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  • This is Scary!!!!!!!!

    I had a meeting with my pelvic pain specialist today regarding why I was left over with "urethral urgency" pain after my cystectomy and bladder reconstruction. He examined me last time (3 months ago) and told me that I was mistaken when I told him that my urethra was 100% removed. I tried to explain that over and over that my urethra was taken out and that NONE of it was left in. I remember before my reconstruction last May I talked extensively to my reconstructive surgeon about not leaving any of it in because I did not want trouble later on with phantom urgency. My reconstructive surgeon reassured me that he removed the whole thing after it was done. I had the operative notes sent to this doctor and he STILL thought I had part of my old urethra still in there. He wanted to schedule me for surgery to remove and resect the rest of this urethra that he STILL thought I had. I tried to tell him today that it did not exist to remove. I even had him look right at the operative report while I was sitting there and I pointed out the exact part of the operation that describes the full urethrectomy. He shook his head and said over again that I still had 2/3 of the urethra in there.

    I was getting ready to cry when I asked him if he would examine me again.

    He examined me again. looked at my Mom and said "SHE DOESN'T HAVE ANY PART OF HER URETHTRA...SHE WAS RIGHT!"

    At that point I almost jumped off the table to dance around the room half naked!

    What happened is that I have a false or hidden urinary tract that was not found during my operation. It eventually needs to be closed off. So he was going into the false tract when he examined me last time and this time he figured it out.

    If I hadn't insisted upon re-examination. I would have been headed for a very unneeded operation.

    IN THE END...........I have a Skene's Gland on the right side (the left one was removed) that right Skene's Gland is what is causing me that feeling of URGENCY. I am wondering if a Vestibulectomy would have been all it took all of these years. We still won't know until I have this done and that won't be until September. This is removed via a Vestibulectomy. He wants to triple check himself with my Surgeon before he goes on to help me with this THING that had run my life for 10 years. It's a relatively simple surgery compared to another reconstruction.........Hard to believe a tiny gland can cause SO MUCH Pain!

    How SCARY!!!

    I am absolutely tired right down to my bones.

    Kara
    Last edited by Kara29; 04-27-2007, 10:55 AM. Reason: spellling
    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:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

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

  • #2
    wow Kara thats a lot to digest. I hope that this next one will end your problems for you.
    'The will of God will never take you where the Grace of God will not protect you.'

    Comment


    • #3
      Wow! I am stunned! I cant believe you almost had to go thru another major op, when this total other thing could be causing the trouble! But, even still, it cant get my mind around that this false urinary tract isnt the culprit of the urgency. I seriously dont know WHAT to think! I am sure you are in the same boat! However, I agree that since the VV is a pretty minor surgery, I would definately do that first, (that is if they cant do them at the same time?) If the cant do it at the same time, then hopefully the VV will take care of things, but if it doesnt, at least you have a solid lead to go on and dont have to start over from ground zero again.

      I am still stunned! I am actually speechless! (And that's big for me! )

      I hope that things work out and your pain-filled days will be behind you soon!

      Hugs,
      Amy

      Comment


      • #4
        I would have been freaking out to...I am glad that the doctor thinks he has found what has been your problem.. I will keep praying for you and keeping my fingers crossed that the doctors will not stop until they find out whats wrong ...
        Hugs
        Ronda

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


        Link to Patient Handbook:
        http://www.ic-network.com/handbook/

        Diet Reference Sheet:
        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



        ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

        Comment


        • #5
          {{{{{{{{{{{{{{{{You}}}}}}}}}}}}}}}}}}}}}

          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

          Patient Help: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
          [3MG]

          Anyone who says something is foolproof hasn't met a determined fool

          Comment


          • #6
            Wow! That is scary!
            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

            Comment


            • #7


              What a fright you must have had! Sounds like despite this little blip, you are still headed in the right direction, though....
              ****
              Jen

              *Diagnosed with severe IC in 2004
              *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
              *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
              *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

              **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

              Comment


              • #8
                Oh Kara your determination always amaze me, I think I would had freak out from the beginning. I hope this doctor did find the solution to your pain. That would be wonderful.

                Sending hugs, Trishann

                Comment


                • #9
                  Does this mean none of your other surgeries may have been necessary?


                  http://en.wikipedia.org/wiki/Gartner%27s_duct This is a similar part of the anatomy I've never heard about. Wild.
                  Last edited by Moonheart; 04-27-2007, 08:57 PM.
                  http://www.TheCraftyEwe.etsy.com

                  Comment


                  • #10
                    My Gosh Kara, I hope and pray that the skene's gland removal will totally help. I'm still in shock the he kept insisting you had your urethra. You'll continue to be in my thoughts and prayers.
                    hugs,
                    Janie

                    Comment


                    • #11
                      Oh, my goodness! I hope and pray the removal of the gland and false urinary tract will eliminate your pain entirely - that would be so wonderful! I sure am keeping my fingers crossed for you!

                      Blessings,
                      Lori

                      Comment


                      • #12
                        All of my other surgeries WERE necessary. I had, refractory end stage IC with a bladder that leaked urine into my abdomen. It was only able to hold 30cc's with bleeding and one tiny ball of adhesions. Then the old urethra had too much scar tissue build up to catheterize. So yes everything was needed in order to live without a urostomy bag.

                        I just did not want to have another reconstruction. It's only been a year since I've had my Indiana Pouch.

                        The urethra issue was very sensitive for me so I could not wrap my head around the idea that I still
                        had one. Thank God it's not true.

                        A false tract is sometimes formed from scar tissue. It's just a hollow tract like a canal that isn't connected to anything structural.

                        Love and Hugs to you all! I hope you are enjoying a wonderful weekend!

                        Kara
                        Last edited by Kara29; 04-28-2007, 08:04 AM. Reason: adding information
                        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:
                        http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

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

                        Comment


                        • #13
                          The great thing about your experience at this last docotor's visit is that you:

                          1. were able to state clearly what you believed had been done
                          2. showed him the report stating what had been done, and
                          3. had the knowledge and courage to tell him to check you once again.

                          Now that's what I call taking charge of your own health care.

                          Good for you, Kara... *Applause Applause*...
                          Sharon

                          Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                          Where I can be found most days.



                          Link to the ICN Patient Handbook:
                          http://www.ic-network.com/handbook/

                          Link to the IC Diet:
                          http://www.ic-network.com/diet/


                          IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                          Comment


                          • #14
                            Wow! That was scary, huh? Thank goodness you were so assertive and persistent with him.
                            Kim

                            Diagnosed August 2001

                            Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                            Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                            I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                            *****************************

                            “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                            “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                            Comment


                            • #15
                              Kara, it just blows my mind how strong you are through all of this! I am so sorry this got so scary. I can't even imagine! I was terrified when I found out I had IC and you have had to deal with so much more than I. You will be in my thoughts and prayers!
                              Rachel
                              DX's:
                              IC; PFD; possible Fibromyalgia; IBS;

                              Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                              I've Tried:
                              three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                              Currently using:
                              Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                              Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                              I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

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