Looking for advice
Posted: Thu Nov 11, 2010 11:00 pm
Well, I'm not sure where to start...I used to post on the old pudendal.info forum under the same username but I haven't posted in over a year but I read periodically to keep up with what was going on in the community. My problem is unusual in that my pain starts primarily in the sacrum and I do not have pain all the time despite having this problem in one variation or another for the past 5 years (I'm 27 so for the majority of the years of my life that are supposed to be "carefree"). I can go for periods of time with absolutely no pain and I feel just like a "normal" person, living a normal life and not giving much of a thought to pain. The last pain-free episode I had was from September 2009 to March 2010...I had gone back to school and was sitting *a lot* but this didn't present a problem for me at all. I had a mini-flare in March that lasted a week and I then returned to "normal" until August of this year. Ever since then I've had a couple of mini-flares but nothing that phased me or held me back from doing what I wanted to do. I am now in another flare after being pain-free and despite the fact that this is not the worst pain I have been in (not even close), I find this very distressing to the point where I have been crying off and on all day.
Sometimes my flares consist only of a bit of sacral pain/pressure with no involvement of the rest of the pelvic area where as at other points in time, the pain spreads from the sacrum and I feel soreness/pressure vaginally, mostly on the left-side. There is no burning and generally no sharp pains to speak of. This can sometimes involve a pulled muscle feeling the back of my thighs (or just one thigh, depending!). During my "flares", I feel better with a full bowel and it almost seems like I feel the sacral pain more once my bowel has been emptied. The sacral pain can lead to mild bladder discomfort (feeling like my bladder hasn't totally emptied but I combat this by drinking a lot of water and this seems to help). I am still able to have sex with my husband during flares as it isn't unbearable but obviously, not ideal either. I sometimes also have a clunking feeling in my sacrum if I bear down. Apparently, it was seen in an x-ray that my SI joints are "narrowed" and something about my tailbone being turned at a slightly odd angle (no history of falls, childbirth etc). I have "tender" points all over my hips, thighs and lower back that are present even when I am not having a "flare" or sacral/pelvic symptoms. However, you actually have to press or touch the tender points to illicit any pain and my husband can identify them when he gives me a massage. I can't say that sitting necessarily makes a flare worse but it doesn't feel "normal" as it does when I am not in a flare.
Anyway, I just don't quite understand what my particular problem is and I don't know what to do about it. It is really disheartening to go for long periods with no pain and thinking that maybe *this* time the pain is gone for good...just to have it return again and I can't always identify a trigger. My husband and I are planning on starting a family early next year and I just don't know what pregnancy is going to be like for me(I have zero plans to have a vaginal birth...it will be elective c-section all the way). I currently take 10 mgs of Elival regardless of whether I am symptom-free (I also have some fibromyalgia-type symptoms that this medication controls) and I do not take any pain medications at all. I don't use a cushion for sitting and typically don't restrict my activities with the exception of certain types of exercise (I will walk on a treadmill, walk outside or use an elliptical gently only).
Can anyone give me any insight as to this condition? What should I do?? It is really hard to feel motivated to pursue something when the pain isn't always there. I know I am lucky compared to some people but I worry that one day I will have a flare and it won't go away or that I will become totally disabled during pregnancy and so on. Anyway, enough with the whining!
Thanks.
Stephanie
Sometimes my flares consist only of a bit of sacral pain/pressure with no involvement of the rest of the pelvic area where as at other points in time, the pain spreads from the sacrum and I feel soreness/pressure vaginally, mostly on the left-side. There is no burning and generally no sharp pains to speak of. This can sometimes involve a pulled muscle feeling the back of my thighs (or just one thigh, depending!). During my "flares", I feel better with a full bowel and it almost seems like I feel the sacral pain more once my bowel has been emptied. The sacral pain can lead to mild bladder discomfort (feeling like my bladder hasn't totally emptied but I combat this by drinking a lot of water and this seems to help). I am still able to have sex with my husband during flares as it isn't unbearable but obviously, not ideal either. I sometimes also have a clunking feeling in my sacrum if I bear down. Apparently, it was seen in an x-ray that my SI joints are "narrowed" and something about my tailbone being turned at a slightly odd angle (no history of falls, childbirth etc). I have "tender" points all over my hips, thighs and lower back that are present even when I am not having a "flare" or sacral/pelvic symptoms. However, you actually have to press or touch the tender points to illicit any pain and my husband can identify them when he gives me a massage. I can't say that sitting necessarily makes a flare worse but it doesn't feel "normal" as it does when I am not in a flare.
Anyway, I just don't quite understand what my particular problem is and I don't know what to do about it. It is really disheartening to go for long periods with no pain and thinking that maybe *this* time the pain is gone for good...just to have it return again and I can't always identify a trigger. My husband and I are planning on starting a family early next year and I just don't know what pregnancy is going to be like for me(I have zero plans to have a vaginal birth...it will be elective c-section all the way). I currently take 10 mgs of Elival regardless of whether I am symptom-free (I also have some fibromyalgia-type symptoms that this medication controls) and I do not take any pain medications at all. I don't use a cushion for sitting and typically don't restrict my activities with the exception of certain types of exercise (I will walk on a treadmill, walk outside or use an elliptical gently only).
Can anyone give me any insight as to this condition? What should I do?? It is really hard to feel motivated to pursue something when the pain isn't always there. I know I am lucky compared to some people but I worry that one day I will have a flare and it won't go away or that I will become totally disabled during pregnancy and so on. Anyway, enough with the whining!
Thanks.
Stephanie