Post by rubyrose on Oct 19, 2009 19:33:04 GMT -5
Hi All,
Apologies in advance for a very lllooonnnggg post.
I'm 37 and diagnosed Jan 2008 after about 13 years of increasing pain etc. I'm very glad to find an online community of other women with endo empowering themselves and each other through the sharing of information and support.
I have a specific question related to progesterone therapies. I've been tried on four different progestin-containing meds: Prometrium ("natural" progesterone?), Megace, the Mirena IUD and the Nuva Ring and had a very bizarre and disabling reaction to each one of them. I'd like to know if anyone else has ever experienced severe fatigue or muscle weakness related to progesterone therapy. I've read and heard that many women have been helped by it, and wonder if wild yam extract could help me, but am afraid to go near it to be frank. I also read that when a woman takes progesterone, her own body ceases to manufacture it, kind of like melatonin, and so despite taking it, one can actually somehow be deficient (?). It's all very confusing to me.
Anyhow, after each medication, I experienced varying degrees of weakness and fatigue which at it's mildest was a feeling of being very dragged out and heavy/tired. Kind of like gravity being stronger and everything taking more effort and energy to do as a result. I'd have an increasingly limited amount of physical energy and run out of steam after a few steps. Sometimes be able to get to the kitchen to make something to eat, but not get back, or to the bathroom, etc. Pretty big drag needing help from my partner and friends to get to and from the loo. Very embarassing! Predicting when or where I'd run out of steam was difficult but if I overdid it, I was in real trouble, in a full-on "flop." At it's worst, I was slurring my speech, completely white and limp like a rag doll with no strength to even lift my head, muscles lax, a severe drop in blood pressure, trouble breathing and fighting to stay conscious, trying not to pee my pants as all my muscles gave out. With these more severe episodes, I'd get terrible headaches for 2-3 days and be very thirsty. I'd recover to any degree only through rest. The other thing that started happening was a very erratic heartbeat, from very slow and weak to severe palpitations, and a temperature drop.
By far the worst reactions were to the prometrium and the nuva ring, after which I was hospitalized for 5 weeks. They ran tons of tests but nothing showed up out of whack enough to be considered abnormal, aside from an off cortisol and an off thyroid at one point, both of which were "normal" on other tests. They ruled out MS and brain tumours and strokes, and ended up scratching their heads and theorizing that I was making it up or that it was somehow a mental health thing, despite assessing me and finding no MH diagnoses or presentations aside from the stress and distress of the situation. Even after stopping the meds, things would get a bit better but I'd have to be very careful how much I'd do, but then in the week and a half before my period, I'd get a lot worse. Then, things would improve halfway through my period and I'd be able to be more independant, feel more like myself. I realised that this was loosely following the progesterone level pattern, so figured the meds had made me over-sensitive to my own progesterone.
It's take four and a half months for me to retain my ability to walk and move at will prior to my period despite that feeling of fatigue/increased gravity and some uncoordination this past week. Since being more or less ambulatory, I've been going to appointments for naturopathy, accupuncture, Chinese medicine, massage, NAET, counselling and craniosacral therapies. These, while expensive, have been helping immensely, along with changing my diet. What I think is happening now is my body's own healing abilities are engaging and rebalancing my hormones, and detoxifying from the meds. Thank goodness!!
The doctors said they've never heard of anyone else experiencing this, but when I read the product monographs, all that I experiences were listed as side effects to watch out for. On medications.com, I found posts from a few others from years ago who had missed work because of fatigue and feeling like they were going to pass out, etc. I also know another woman, who is tall, pale and has "beanpole genes" like me (eat like a horse but stay relatively thin), is anaemic and has low baseline blood pressure like me, who remarked that she had to watch how much progesterone cream she uses or she feels dragged out. I looked up side effects of too much progesterone and fatigue, dizziness and drowsiness were listed. Almost passing out and losing strength seem to me at the extreme end of the of the fatigue and sleepiness spectrum to me.
Another thing I wonder about is the three concussions I'
ve had in car accidents. I read that in about 1/2 of such injuries, the pituitary gland function can be disrupted, but all the docs are dismissing this idea as applying to me. But, in all I've read and heard, something happened with my hormones and their impact on my system here. My energy medicine practitioner suggested I had adrenal fatigue, but nothing showed up on the tests as anything but normal aside from the two that were slightly out and then normal on the following one. I have heard about "estrogen/progesterone dominance" etc but know nothing about this. How does one get tested for this?
I'd love to hear from anyone else who has any brainwaves about my experience or experienced anything like the symptoms I had, along with their recovery, etc.
Whew. Thanks! Ruby
Apologies in advance for a very lllooonnnggg post.
I'm 37 and diagnosed Jan 2008 after about 13 years of increasing pain etc. I'm very glad to find an online community of other women with endo empowering themselves and each other through the sharing of information and support.
I have a specific question related to progesterone therapies. I've been tried on four different progestin-containing meds: Prometrium ("natural" progesterone?), Megace, the Mirena IUD and the Nuva Ring and had a very bizarre and disabling reaction to each one of them. I'd like to know if anyone else has ever experienced severe fatigue or muscle weakness related to progesterone therapy. I've read and heard that many women have been helped by it, and wonder if wild yam extract could help me, but am afraid to go near it to be frank. I also read that when a woman takes progesterone, her own body ceases to manufacture it, kind of like melatonin, and so despite taking it, one can actually somehow be deficient (?). It's all very confusing to me.
Anyhow, after each medication, I experienced varying degrees of weakness and fatigue which at it's mildest was a feeling of being very dragged out and heavy/tired. Kind of like gravity being stronger and everything taking more effort and energy to do as a result. I'd have an increasingly limited amount of physical energy and run out of steam after a few steps. Sometimes be able to get to the kitchen to make something to eat, but not get back, or to the bathroom, etc. Pretty big drag needing help from my partner and friends to get to and from the loo. Very embarassing! Predicting when or where I'd run out of steam was difficult but if I overdid it, I was in real trouble, in a full-on "flop." At it's worst, I was slurring my speech, completely white and limp like a rag doll with no strength to even lift my head, muscles lax, a severe drop in blood pressure, trouble breathing and fighting to stay conscious, trying not to pee my pants as all my muscles gave out. With these more severe episodes, I'd get terrible headaches for 2-3 days and be very thirsty. I'd recover to any degree only through rest. The other thing that started happening was a very erratic heartbeat, from very slow and weak to severe palpitations, and a temperature drop.
By far the worst reactions were to the prometrium and the nuva ring, after which I was hospitalized for 5 weeks. They ran tons of tests but nothing showed up out of whack enough to be considered abnormal, aside from an off cortisol and an off thyroid at one point, both of which were "normal" on other tests. They ruled out MS and brain tumours and strokes, and ended up scratching their heads and theorizing that I was making it up or that it was somehow a mental health thing, despite assessing me and finding no MH diagnoses or presentations aside from the stress and distress of the situation. Even after stopping the meds, things would get a bit better but I'd have to be very careful how much I'd do, but then in the week and a half before my period, I'd get a lot worse. Then, things would improve halfway through my period and I'd be able to be more independant, feel more like myself. I realised that this was loosely following the progesterone level pattern, so figured the meds had made me over-sensitive to my own progesterone.
It's take four and a half months for me to retain my ability to walk and move at will prior to my period despite that feeling of fatigue/increased gravity and some uncoordination this past week. Since being more or less ambulatory, I've been going to appointments for naturopathy, accupuncture, Chinese medicine, massage, NAET, counselling and craniosacral therapies. These, while expensive, have been helping immensely, along with changing my diet. What I think is happening now is my body's own healing abilities are engaging and rebalancing my hormones, and detoxifying from the meds. Thank goodness!!
The doctors said they've never heard of anyone else experiencing this, but when I read the product monographs, all that I experiences were listed as side effects to watch out for. On medications.com, I found posts from a few others from years ago who had missed work because of fatigue and feeling like they were going to pass out, etc. I also know another woman, who is tall, pale and has "beanpole genes" like me (eat like a horse but stay relatively thin), is anaemic and has low baseline blood pressure like me, who remarked that she had to watch how much progesterone cream she uses or she feels dragged out. I looked up side effects of too much progesterone and fatigue, dizziness and drowsiness were listed. Almost passing out and losing strength seem to me at the extreme end of the of the fatigue and sleepiness spectrum to me.
Another thing I wonder about is the three concussions I'
ve had in car accidents. I read that in about 1/2 of such injuries, the pituitary gland function can be disrupted, but all the docs are dismissing this idea as applying to me. But, in all I've read and heard, something happened with my hormones and their impact on my system here. My energy medicine practitioner suggested I had adrenal fatigue, but nothing showed up on the tests as anything but normal aside from the two that were slightly out and then normal on the following one. I have heard about "estrogen/progesterone dominance" etc but know nothing about this. How does one get tested for this?
I'd love to hear from anyone else who has any brainwaves about my experience or experienced anything like the symptoms I had, along with their recovery, etc.
Whew. Thanks! Ruby