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MRI and Pudendal Nerve Entrapment

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  • MRI and Pudendal Nerve Entrapment

    My MRI came back showing nothing but the huge cyst on my left ovary that continues to get bigger. It's up to 5 cm right now. My MRI did not go well. I had to be put to sleep because the pain on my tailbone was too horrendous to lie on top of for 2 and 1/2 hours. I went in at 7:30AM and was done at 2PM. They had to keep stopping the MRI because I was in too much pain and would not stay under the anesthetic. They tried to put me to sleep but it wasn't working. They also tried to control the pain with Fentanyl which is the only narcotic I respond to with respect to pain other than the urethral area which does not respond to any meds and in fact often gets worse with medications.

    Even though the MRI showed nothing abnormal besides the cyst, did not explain the massive tailbone pain, I have been officially diagnosed with Pudendal Nerve Entrapment with the possibility of Vetibulitis and Vulvodynia. Plus the Ovarian Cyst, Massive Abdominal adhesions, and Endometriosis. I have an appointment with the Chronic Pelvic Pain Specialist next week. The pain in the tailbone is so bad that they are thinking of putting me back on Fentanyl patches and break through ACTIQ lollipops. I don't want the patches but the lollipops will be ok for as needed use. The doctor is calling me tomorrow about it. I am still planning on going to NH in March with My Husband to do the final test for Pudendal Nerve Entrapment and discuss what my options are. He is the Surgeon that does the PNE Decompression and Vestibulitis Surgery. That most likely will be held off until after my Sister's Wedding and my Mother's Lumpectomy and or Mastectomy/Reconstruction.

    The origin of the pain may have been Pudendal Nerve Entrapment from the start in 1999 which would explain why the Bladder Removal, Urethrectomy, and Indiana Pouch did not help the Urethral Pain. The Pudendal Nerve has been squashed all along. I still had End Stage Refractory IC with a bladder the size of a walnut, non-functioning and had to have both the Cystectomy and Urethrectomy/Indiana Pouch. Those surgeries were still needed regardless of the Pudendal Nerve Entrapment. This just explains the left over pain better. It wasn't phantom urgency like we originally thought. It was really caused by the PNE.

    Life goes on! I'll just keep marching ahead!

    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
    Does it look like you might be coming to Houston?????
    I'll get the room ready for you. At least they have narrowed it down and hopefully with the surgery can repair it. I know you have been in so much pain. Go home for a few days, spend time with your wonderful husband, rest, and then you will be able to regenerize. You have a lot on your plate right now but with everyone's support.....we will get you there. We are all pulling for you and praying too!!!!
    Miss Bessie

    Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

    Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

    Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life


    • #3

      Sorry that the MRI was such a horrific experiance! At least it is over now and they have the information they need to proceed. I hope that the Fentlyn and Actiq will control the pain.

      I think going home is a great idea. You definately need your rest right now! I am sure Allen will take good care of you. Get all the rest you can.

      I hope your Mom is doing okay. I am sorry I have been MIA this week. It has been a rough week here, (too much to go into now.) But, as soon as I can get thru this, I will give you a call.

      Sending hugs to you and your Mom,



      • #4
        I am glad that they know what is wrong with you and are working on it. Both you and your mom are in my thoughts and prayers. Hang in there. We are all her for you, lady!

        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


        • #5

          Been thinking about you! I was wondering if you would end up in Houston. If so will definitely have to come and see you - you are just a long car ride away - very much worth it if you ask me!!!!