Guest guest Posted December 20, 2007 Report Share Posted December 20, 2007 Hi Irene, You mentioned fibromyalgia, osteoporosis, IBS -- have you ever been tested for Celiac disease (gluten-intolerance) and Vitamin D deficency? If not, I recommend highly as some doctors believe vulvodynia can be caused by not enough Vitamin D which can happen with a malabsoption disease like Celiac. Vitamin D deficency can play a part in all of what you have above. I hope you start feeling better soon. Emma > > Hi everyone, I haven't posted for awhile. I've been struggling with > fibromyalgia, osteoporosis, IBS and gastro issues, and fibromyalgia. > Meanwhile my pelvic pain hasn't been getting any better. My backside > is numb much of the time and my perineum feels swollen. Sometimes the > area goes into spasm. A neurologist couldn't find anything wrong, nor > can my gyn or gastro doc. The gyn says my PF seems fine. An > osteopath said she thinks it's from my sacral area. I'm supposed to > see an internist at the beginning of February to talk about having an > MRI (?). > At one point I did have a list of Seattle area PTs, but can't seem > to locate it. > Also curious if osteopathic manipulation has helped anyone. I see > there have been some positive postings on cranio-sacral work. I had a > few treatments by a well-respected osteopath, but it seems to have just > made the spasms worse. > Thanks for any help. Irene > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2007 Report Share Posted December 20, 2007 Hi Emma, I have gotten Celiac disease tests (all conclusively negative) and am on Vitamin D therapy. Since I've been on the Vitamin D, I have noticed that my skin, in general, and vulvar tissue, more specifically, are looking healthier. Vitamin D is also important to help the body absorb Calcium, which I need for the osteoporosis. I also use Vagifem once a week and external Estrace once a week, which helps to control the vulvar burning and thinning. Sadly, I haven't found anything to help the internal vaginal burning and dryness during intercourse, even though the gyn says the tissue looks healthy thanks to the Vagifem. My biggest issue right now is pelvic spasms that will radiate down my leg and also up my back. Sometimes it feels like my backside is numb. Sometimes it feels like a golf ball is between my legs. The perineal area can feel swollen, although the gyn says it isn't. So far the doctors I've seen have not been able to isolate exactly where the trigger point(s) are. My lower colon also tends to kink and gives me lots of gas. Because of lifelong IBS constipation, choosing foods that are healthy and that don't upset my colon is a challenge. I'm going to see the osteopath who helped me with a neck injury some years ago. She does cranial-sacral and other maniputlative work. She studied at the Uplander Institute. She is also a licensed Doctor of Osteopathy. I'm going to bring along the material from Headache in the Pelvis and also from Kathe Wallace's (PT) web site and see what she thinks. She only does external work. I think its worth a try to see if she can locate trigger points that way before I go the internal route with someone like Kathe. Fortunately, though I am in discomfort much of the time, I am not in pain. Would seem that this is a muscular issue and not a nerve issue. It's pretty annoying, though, and I want to get it taken care of, since it does seem to be getting worse over time. Irene > > Hi Irene, > > You mentioned fibromyalgia, osteoporosis, IBS -- have you ever been > tested for Celiac disease (gluten-intolerance) and Vitamin D > deficency? If not, I recommend highly as some doctors believe > vulvodynia can be caused by not enough Vitamin D which can happen > with a malabsoption disease like Celiac. Vitamin D deficency can > play a part in all of what you have above. > > I hope you start feeling better soon. > > Emma > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2007 Report Share Posted December 21, 2007 Irene, You could test negative for celiac and still have gluten intolerance - there are varying levels. I am gluten intolerant but do not have celiac. My LP is currently under control without steroids (just hormones) except for a tiny sore spot around the clitoris, because of PT, hormone treatment, and giving up gluten and less dairy and sugar as well. You should try the home test for gluten from www.enterolab.com - reputable lab, very accurate tests. Melinda Quote Link to comment Share on other sites More sharing options...
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