Guest guest Posted January 16, 2007 Report Share Posted January 16, 2007 nne, I agree that one should do a lot of research before deciding which course to take. When I had my pudenal nerve blocked by my PM dr a couple times she got it right on. When she pressed on the area with her fingers I then told her where to go and she got it. And yes, I did a ton of research before I started seeing her to see if she dealt with vulvodynia. How are you holding up hun? Kristy ________________________________________________________________________________\ ____ Be a PS3 game guru. Get your game face on with the latest PS3 news and previews at Yahoo! Games. http://videogames.yahoo.com/platform?platform=120121 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2007 Report Share Posted January 16, 2007 nne, I agree that one should do a lot of research before deciding which course to take. When I had my pudenal nerve blocked by my PM dr a couple times she got it right on. When she pressed on the area with her fingers I then told her where to go and she got it. And yes, I did a ton of research before I started seeing her to see if she dealt with vulvodynia. How are you holding up hun? Kristy ________________________________________________________________________________\ ____ Be a PS3 game guru. Get your game face on with the latest PS3 news and previews at Yahoo! Games. http://videogames.yahoo.com/platform?platform=120121 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2007 Report Share Posted January 16, 2007 nne, I agree that one should do a lot of research before deciding which course to take. When I had my pudenal nerve blocked by my PM dr a couple times she got it right on. When she pressed on the area with her fingers I then told her where to go and she got it. And yes, I did a ton of research before I started seeing her to see if she dealt with vulvodynia. How are you holding up hun? Kristy ________________________________________________________________________________\ ____ Be a PS3 game guru. Get your game face on with the latest PS3 news and previews at Yahoo! Games. http://videogames.yahoo.com/platform?platform=120121 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2007 Report Share Posted January 16, 2007 Kristy, I think I will have a good chance of them finding the nerve to do the block, because I can put my exact finger on it, both interior and exterior. It has been this way since I had the first small twinge last May, and I didn't know what it was. The only difference now is that the wide surrounding nerve area is also inflamed - the whole perineum area and the butt checks. I think the PNE came first and gave me the vulvodynia and the LS. My husband figured out that I have been probably spending 50-60 hours a week researching this disease and where to get help. (With my laptop balanced on my stomach LOL.)I have done this in severe pain and I have had little to no help from the medical community. For example of my own resourcefulness, around 2am last evening (this morning) I found a website forum that was dedicated strictly to the experiences of nerve blocks that were done by the physician I am going to see in February. This was a goldmine of information for me and I fired off a lot of questions. I am very confident that I am going to one of the very best PN doctors in the US. I also have the best vulvodynia doctor and I have lined up one of the best pelvic PT's. NONE of this was provided to me by any physician. I am self- diagnosed and told the doctors what I had. My primary care doctor is not suportive as she does not know what the condition is and doesn't want to. My original GYN wanted to learn and I purchased him the popular vulvodynia books, so maybe he can help others in his practice. He (really nice man)also knew he couldn't help me. I am not very confident of the results of the nerve blocks, and as hard as I have been trying to mentally document the results, the negatives seem to far out-way the positives. But also, I know positives are not reported that often, as when people are cured, they rarely visit the sites(groups)that they were once a part of. The only ones who do come back are the women who have made friends and also want to help others by recanting their positive experiences. As far as the positive outcome of the blocks - it seems to be a combination of the doctor who is doing the procedure and the patient. And when you think about it, that is the way it is with any medical procedure. One thing I can say is that it is rare for one block to cure the pain. One person was overjoyed that she got five hours of " no pain " , before it returned again. That is so sad. But I know how I would feel if I had five hours, I would be running around cleaning the house, going out to eat and taking a ride to the beach even in the winter. Most people are seeing " some " relief after 3-4 blocks. Don't quote me on this as I can't remember where I think I read it - but I think someone mentioned that you can only have four blocks in a year, but I don't know if this is true. Also I think excellent pelvic physical therapy plays a big part in relieving the pain and rebuilding the pelvic muscles. And the word here is " excellent " which is hard to find for a lot of people - and then the cost - if you have to pay for it yourself it is expensive. At least 12 sessions to start, and most of the people I spoke to said a year of PT with home daily sessions and tune-ups once a year back at the PT's. I can see my own body (muscles) are starting to atrophy, so I know I will have to do this also. Remember - we are talking now about PN, NOT vulvodynia, but this also benefits greatly from excellent PT. So for complete (very rare from my limited research)to partial relief of pain, it is at least 1-2 years, and possibly lifelong maintenance. Please remember this information is from MY research, nothing scientific. I just wanted to find out what my odds were for relief and I realize now, as I have a severe case, that it quite possibly will take years. AND, please (other readers)don't say to me - that is not my experience - and I am glad that it is not - these are the comments that I have personally obtained from women over the last several months. Another reason I am being so aggressive with the treatment of this condition is that I am not a young (chronologically) woman. I am postmenopausal and the body just doesn't snap back as fast as a younger persons does. I still think of myself (and once acted like) a very youthful, vibrant and active woman. But that is no longer the case. You asked how I was holding up - very poorly to say the least. I want my old life back and the pain is 8-10 even with narcotics and Neurontin. There is nothing that can be done to relieve this pain until they find the source. And what worries me the most, is that every month that goes by, it gets a little worse. I just can't imagine how that is happening - but it is. Sorry, I didn't mean to write this much, the words just started typing. Also, I wanted to thank everyone again who have shown me so much empathy and encouragement through their private emails. nne > > nne, > > I agree that one should do a lot of research before deciding > which course to take. > > When I had my pudenal nerve blocked by my PM dr a couple times > she got it right on. When she pressed on the area with her > fingers I then told her where to go and she got it. > > And yes, I did a ton of research before I started seeing her to > see if she dealt with vulvodynia. How are you holding up hun? > > Kristy > > > > > > > > _____________________________________________________________________ _______________ > Be a PS3 game guru. > Get your game face on with the latest PS3 news and previews at Yahoo! Games. > http://videogames.yahoo.com/platform?platform=120121 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2007 Report Share Posted January 16, 2007 Kristy, I think I will have a good chance of them finding the nerve to do the block, because I can put my exact finger on it, both interior and exterior. It has been this way since I had the first small twinge last May, and I didn't know what it was. The only difference now is that the wide surrounding nerve area is also inflamed - the whole perineum area and the butt checks. I think the PNE came first and gave me the vulvodynia and the LS. My husband figured out that I have been probably spending 50-60 hours a week researching this disease and where to get help. (With my laptop balanced on my stomach LOL.)I have done this in severe pain and I have had little to no help from the medical community. For example of my own resourcefulness, around 2am last evening (this morning) I found a website forum that was dedicated strictly to the experiences of nerve blocks that were done by the physician I am going to see in February. This was a goldmine of information for me and I fired off a lot of questions. I am very confident that I am going to one of the very best PN doctors in the US. I also have the best vulvodynia doctor and I have lined up one of the best pelvic PT's. NONE of this was provided to me by any physician. I am self- diagnosed and told the doctors what I had. My primary care doctor is not suportive as she does not know what the condition is and doesn't want to. My original GYN wanted to learn and I purchased him the popular vulvodynia books, so maybe he can help others in his practice. He (really nice man)also knew he couldn't help me. I am not very confident of the results of the nerve blocks, and as hard as I have been trying to mentally document the results, the negatives seem to far out-way the positives. But also, I know positives are not reported that often, as when people are cured, they rarely visit the sites(groups)that they were once a part of. The only ones who do come back are the women who have made friends and also want to help others by recanting their positive experiences. As far as the positive outcome of the blocks - it seems to be a combination of the doctor who is doing the procedure and the patient. And when you think about it, that is the way it is with any medical procedure. One thing I can say is that it is rare for one block to cure the pain. One person was overjoyed that she got five hours of " no pain " , before it returned again. That is so sad. But I know how I would feel if I had five hours, I would be running around cleaning the house, going out to eat and taking a ride to the beach even in the winter. Most people are seeing " some " relief after 3-4 blocks. Don't quote me on this as I can't remember where I think I read it - but I think someone mentioned that you can only have four blocks in a year, but I don't know if this is true. Also I think excellent pelvic physical therapy plays a big part in relieving the pain and rebuilding the pelvic muscles. And the word here is " excellent " which is hard to find for a lot of people - and then the cost - if you have to pay for it yourself it is expensive. At least 12 sessions to start, and most of the people I spoke to said a year of PT with home daily sessions and tune-ups once a year back at the PT's. I can see my own body (muscles) are starting to atrophy, so I know I will have to do this also. Remember - we are talking now about PN, NOT vulvodynia, but this also benefits greatly from excellent PT. So for complete (very rare from my limited research)to partial relief of pain, it is at least 1-2 years, and possibly lifelong maintenance. Please remember this information is from MY research, nothing scientific. I just wanted to find out what my odds were for relief and I realize now, as I have a severe case, that it quite possibly will take years. AND, please (other readers)don't say to me - that is not my experience - and I am glad that it is not - these are the comments that I have personally obtained from women over the last several months. Another reason I am being so aggressive with the treatment of this condition is that I am not a young (chronologically) woman. I am postmenopausal and the body just doesn't snap back as fast as a younger persons does. I still think of myself (and once acted like) a very youthful, vibrant and active woman. But that is no longer the case. You asked how I was holding up - very poorly to say the least. I want my old life back and the pain is 8-10 even with narcotics and Neurontin. There is nothing that can be done to relieve this pain until they find the source. And what worries me the most, is that every month that goes by, it gets a little worse. I just can't imagine how that is happening - but it is. Sorry, I didn't mean to write this much, the words just started typing. Also, I wanted to thank everyone again who have shown me so much empathy and encouragement through their private emails. nne > > nne, > > I agree that one should do a lot of research before deciding > which course to take. > > When I had my pudenal nerve blocked by my PM dr a couple times > she got it right on. When she pressed on the area with her > fingers I then told her where to go and she got it. > > And yes, I did a ton of research before I started seeing her to > see if she dealt with vulvodynia. How are you holding up hun? > > Kristy > > > > > > > > _____________________________________________________________________ _______________ > Be a PS3 game guru. > Get your game face on with the latest PS3 news and previews at Yahoo! Games. > http://videogames.yahoo.com/platform?platform=120121 > Quote Link to comment Share on other sites More sharing options...
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