Guest guest Posted July 5, 2006 Report Share Posted July 5, 2006 This is a great resource for Pudendal Neuralgia. http://www.spuninfo.org/index.htm Kathy Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 nne, That's great to hear that you're going to see this doctor. Thanks for posting that site. It sounds like you might live somewhere around me- I am in CT about an hour and a half from boston. You see Dr. , right? Does she seem pretty good about exploring many different things or is she one of the ones who goes very slow and needs convincing? Do you like her? I may try to get in to see her. I may use that site as some of my back-up if necessary to convince my doctor to look at different things. The thing that I have learned the most from all this is that we have to do lots of research ourselves. I think that we will ALL get better because we are all searching for every answer. I am a strong believer that there is a cause to our problems and by finding the root cause of the problem we will eliminate at least some or hopefully all of our symptoms/pain. There may be associated problems but we don't have pain for no reason. When I first got this terrible clitoral pain, most of the things I read didn't give much hope. They talked about taking medicines that might help with the symptoms but since then I have learned that there are lots of things that could be causing pain that those articles don't mention, probably because there hasn't been too much research done on it. I am learning that it might take time and lots of different doctors but eventually, a little ways down the road, we'll make some progress. Sorry for the rant and rave, I just really think that because we are all searching and pushing that we'll be ok in the end. It just stinks right now.solittletimeleft wrote: http://www.spuninfo.org/index.htm Pudendal NeuralgiaMaybe this site has been mentioned before, but if not take the time to read it thoroughly, including the patient stories. There is mention in the treatment part about pelvic floor dysfunction, PT treatment, etc.I am excited today because I have just been pre-interviewed by phone by one of the PN doctors (listed on the site) who said I have eight out of ten symptoms for this condition. I am now waiting for treatment scheduling, which should happen within six weeks. As I mentioned in previous posts I am also going to have pelvic physical therapy with Raquel K. Perlis in MA starting in April.Long story short - I first developed symptoms in July with muscle spasms in my back. The vulvodynia started within a couple of weeks. Every month since then my condition has gotten worse. I am completely disabled now, on the sofa, getting up only for the bathroom, or go to the doctor. Since July, my doctor visits are 1-2 a week. I am on narcotics, which only reduce the pain down to an 8/10, but it is enough to watch TV, read, etc. I have to lie down even if I am in the car. I can not stand for more than 5-10 minutes I have the luxury (if you can call it that) to be able to devote all my time to helping myself. I spend all waking hours (with my laptop balanced on my hip) talking with women and researching on the web on what's wrong with me. It is because of the wonderful women on these groups that I have found the help that I am now getting. This help and advice has taken a few months versus years, or if at all, from these women. I can't thank them enough for what they have done for me. So hopefully I will be on the road to recovery soon. I know this won't be a quick fix or even a full recovery, but anything is better than the life I am now living.nne __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 nne, That's great to hear that you're going to see this doctor. Thanks for posting that site. It sounds like you might live somewhere around me- I am in CT about an hour and a half from boston. You see Dr. , right? Does she seem pretty good about exploring many different things or is she one of the ones who goes very slow and needs convincing? Do you like her? I may try to get in to see her. I may use that site as some of my back-up if necessary to convince my doctor to look at different things. The thing that I have learned the most from all this is that we have to do lots of research ourselves. I think that we will ALL get better because we are all searching for every answer. I am a strong believer that there is a cause to our problems and by finding the root cause of the problem we will eliminate at least some or hopefully all of our symptoms/pain. There may be associated problems but we don't have pain for no reason. When I first got this terrible clitoral pain, most of the things I read didn't give much hope. They talked about taking medicines that might help with the symptoms but since then I have learned that there are lots of things that could be causing pain that those articles don't mention, probably because there hasn't been too much research done on it. I am learning that it might take time and lots of different doctors but eventually, a little ways down the road, we'll make some progress. Sorry for the rant and rave, I just really think that because we are all searching and pushing that we'll be ok in the end. It just stinks right now.solittletimeleft wrote: http://www.spuninfo.org/index.htm Pudendal NeuralgiaMaybe this site has been mentioned before, but if not take the time to read it thoroughly, including the patient stories. There is mention in the treatment part about pelvic floor dysfunction, PT treatment, etc.I am excited today because I have just been pre-interviewed by phone by one of the PN doctors (listed on the site) who said I have eight out of ten symptoms for this condition. I am now waiting for treatment scheduling, which should happen within six weeks. As I mentioned in previous posts I am also going to have pelvic physical therapy with Raquel K. Perlis in MA starting in April.Long story short - I first developed symptoms in July with muscle spasms in my back. The vulvodynia started within a couple of weeks. Every month since then my condition has gotten worse. I am completely disabled now, on the sofa, getting up only for the bathroom, or go to the doctor. Since July, my doctor visits are 1-2 a week. I am on narcotics, which only reduce the pain down to an 8/10, but it is enough to watch TV, read, etc. I have to lie down even if I am in the car. I can not stand for more than 5-10 minutes I have the luxury (if you can call it that) to be able to devote all my time to helping myself. I spend all waking hours (with my laptop balanced on my hip) talking with women and researching on the web on what's wrong with me. It is because of the wonderful women on these groups that I have found the help that I am now getting. This help and advice has taken a few months versus years, or if at all, from these women. I can't thank them enough for what they have done for me. So hopefully I will be on the road to recovery soon. I know this won't be a quick fix or even a full recovery, but anything is better than the life I am now living.nne __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 nne, That's great to hear that you're going to see this doctor. Thanks for posting that site. It sounds like you might live somewhere around me- I am in CT about an hour and a half from boston. You see Dr. , right? Does she seem pretty good about exploring many different things or is she one of the ones who goes very slow and needs convincing? Do you like her? I may try to get in to see her. I may use that site as some of my back-up if necessary to convince my doctor to look at different things. The thing that I have learned the most from all this is that we have to do lots of research ourselves. I think that we will ALL get better because we are all searching for every answer. I am a strong believer that there is a cause to our problems and by finding the root cause of the problem we will eliminate at least some or hopefully all of our symptoms/pain. There may be associated problems but we don't have pain for no reason. When I first got this terrible clitoral pain, most of the things I read didn't give much hope. They talked about taking medicines that might help with the symptoms but since then I have learned that there are lots of things that could be causing pain that those articles don't mention, probably because there hasn't been too much research done on it. I am learning that it might take time and lots of different doctors but eventually, a little ways down the road, we'll make some progress. Sorry for the rant and rave, I just really think that because we are all searching and pushing that we'll be ok in the end. It just stinks right now.solittletimeleft wrote: http://www.spuninfo.org/index.htm Pudendal NeuralgiaMaybe this site has been mentioned before, but if not take the time to read it thoroughly, including the patient stories. There is mention in the treatment part about pelvic floor dysfunction, PT treatment, etc.I am excited today because I have just been pre-interviewed by phone by one of the PN doctors (listed on the site) who said I have eight out of ten symptoms for this condition. I am now waiting for treatment scheduling, which should happen within six weeks. As I mentioned in previous posts I am also going to have pelvic physical therapy with Raquel K. Perlis in MA starting in April.Long story short - I first developed symptoms in July with muscle spasms in my back. The vulvodynia started within a couple of weeks. Every month since then my condition has gotten worse. I am completely disabled now, on the sofa, getting up only for the bathroom, or go to the doctor. Since July, my doctor visits are 1-2 a week. I am on narcotics, which only reduce the pain down to an 8/10, but it is enough to watch TV, read, etc. I have to lie down even if I am in the car. I can not stand for more than 5-10 minutes I have the luxury (if you can call it that) to be able to devote all my time to helping myself. I spend all waking hours (with my laptop balanced on my hip) talking with women and researching on the web on what's wrong with me. It is because of the wonderful women on these groups that I have found the help that I am now getting. This help and advice has taken a few months versus years, or if at all, from these women. I can't thank them enough for what they have done for me. So hopefully I will be on the road to recovery soon. I know this won't be a quick fix or even a full recovery, but anything is better than the life I am now living.nne __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 , My vulvodynia was caused by a surgical procedure to the vulvar area 10 years ago. Kristy __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 , My vulvodynia was caused by a surgical procedure to the vulvar area 10 years ago. Kristy __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 , My vulvodynia was caused by a surgical procedure to the vulvar area 10 years ago. Kristy __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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