capable of recovering from damage. The amount of damage and a person's age and general health are important to recovery. Nerves grow slowly from the spinal cord on out and it can be from weeks to years.

                  My earliest memory of bladder frequency was from school, my teachers complained to my parents about my need to use the restroom too often. During this time I was developing other problems, low energy, poor concentration, extreme intolerance to cold, migraine headaches with food sensitivity, lack of coordination, arthritic muscle pain throughout my body like fibromyalgia, carpal tunnel syndrome in the hands, dry itchy skin, very susceptible to all infections, shortness of breath, asthma-like symptoms, and later severe menstrual bleeding and cramps, and the cystitis without infection. (OAB or IC) Also, I had premature gray hair that is now all silver.

                  Yes, of course, the normal thing is to do thyroid blood tests. Here is where a big problem comes. With many unfortunate souls the tests show no problem, just fine, normal. For that reason, no one suspected this was happening to me. I was told by an older family member that for me it is genetic. My mother and two sisters are also hypothyroid with cystitis. The only way my Dr. said was to just try some natural thyroid to see if I would get improvement. And we did! Now the only thing I am left with is the burning nerve pain in my hands and feet.

                  I was very severely affected. I am not familiar with the tests where you are so you need to talk to your Dr. and I am not familiar with medications available to you. It is really important that you find the right dose and If you need T3 in your treatment.

                  Hope this is helpful this is just my story and what has happened to me. I am still searching for information and help. Say a prayer that my nerves will heal, I just want to know what it is like to have no pain.

                  Please keep in touch Christa, and I hope you find the help you deserve.

                  Remember,I am "not" a Dr. and I am not giving medical advice, I have no medical training. Please always check with your own Dr.


                  • #10
                    Hi Kenzy,

                    Your TSH tests are in the hypothyroid range. I think you should ask for a copy of all your test results and get 2nd opinion. Most people have good luck with GP's or Internists for help. Some times you have to go further and try many before you get help. If you and your Dr. get along, go back and ask him again for help with this. What are all of your symptoms, I'm curious?

                    My own thyroid tests were never very helpful, and I am lucky now to finally have a Dr. who is treating me as much by my symptoms as well as the tests. I tried Synthroid, a synthetic T4 only thyroid for six months, and I became very cold and Hypothyroid on it, and said Im going back to my favorite natural thyroid. I have never tried cytomel a synthetic T3. I did try the Synthetic thyroid drug T4 and T3 and I had heart palpitations with that one. That didn't feel so good.

                    On 3 1/2 grains of natural dessicated pigs thyroid I have none of this, and most of my symptoms are gone. I now have burning in my fingers, soles of my feet and urethra with frequency. It is steady searing burning but it has changed from time to time in intensity. My Dr. tells me the nerves will hurt more when they are healing.

                    It's difficult to have this for so long and I have always felt so alone I don't talk to others about this, they would not understand. When I got a computer I found this site, a thyroid site, and a neuropathy support group. But really no one knows what a hell this has been. Years ago I considered a bladder removal surgery when they told me I had IC.

                    You can get several books on thyroid disease, my favorite is "Hypothyroidism the Unsuspected Illness" by Broda O. Barnes MD.

                    Kensy, good luck getting your Thyroid troubles solved. You will be okay, make them help you.

                    Remember I am "not" a Dr.and I am not giving medical advice, I have no medical training. Please check with your own Dr.



                    • #11

                      To Silverfox, received your email. Tried to email you back twice, but my insane server says they cannot find your email address at, sorry if you don't want this known, [email protected] address doesn't exist! There is either something wrong with me or with me computer or with my server! Please try to email me again. I would love to talk to you and since, for some reason, I can't seem to get an email to you and yet, you can to me, if all else fails, send me your phone number and I will call you directly. At least, I know my phone company and my long distance work! Is your email perhaps a satellite system?
                      mary jiminez