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To My charms,
I know exactly what you mean. People think we are weird and it is even harder when you go to the doctor. I went to the ER the other night because I had really bad flu symptoms and it was 3 in the morning. Every time someone takes my vitals, they ask that famous question: "When was your last period?". When I say I don't get my period they ask why or when was the last time. When I explain I have never had a period, they look at me like I'm an alien. It's very embarrassing. but when I say I've been diagnosed with primary amnorrhea, the dumb nurse doesn't even know what it is. But its stressful and I usually keep it to myself. However only my husband and closest friends and family know and I didn't even tell all my friends.
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Replied on Monday, November 23, 2009 9:58 AM
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It is hard to explain to someone that you've never had a period. It's like you have to explain your whole life story and then they still don't understand it and you feel like an idiot. Then, they usually ask "Are you pregnant?" and then you have to explain that you can't get pregnant. It can be humiliating! There's not a lot of people that have this condition and nobody understands it unless they do have it! I haven't told anyone but maybe 2-3 people besides my family kow. Its just easier that they don't know, instead of trying to explain it to them.
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Replied on Monday, November 23, 2009 10:48 AM
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I'm 26 yrs old and have been diagnosed with primary ammenorrhea also. It's really a hard thing to go through and have yet to meet anyone who has experienced it. I cant talk to anyone about it because I get the same dumb response every time-"OOOH YOU ARE SOOOO LUCKY to not have had a period!!" They don't realize I would give anything to have a body that functions normally. My doctor also put me on birth control and I quit taking it and have an appointment to discuss the other options.
I just don't feel comfortable taking it with all of the possible side effects. She said that I cannot have children and brushed over the issue saying I could go to a fertility doctor for that...Have you had any testing to find the cause mycharms?? I did blood work, chromosome tests, ultrasounds, an xray and finanlly after I pushed my doctor and she agreed to give me a prescription for an MRI. It turns out I have something similar to empty sella syndrom, which wasn't really explained to me. I will be talking to her about that at my next appointment. I often don't trust what they say and I still fear a pituitary tumor. My advise to you is be persistant and tell your doctor that you want tests and the peace of mind of knowing what is going on in your body. Once you know what is causing it, you can begin to treat it and you will feel a lot better after you know!
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Replied on Tuesday, December 15, 2009 1:29 AM
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Miss Jenn,
I found out that I have amenorrhea in my late teens. Every doctor I have seen just shruggs it off as if I should be thankful to not have a monthly period. I hate that attitude. I do get periods maybe once a year or so. It is not predictable, always showing up in different months, sometimes lasting a month or longer. I assume it must be abnormal hormones or something worse like tumors. I have had blood tests and ultrasounds, and no cause is ever found. I JUST WANT TO KNOW WHAT IS CAUSING THE AMENORRHEA. If it is something that could be fixed, I would do it. Each year I feel more and more like I am losing my chance at trying to have a child with the man I love. I have all the necessary reproductive parts, so why do I have amenorrhea? There must be some reason... and that is what I am looking for...
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Replied on Thursday, December 17, 2009 6:59 PM
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As a doctor please do tell me about the investigations that may have been done and what other problems if any has been detected. The only hope for such patients is ACUPUNCTURE
All the best,
drvka
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Replied on Monday, December 28, 2009 12:12 AM
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