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  • #46
    Kara,

    You are always SO compassionate to everyone and listen/read about our problems so well. You should be a counselor out of this. You are doing so well at answering others' questions and concerns. God gave you a wonderful gift, Kara!
    Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

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    • #47
      Thank you April,

      That was very nice of you to say! You kind words are very uplifting today!

      Hugs to you!

      Kara
      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 These are old and my ICN Patient story is very old and outdated.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


      • #48
        RE stay after surgery

        When my son and DIL had their first child, the baby had to stay in the hospital for over a week. They were moved a time or two while they stayed from one room to the other. The hospital said that if they had a charity room empty they would let them stay in it for a short while until the baby got ok to go home. Maybe if you would talk to the hospital administrator, they would consider doing that for you. It really would be worth a try. Most hospitals have charity rooms for people without insurance. Hopefully one might would be vacant for you if you let them know your circumstances. Just a thought. This is the only time I have ever heard of it, but you wouldn't know unless you asked.

        Hope your surgeries go well. My prayers are with you.

        JJ

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        • #49
          Clitordynia

          Oh, so there is a name for this which I just found on the web. I have IC and vulvodynia and in the last few days a CONSTANT throbbing and VERY unwanted sexually stimulated feeling in my clitoris. I am SO embarrased about this and was hesitant to post. Does any body have any history of this or treatment success in getting rid of it. Is it FOR sure caused solely by Pudendal Nerve issues? I read on a previous post on this thread that the only way to get rid of it is surgery. That really made my heart sink!!!
          Is there any way that really good pelvic floor Physical Therapy where they work internally etc could help?
          It is the WORST feeling, like an unwanted arousal all the time. I feel disgusting inside!

          Medications:
          Elavil 30mg at bedtime, clearly not helping my Vulvodynia.....
          Diagnosed with IC 6/05
          Developed Vulvar Pain 8/09

          Medications I am on:
          Elavil 25mg at bedtime

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          • #50
            sorry you guys are having to deal with this.
            sending prayers and positive energy your way.

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            • #51
              Those sound very similar to Pudendal Nerve Symptoms.....................................

              Check out the sticky attached to the front of the Pudendal Nerve Condition page.

              Here’s a Comprehensive Website that gives you Everything you wanted to know about (PN), Pudendal Neuralgia (PN), or Pudendal Nerve Entrapment (PNE) from what it is, some Facts and Questions from patients, what the symptoms are, diagnosis, treatment Options, for example it goes into detail regarding such topics: Lifestyle changes, Medication Management, Physical Therapy, Botox, Pudendal Nerve Blocks, Pudendal Nerve Decompression Surgery, Neuromodulation and information about the Intrathecal Pain Pump. The site even talks about Emotional Aspects that go along with having PN/PNE, the Anatomy of the Pudendal Nerve, Related Conditions that have very similar Symptoms to IC, A List of North American Doctors who diagnose and treat PN/PNE, a list of Physical Therapists who treat it, Personal PN/PNE Stories, and even a Pain Scale. The link to this website is as follows:
              http://www.pudendalhelp.com/home.html


              Thank You to the Doctors and Administrators who put this site together.It is to them that I owe the greatest gratitude for putting it up on the web for all Chronic Pelvic Pain Sufferers to view. I have used it in a forum that is just learning about PNE/PN as it has become increasingly similar to those of us that also have Interstitial Cystitis. Thank you for putting together such a comprehensive site. It’s a lot of information but it could save an IC person from getting their bladders removed which is very drastic and in my case as well as many others, we may not have known what caused the pain because it was so close to the bladder that Doctors had and currently have trouble not seeing other possibilities for the their patients. I want to bring this to the table and forefront so that they all take one more step before drastic operations. This is meant for patients and doctors to start discussing this disease together as a team.

              So take a look and print out any information you feel may help you and your doctors in your quest for pain reduction.


              You are NOT ALONE! I had similar symptoms and had the PNE Decompression Operation in May. I've gained the ability to sit for 4 hours at a time on a good day as well as reduced clitoral symptoms and most recently a reduced pain upon having a bowel movement. I did a lot of research before having this surgery and I'm grateful that I did the research because it has saved me from worsening symptoms. It takes up to 2 year to heal from this surgery so the results are slow to come. It takes a lot of patience and will to keep going. I am on month number 8. I pray for continued relief of other PNE symptoms and pain relief for my future. ONE DAY AT A TIME!!!!!!!!! ONE HOUR AT A TIME!!!

              Kara
              Last edited by Kara29; 11-29-2009, 05:57 PM. Reason: adding site into
              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

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