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Primary Amenorrhea

Primary amenorrhea is a condition when a girl has not started menstruating by the time she is 16, even though other signs of puberty, like breast development and the appearance of pubic hair, are normal. Besides hormonal abnormalities and other illnesses, low body weight or obesity, stress and rigorous exercise can cause primary amenorrhea.

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I am 31 yr old, and I have amenorrhea. I would like to chat with someone that has the same condition. My doctors do not consider this to be important and just want me to use birth control. They are not interested in finding out the cause nor to help with the symptoms. Another perspective in this regard would be greatly appreciated.

Posted on : Tuesday, October 13, 2009 6:55 PM
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Dear My Charms,

I was been really worried about having a pituitary tumor, so my doctor finally agreed to prescribe an MRI for that part of my brain. It showed that part of my pituitary gland was missing (which doesn't make sense) and the doctor who read the scan said that there was no tumor. This is great and I happy about it. My doctor still shrugs it off and she said I would have to go through invetro (sp??) in order to have children.

Has your doctor also prescribed an MRI for your pituitary? I read that the adrenal gland could cause this too. I would suggest asking for an MRI and telling your doctor that you want more tests and if not maybe switching to a doctor that has more experience may help. I know how you feel and I would like to know what causes this condition. Also, I don't want to you to just be prescribed birth control and sent on your way. It's frustrating and all I want is for you body to function properly. You can talk to your doctor and let me know how it goes.

Good luck!!
Replied on Monday, December 28, 2009 1:05 AM
Miss Jen,

Thank heavens you don't have a tumor! I don't know how serious missing part of a gland is, but I hope it is nothing fatal.

It crossed my mind earlier today, and I thought I would ask the group:

Has anyone charted their Basal body temperature?

I did when I saw a fertility specialist, and my temps were very erratic. It seemed to jump one or two degrees up or down at random.

I just thought this might be common among women with amenorrhea, since the doctor didn't know.
Replied on Sunday, January 3, 2010 2:36 AM
Hi there,

I'm 19 years old and have never had a proper period without being on the pill.

I have been to the doctors but they are very unhelpful and shrug it off as 'You don't wait to get pregnant now and having no periods is easier and I should stop complaining' I have had tests for PCOS and thyroid disorder, and I have none of those disorders and I am totally up against a brick wall.

I have had periods while being on the pill Mercilon, but when I tried pill Dianette around 5 weeks ago it didn't work and I am still waiting for a period, which is 5 days late :(

I'm so depressed about this condition and can't talk to anyone about it. My friends whom I have spoken to just say I'm the luckiest girl to not have periods, though I just want to be normal!

Is having children a totally lost cause or is there a chance of getting pregnant?

I'd love to talk to someone who understands what it's like to live with this condition.

xx
Replied on Sunday, January 3, 2010 5:39 PM
hi there, u are not alone ,there are many girls around you suffered from the same disorder i am one of them
Replied on Tuesday, March 11, 2014 12:07 PM
Hi ladies,

I have been through hell and back with this condition. It was so comforting to read what some of you wrote about the doctors/nurses looking at you like you're an alien...I can't stand that! It upsets me so much. Same applies to friends saying "Oh you're lucky!" I've been quiet in the past about not having a cycle just to avoid that reaction from people.

To be honest, in some cases when I know my lack of a period has nothing to do with the situation, I've lied to nurses and just told them I got it a week ago to avoid that reaction. I happen to be chronically sick and think that I have adrenal issues and I'm wondering if any of you have other hormonal issues as well. I'm also hypothyroid. My FSH is through the roof. My DHEA is high for whatever reason. Progesterone is normal and estrogen is low. My least concern is being able to have children, just because of how poor my health has been in the past five years. I'm outraged at how little doctors know about this condition and it feels like no research is being done whatsoever. Sometimes. I would love to talk more with all of you -it feels great to know I'm not alone.
Replied on Sunday, January 10, 2010 12:02 PM
its really very hard to accept this ... i use external hormone for my cycle to continue accept that i have normal values of all hormones but uterus size is small.the hardest part is drs don't considered it serious.
Replied on Tuesday, March 11, 2014 12:12 PM
Hi Dreemilyn,

My hormones are abnormal as well. I am obviously not getting enough estrogen. I had my FSH checked also, and I cannot remember what the reading was because I was having so many tests done and my doctor didn't seem too concerned. All she kept saying was that if i don't get the appropriate amount of estrogen I will get osteroporosis. I've gone 26 years without it, so I'm guessing I will get it. She put me back on birth control which I absolutely hate taking. She told me I needed to talk to an endocronologist and that pretty much she can't answer any more of my questions. The specialist cost me $250 at the first appointment. My doctor is looking around for another one and is just frustrating me by offering various other options but thinks only birth control pills can fix it.

I have lied to nurses that I have periods because I hate the way they look at me when I tried explaining it to them. I appreciate the fact that you all share your story and make me feel less isolated. I have 3 sisters and they always told me I was lucky to not have a period and I would just laugh it off. However I want to really yell at them and tell them it is very scary because I do not know what is wrong with me.Have you had your adrenal gland checked? I thought of having that done, but like I said I don't have the most easy to talk to doctor (I'm looking into a new one) You said that you have been chronically ill-what are you experiencing? (if that's not too forward)

I hope the best for you! Thank you again!
Replied on Sunday, January 17, 2010 3:03 AM
 




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