Reading your story above, I feel like I am reading my own. My earlier post (April 24) discusses all my lovely details. I really feel like mine connects back to taking Yasmin birth control in some way. At the suggestion of Adotfritz's post I am going to get my testosterone levels checked because they were very low a couple years ago when tested...and my dr. thought my body was reacting to the pain and producing less...anyway - I want to mention something that I am scared to say is starting to help me, but I have noticed an IMPROVEMENT in my pain where NOTHING has worked for SIX YEARS. I can't even believing I am typing that statement right now but about a month ago, in Dr. Mercola's newsletter, he mentioned something called LDN (low dose naltrexone) for various autoimmune diseases. It piqued my interest because there are theories that vulvodynia and even IC, for that matter, are autoimmune. Plus vitiligo runs in my family (that awful skin disease) and I noticed I am starting to slowly develop white spots (which you can only imagine makes me feel like I have fallen apart on the inside and now outside too). LDN has been used to stop the progression of MS and healed patients with Chron's Disease so it made me think - why not me? Naltrexone has been around for a number of years to help alcoholics and heroin addicts (LOL) recover from their addiction; this dr. in NY (Dr. Bihari) found that in very small doses it was helping people's bodies regulate themselves...it causes your body to produce extra endorphins (which I swear I know I was lacking given the pain, frustration, etc.) but ONLY in the amount your body is lacking. It's fascinating. So I went to my dr. (who already knew about it) and he prescribed 3 mg for me to try. When I tell you the NEXT freaking day, I noticed that my urgency to pee was CALMER and that my stomach (IBS inflammation issues) was calmer too. It freaked me out. I have tried EVERYTHING. I have been taking it for only two weeks. I can't say if it is going to heal me or what is going to happen - all I know is that as someone who has tried everything dr. prescribed and natural (I hate taking medications) I can totally tell a difference. I don't know of anyone else who has tried using LDN for vulvodynia/vestibulitis/IC/pelvic floor dysfunction issues - and I am happy to experiment on myself. The medication is extremely safe in fact it's really your own body's immunity that gets strengthened and is doing the work. The LDN shuts off opiod receptors in your brain for a few hours and tricks your body into making more of its own chemicals. It's a fascinating concept. Normally I wouldn't post anything until I had tried it for a significant period of time but I feel different and better. I feel more like myself. Just a note that LDN is FDA approved at stronger dosages so if your dr. prescribes it, it's considered "off label". Just google and you will find immense resources. You may have to try several doctors if your doctor isn't open-minded or willing to explore the information about it. If anyone has questions for me - please feel free to ask or if you want to speak offline there must be a way through this site. I have felt like something is "not right" for so many years and now I feel like I could be on the path to recovery. Here is Dr. Bihari's webiste: http://www.lowdosenaltrexone.org/ I think it's worth exploring.
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Reading your story above, I feel like I am reading my own. My earlier post (April 24) discusses all my lovely details. I really feel like mine connects back to taking Yasmin birth control in some way. At the suggestion of Adotfritz's post I am going to get my testosterone levels checked because they were very low a couple years ago when tested...and my dr. thought my body was reacting to the pain and producing less...anyway - I want to mention something that I am scared to say is starting to help me, but I have noticed an IMPROVEMENT in my pain where NOTHING has worked for SIX YEARS. I can't even believing I am typing that statement right now but about a month ago, in Dr. Mercola's newsletter, he mentioned something called LDN (low dose naltrexone) for various autoimmune diseases. It piqued my interest because there are theories that vulvodynia and even IC, for that matter, are autoimmune. Plus vitiligo runs in my family (that awful skin disease) and I noticed I am starting to slowly develop white spots (which you can only imagine makes me feel like I have fallen apart on the inside and now outside too). LDN has been used to stop the progression of MS and healed patients with Chron's Disease so it made me think - why not me? Naltrexone has been around for a number of years to help alcoholics and heroin addicts (LOL) recover from their addiction; this dr. in NY (Dr. Bihari) found that in very small doses it was helping people's bodies regulate themselves...it causes your body to produce extra endorphins (which I swear I know I was lacking given the pain, frustration, etc.) but ONLY in the amount your body is lacking. It's fascinating. So I went to my dr. (who already knew about it) and he prescribed 3 mg for me to try. When I tell you the NEXT freaking day, I noticed that my urgency to pee was CALMER and that my stomach (IBS inflammation issues) was calmer too. It freaked me out. I have tried EVERYTHING. I have been taking it for only two weeks. I can't say if it is going to heal me or what is going to happen - all I know is that as someone who has tried everything dr. prescribed and natural (I hate taking medications) I can totally tell a difference. I don't know of anyone else who has tried using LDN for vulvodynia/vestibulitis/IC/pelvic floor dysfunction issues - and I am happy to experiment on myself. The medication is extremely safe in fact it's really your own body's immunity that gets strengthened and is doing the work. The LDN shuts off opiod receptors in your brain for a few hours and tricks your body into making more of its own chemicals. It's a fascinating concept. Normally I wouldn't post anything until I had tried it for a significant period of time but I feel different and better. I feel more like myself. Just a note that LDN is FDA approved at stronger dosages so if your dr. prescribes it, it's considered "off label". Just google and you will find immense resources. You may have to try several doctors if your doctor isn't open-minded or willing to explore the information about it. If anyone has questions for me - please feel free to ask or if you want to speak offline there must be a way through this site. I have felt like something is "not right" for so many years and now I feel like I could be on the path to recovery. Here is Dr. Bihari's webiste: http://www.lowdosenaltrexone.org/ I think it's worth exploring.
June 26, 2009 - 5:44amThis Comment
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