ICsmiles
02-24-2009, 10:20 AM
Hello - I am so discouraged right now, so I am coming here to the ICN where I have felt safe whenever I needed help through this frightening journey.
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A brief history: My pain started 13 years ago on the left side of my perineum - like an itchy, burny feeling - went to doctor after doctor while it got worse and worse - finally I was diagnosed with IC with the potassium sensitivity test and put on Elmiron and Atarax. My pain by then felt like knives and shards of glass stuck in my left side, but I was told it was my urethra and referred pain from IC. After several more years the pain did spread to my bladder, and it was aching and burning in addition to the knives in my perineum. Instills did nothing for me other than cause more pain. I had hydrodistentions in 2000 and 2005 and was told my bladder looks good and capacity is good, although I do have the classic IC glomerulations. By 2007, I could no longer work and went to a new dr. who said instead of IC it might really be pudendal neuralgia that was causing urinary problems and bladder pain along with the windup of pain throughout my pelvis. He did 2 nerve blocks with a giant needle through my buttocks (OMG!) which did not help. More disappointment. Then I had many sessions of physical therapy and my husband was taught how to do it as well ... I continued physical therapy for the past year, along with relaxation (meditation) sessions. However, I have continued to get worse, and now am in despair that I will ever get better. I cannot think of one treatment that has helped and I have become cynical and depressed.
SO... now I am wondering about the surgical option. It scares me! I was warned TO NEVER HAVE PNE SURGERY -- that it is basically butchery; that it destabilizes the pelvis and makes people worse off than before the surgery.
Okay .... but how could i be worse than I am? I have no life - I cannot sit, so I lay on the couch or bed all day with my legs up on a giant pillow to keep the pelvic floor relaxed as possible. I don't go anywhere, I cannot participate in anything with friends or family - it is like I have fallen into a black hole. All I have are books and my laptop, which I am so grateful for as it provides a gateway to the ICN and other forums, which has been a lifesaver.
Learning about PNE is overwhelming though. The cost alone is staggering. I just do not know which way to turn next. I am in California ... and I have been reading about a surgeon in Santa Monica who also does an MRN scan which shows the nerves.... there are very few doctors who treat this, with the main facility overseas in France, and then a handful of doctors in the states, in New Hampshire, Texas, and the one I mentioned in California... but it just feels daunting. I have already traveled and spent thousands of dollars to try to get better and every time have only gotten worse.
If anyone has some hope or can share their own experience, I would be grateful. :pray:
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A brief history: My pain started 13 years ago on the left side of my perineum - like an itchy, burny feeling - went to doctor after doctor while it got worse and worse - finally I was diagnosed with IC with the potassium sensitivity test and put on Elmiron and Atarax. My pain by then felt like knives and shards of glass stuck in my left side, but I was told it was my urethra and referred pain from IC. After several more years the pain did spread to my bladder, and it was aching and burning in addition to the knives in my perineum. Instills did nothing for me other than cause more pain. I had hydrodistentions in 2000 and 2005 and was told my bladder looks good and capacity is good, although I do have the classic IC glomerulations. By 2007, I could no longer work and went to a new dr. who said instead of IC it might really be pudendal neuralgia that was causing urinary problems and bladder pain along with the windup of pain throughout my pelvis. He did 2 nerve blocks with a giant needle through my buttocks (OMG!) which did not help. More disappointment. Then I had many sessions of physical therapy and my husband was taught how to do it as well ... I continued physical therapy for the past year, along with relaxation (meditation) sessions. However, I have continued to get worse, and now am in despair that I will ever get better. I cannot think of one treatment that has helped and I have become cynical and depressed.
SO... now I am wondering about the surgical option. It scares me! I was warned TO NEVER HAVE PNE SURGERY -- that it is basically butchery; that it destabilizes the pelvis and makes people worse off than before the surgery.
Okay .... but how could i be worse than I am? I have no life - I cannot sit, so I lay on the couch or bed all day with my legs up on a giant pillow to keep the pelvic floor relaxed as possible. I don't go anywhere, I cannot participate in anything with friends or family - it is like I have fallen into a black hole. All I have are books and my laptop, which I am so grateful for as it provides a gateway to the ICN and other forums, which has been a lifesaver.
Learning about PNE is overwhelming though. The cost alone is staggering. I just do not know which way to turn next. I am in California ... and I have been reading about a surgeon in Santa Monica who also does an MRN scan which shows the nerves.... there are very few doctors who treat this, with the main facility overseas in France, and then a handful of doctors in the states, in New Hampshire, Texas, and the one I mentioned in California... but it just feels daunting. I have already traveled and spent thousands of dollars to try to get better and every time have only gotten worse.
If anyone has some hope or can share their own experience, I would be grateful. :pray: