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Bad Patient

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  • Bad Patient

    I've not been on lately because of my Mother the Weddings, and myself being so sick. To put it all over the edge.......

    My Husband is very sick with a Prostate Infection. This has never happened before. I can't get his fever to drop. He's normally 97.6 and it's been 102.1 for two days now. He's not drinking, eating, or sleeping and out of work for the rest of the week at least. We may have to go to the hospital if the Cipro our primary prescribed for him doesn't start working. He's in so much pain. It's killing me to see him suffer the way I do. NONE OF US DESERVE IT. We are awaiting the culture results. You know how that goes!

    I am also really upset about some treatment that my Pudendal Nerve Specialist wants me to do. Anyone that knows me, knows that I've climbed over the highest mountains to get myself some relief. I am just so stuck on this Pelvic Floor Therapy. Partly because I am in so much pain, I can't imagine being in more pain and I just don't feel right about this. One of my specialists telling me that he will NOT consider the Decompression Surgery for my PNE ONLY until I've done at least 3 months of aggressive Pelvic Floor Therapy. (3 times a week) I feel like a trapped animal because he won't help me unless I do it. It's been 5 years many, many Urologists in my local area and I still don't have a general urologist in my area let alone someone that even knows what pelvic floor therapy is. AND NO ONE knows what PNE is. I can't even touch myself down there..........I am speechless and very sad. My nerve blocks are done. They say that if you sit on your Pudendal Nerve when it is this damaged, that it will only become more damaged and virtually impossible to decompress. So I feel that the more time that passes, I could have done something about it already. My neck and tailbone are still on fire and we have no ideas as to what that is. I did go to a Neurologist but he seems clueless. He is having me do an MRI on the 21st of May that I will be put under general anesthesia for. I don't want to do it and feel that it is useless, but he may just find something. It bothers me that he can only do it on one part of my body (the neck) and not the tailbone as well, but we already know that the tailbone is not right because of the PNE.

    My Sister's Quilt is done and Sharon's is just started. My Mom is in good spirits for what she is going through. It's been very emotional for her up to this point rather than pain and tiredness. Emotions are so exhausting.

    I am having a really emotional night. I am worried to death about Allen and tired from running around.

    I fully explained my reasons for not wanting to do it and he firmly put me in a place I feel I have no choice of now. In 9 years of doing therapy, medication teatments and procedures AND surgery, I've only turned away ONE of them!!!

    I will go on but I am so tired and upset about not being able to have a say in my treatment plan. This was the ONE surgeon in the US that can actually do the surgery so I have to do what he tells me to do or he won't decompress me. Finding a Pelvic Floor Specialist to touch me in my local area for 3 months, 3 times a week, will be the hardest battle over all.

    I guess I am just a BAD Patient all around.

    Do people actually go into the hospital for being exhausted????
    Last edited by Kara29; 04-11-2007, 08:47 AM.
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at: and

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  • #2
    I want so much to help you. I hope things in your life will ease up a little so you can get some rest.

    Sending more hugs your way,
    Stay safe

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    • #3
      I am so sorry......
      Meds I take:
      Elmiron, Elavil, Vagifem- for IC
      Albuterol, Flovent, Atrovent- for Asthma and lung problems
      Paxil, Clonazepam- for depression and Anxiety
      Atenolol- for rapid heart rate
      Nexium- for Gerd
      Levothyroxin- for Hypothyroidism
      Lasix, Pottasium- for edema
      Lipitor- for High Cholesterol
      I coated aspirin
      02 at bedtime


      • #4
        I have been to a PNE expert team in Houston who does the surgery. They don't require PT before surgery. I went thru a test called Pudendal Nerve Motor Latency Test and a pudendal nerve block under a CAT SCAN.

        I know it is terrible to travel as you are in pain, but it might be an option. (There are medical flight services which donate private plane rides and some on commercial airlines.) Actually, a group of French doctors are the top experts in this area. Some of the numbers as far as medical research are still low on the exact verdict of PNE and treatment of it. If you have any questions, please let me know. I hope your husband and mother return to good health, and wish you the best on your PNE treatment.



        • #5

          First of all you are not a bad patient. You have been through enough doctors and other stuff to know what your body can and will tolerate. Any doctor with half a brain cell would know that and would take your concerns into consideration. It is obvious to anyone that you know the pros and cons associated with this surgery and are prepared to deal with that.

          I am sorry to hear about Allen. I know that has to be incredibly stressful for both of you since neither one of you are used to him being sick. I will be praying for you and him and the rest of your family.

          And yes - people do go into the hospital for exhaustion!! It is usually becase their body shuts down.

          Please take care of yourself.



          • #6

            Yes.. you are definately NOT a bad patient... THERE is NO such thing.. Many would like to believe this to be true. I mean, how much easier is it to make a diagnosis, when you claim the person does not have a problem.. but that a problem has them? So please don't let others laziness make you feel that you are a bad patient. EVEER! That's there job! They get paid RIDICULOUS amounts of money for it... crap... they can at least PRETEND TO CARE!!! Sorry, I haven't had much luck with doctors. I'm bitter. It's obvious. Sorry. PS I have wound up in the ER FROM my untreated IC AND THE UTTER EXHAUSTION in trying to deal with it all, and find answers. No one believed me. I didn't have a diagnosis. I was always a waste of time and space. So I don't recommend it. Wish I could be of greater service, but I think I am far too bitter on this one. I wish you MUCH MUCH MUCH MORE LUCK and respect from them all.... all the best.... warmest regards... and heres an too!
            Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

            Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

            Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.