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  1. 09-10-2009, 02:49 AM #1
    ulsmws
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    New Here & Looking for Answers

    Hi,
    I have just discovered this forum and am anxious to dig in and read the past threads to learn all I can. I believe I have PNE, although I have not been officially diagnosed with it. It started 9 months ago while I was sitting w/ my dad in the hospital. He had a stroke & survived 9 days...I sat with him during this time. I started developing pain while sitting. It left like someone was cutting my left labia off, but they never finish the job. Here I am, 9 months later and the pain is worse than ever. I have it within 10 minutes of sitting down. And yes, I have a desk job. I cry every day & I am sure my co-workers think I am nuts. I have the same pain in the same place every single time I sit. By the time I get off work, I am in so much pain, it takes all evening, laying with an ice pack, to get it calmed down enough so I can sleep. (If I am lucky).

    I have been to my primary dr. who thought it was Vulvodynia but agreed it coud be very well be PNE. My OBGYN told me nothing was wrong with me and that she couldn't treat me b/c my pain is on the outside of my body. Went to an advanced OB GYN in Orlando, who told me I didn't have V or PNE, but some kind of back or hip injury. So I had a full set of MRI's, X-ray's, Sonagrams and bloodwork galore. Guess what? I have no hip or back injury. They could find nothing wrong. But the pain continues. My neurologist just wants to hand out meds. He is exaspirated with me b/c nothing works and told me to go find a pain management doctor..that he couldn't help me anymore. Accupuncture didn't work. Am currently seeing a chiropractor and am probably throwing my money away but I am desperate to some relief, as I have had NONE. I am going to my 3rd OBGYN today to see if she could help me or refer me to someone who can.

    I have also seen the list of doctors who work with PNE...a handful across the country and none anywhere near FLorida. I also understand that you need to have 3 nerve blocks before you go. Does anyone know of any drs in the Tampa area who give pudendal nerve blocks? I have no idea where to start or what kind of doctor does this? NOne of my doctors seem to know anyone.     Thanks, Michelle
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  2. 09-11-2009, 05:54 PM #2
    vm
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    I don't have PNE, but wanted to welcome you to the ICN. My comment should bump this back up to the top and hopefully someone who has experience with PNE can offer some input.
    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.)

    My IC story: http://www.ic-network.com/patientstories/kim.html It's very outdated now. 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
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  3. 09-14-2009, 05:24 PM #3
    Cat1961
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    Welcome to the Club

    We are all looking for answers here or we have found some to share. You are in the right place for some help. I am kind of new here but want you to know that I have found a lot of help and I know you will to. I know how you feel with the suffering and pain. I am so sorry you are going through this; I don’t know how we have all survived this awful pain. I have been so lucky to have this web page to find answers and reassurance. Cathy
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  4. 09-15-2009, 04:16 AM #4
    Kara29
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    My suggestion is to find a Pudendal Nerve Specialist on the list that is given on the sticky on this page.

    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.
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  5. 09-15-2009, 09:47 AM #5
    ulsmws
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    Thanks Kara, I have reviewed the list of doctors and unfortunately, there is no one even close to Florida. I was hoping maybe someone would know some more.
    Since I originally posted, the new OB GYN I saw (3rd one this year) is offering to do a series of 3 pudendal nerve blocks for me. I have no guarantee it will help or work, but she is the only person I have offering anything at this point. If this doesn't help, I guess I will be forced to go out of state to treatment. Sitting that far to travel will be a very big deal, as you guys probably know!
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  6. 10-09-2009, 09:20 AM #6
    Kara29
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    I had to travel 7 hours for my Pudendal Nerve Specialist. Sometimes you have to travel for what you need. I've had many Specialist operate on me over a 10 year period and most of them I had to travel for. My very close friend came over from Alaska to see my Doctor and she stayed for the operation as well. I was lucky to get to meet her when I went for my operation. Maybe you can find someone who will travel with you to see the same doc and you can share the expense of the travels and hotel stay.


    I wish I could produce someone closer to you and maybe in time there will be someone closer to you as the disease becomes more popular and studied.

    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.
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