Still going strong!

The new me...Just reporting in to let you know I’m doing well. I’ve gotten used to the pump to the point where I don’t even notice it most of the time. The exception to that is when I bend over to pick up something off the floor or tie my shoe on the left side. I feel the bulk of it then and have to slow down a little and bend around it, so to speak.

I still have minimal pain, but it doesn’t phase me. If I relax and focus on whatever I am doing it usually passes. That has been the best gift of my life. Freedom from constant torture of chronic pelvic pain 24 hours a day. I can DO things!!! I can GO places!!! I am part of the stream of LIFE again!!!

My family and friends watch me with tears in their eyes. You should see the grin on my husband’s face when he arrives home from work and I am cooking dinner. The simplest things are magical now– just getting dressed, going to the grocery store, visiting a friend. I wake up happy and find myself singing. Life is so good without pain!


4 responses to “Still going strong!

  1. Hey again,

    Since reading your story I was looking up info on the pain pump on medtronics website and it all sounded v positive until I got to the ‘risks’ section. This part immidiately jumped out at me: “Additionally, inflammatory masses have been reported at the tip of the catheter which may lead to complications, including paralysis”.
    Now. I dont know what the stats are on these reports, but does that not freak you out?? Would the paralysis be permanant or would it be temporary u til they removed the pump and catheter? Did your doctor give you any info regarding all these risks? It puts me in mind of the current ‘mesh/pelvic slings’ scandal which is going on right now, and the terrible consequences thousands of women have sufferred from things going badly wrong, and from the risks not being properly explained to them. How do you come to a decision to take the risk? I would be terrified.

  2. Yep, I know the risks. Every treatment or surgery for this horrible condition has carried risk, from nerve blocks that flared the pudendal nerve and spread pain down my leg, to PNE surgery that made me worse. I am closely monitored. I see my doctor once a month and the pump is read by a computer, so we know all the numbers… how fast the drip is, how much medication is being used, etc. I get a print-out each time. Every two months I get refills of the medication, and there is a warning built in to the pump if the medication gets lower than a certain point.

    You are doing the right thing to research the pump – or any device, treatment or surgery you may be considering. Essentially, each person has to judge what is right for them. For me, I was at the point where life was unbearable. So anything better than that was a plus! And I got SO MUCH MORE than I hoped for… it’s worth the risk, because without the pump, I have nothing. I think you have to be at that serious of a level to take a step like having a pump implanted. 🙂

  3. I understand, I truly truly do. I just find all these things so scary. I am not at the place you were in, in terms of the awful physical pain you were in, but I have been there emotionally. Many days I still am. I’m not trying to bring you down or rain on your parade. Please don’t think that. Was just alarmed ro read that on the Medtronics site. I’m in the last chance saloon right now too I am unable to live any kind of life at all, in my case because the IC has robbed me of my ability to take essential anti-anxiety/anti-depressant meds and anti-acid meds. I live in constant mental and emotional pain, as well as having to deal with all my pelvic floor and bladder problems. Yet still I’m not sure I would be strong enough to take the leap of faith you have done. I pray you continue to fly high!! Sorry if I seemed negative.

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