Unusual and complex case of PN?
Posted: Thu Jan 22, 2015 10:02 pm
Hi. I'm male, 34. I have a history of malnutrition that led to osteomalacia (severely reduced bone density), which altered the shape of my bones (arms and legs, likely pelvis as well). Im not sure if this has led to my pudendal nerve problem or not, but a couple months ago I began to experience severe erectile dysfunction and penile numbness (along with numbness in buttocks). I also have pain in my legs and feet, apparently neurological.
I'm totally devastated by what has happened, and wish that I had an experienced third party to talk to about it. If someone could PM me or even call me on the phone, my life would be suddenly much less hopeless.
I have seen Dr. Conway in New Hampshire, who has recommended surgery. I initially chose to pursue a nerve block (which I think would make the numbness worse, and this is my primary symptom). I have the consult with a pain specialist next week. I have also entered physical therapy, which is an agonizing hour's drive away (assuming no traffic. Lately I have been lying in the back seat while my parents drive me to my appointments, but even lying down, in bed or otherwise, does not provide enough relief). I believe that that the few sessions of physical therapy that I've had (rectal work) may have made things worse, but it may be a situation where I need to do it myself in a tentative, experimental way, and it may be that things can get worse before getting better.
However, a few nights ago, after a day or two of feeling some improvement, I suffered a major worsening after sitting in a certain chair for around an hour. This has pushed me much closer to surgery, for lack of any other clear-cut option. (I have been told that if I have a nerve block that I must wait three months before I can be eligible for surgery.) I know that isn't the best approach to take, but I am in despair in this and in too many other aspects of my life. And yet, at this point, I can't even say with certainty that the surgery would help, based on my history and perhaps unusual cause for an already unusual condition, or even if this is the result of a larger pelvic problem, such as sacroiliac joint dysfunction (based on back pain that I experienced at the onset, which has now subsided).
Thank you for any support that you might provide, or suggestions specific subforums where I should post.
I'm totally devastated by what has happened, and wish that I had an experienced third party to talk to about it. If someone could PM me or even call me on the phone, my life would be suddenly much less hopeless.
I have seen Dr. Conway in New Hampshire, who has recommended surgery. I initially chose to pursue a nerve block (which I think would make the numbness worse, and this is my primary symptom). I have the consult with a pain specialist next week. I have also entered physical therapy, which is an agonizing hour's drive away (assuming no traffic. Lately I have been lying in the back seat while my parents drive me to my appointments, but even lying down, in bed or otherwise, does not provide enough relief). I believe that that the few sessions of physical therapy that I've had (rectal work) may have made things worse, but it may be a situation where I need to do it myself in a tentative, experimental way, and it may be that things can get worse before getting better.
However, a few nights ago, after a day or two of feeling some improvement, I suffered a major worsening after sitting in a certain chair for around an hour. This has pushed me much closer to surgery, for lack of any other clear-cut option. (I have been told that if I have a nerve block that I must wait three months before I can be eligible for surgery.) I know that isn't the best approach to take, but I am in despair in this and in too many other aspects of my life. And yet, at this point, I can't even say with certainty that the surgery would help, based on my history and perhaps unusual cause for an already unusual condition, or even if this is the result of a larger pelvic problem, such as sacroiliac joint dysfunction (based on back pain that I experienced at the onset, which has now subsided).
Thank you for any support that you might provide, or suggestions specific subforums where I should post.