Far and away the best online resource. Be forwarned though, huge number of post and lots of whinning, but the guy that wrote that great UK website on the topic (the one with the survey) moderates and responds a great deal. Lots of people posting test results and comiserating about the frustrations of endos.
And as far as getting docs to listen... no idea. Z reminded me that the progression you're currently in the middle of is almost exactly the progression I went though. It was incredibly frustrating, but since I'd had a bizzare stim test in the hosptial the endo eventually had to give me one in his office. It was a horrible experience, but it did happen. And 3 days later he calls me cell and says "well... um... I got your test results, and.. um..."
The trick now is finding the right balance/timing/dosages for all the meds. And now there's the theroy that with my system closer to stable I'm now loosing Magnesium, which would explain the really horrible 10 days or so I'm having a month with the wierd cramping...
The best thing the list has taught me is that life can be normal but that it's an adjustable system that needs to be well monitored. Overall though I'm feeling so much better I can't believe how horrible I felt for how long. :) Remember, there is hope. :)
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Far and away the best online resource. Be forwarned though, huge number of post and lots of whinning, but the guy that wrote that great UK website on the topic (the one with the survey) moderates and responds a great deal. Lots of people posting test results and comiserating about the frustrations of endos.
And as far as getting docs to listen... no idea. Z reminded me that the progression you're currently in the middle of is almost exactly the progression I went though. It was incredibly frustrating, but since I'd had a bizzare stim test in the hosptial the endo eventually had to give me one in his office. It was a horrible experience, but it did happen. And 3 days later he calls me cell and says "well... um... I got your test results, and.. um..."
The trick now is finding the right balance/timing/dosages for all the meds. And now there's the theroy that with my system closer to stable I'm now loosing Magnesium, which would explain the really horrible 10 days or so I'm having a month with the wierd cramping...
The best thing the list has taught me is that life can be normal but that it's an adjustable system that needs to be well monitored. Overall though I'm feeling so much better I can't believe how horrible I felt for how long. :) Remember, there is hope. :)