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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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I'm 26 years old and I've also been diagnosed with primary amnorrhea. I thought I might be the only women in the world going through this and have never met anyone with the same condition. My doctor doesn't seem eager to help me find out how this happened, but they told me I was born with all my female reproductive organs except a uterus. I thought that I might have some complications other than the fact that I can't have children, but my doctor says I'll be ok. I just want to know how this happened.
Replied on Tuesday, October 20, 2009 1:44 PM
Hi Gia,

I know how you feel, I have been diagnosed with primary amenorrhea due to my ovaries not maturing. I don't think there is any definite reason that this can happen. I think there are many theories but the bottom line is we may never know. I feel your pain over this, it is so difficult to have this condition. So few of us seem to have it and it get's swept under the carpet by the doctors. I just want you to know that you are not alone, and that there is nothing wrong with you. Physically your body may tell you otherwise, but I want to encourage you to feel like a complete woman, don't let this condition define who you are. I struggled with my identity, but have slowly felt I have become a complete woman. I hope you will find comfort in the fact that you are not alone, and that others like myself know how you feel.
Replied on Monday, March 1, 2010 3:55 PM
Thanks so much Niki68, for your words of encouragement, it means a lot coming from someone who understands this condition.
Replied on Wednesday, April 21, 2010 2:53 PM
Yes am alolso 35 with primary amenorrhea i will like to meet people with amenorrhea because i thought am alone.
Replied on Saturday, November 10, 2018 4:23 PM
Hey there!
I just joined this group. I'm 27 years old and share with all you ladies.
You are not alone in your struggle with this!
I, too, have never met another woman in person that has had this condition, and thought I was alone, until I found this website.
I, too, have had the doctors sweep this under the rug, not eager to help, and tell you that you're fine, and have had the experience of them never wanting to find a cause or a cure or investigate it at all.
I, too, am so beyond frustrated.

Reading what all these other women have typed on here... reflecting my exact own feelings... have made me feel better for the first time in my life. No one else has ever shared my feelings so strongly or precisely before now...
I'm glad I'm not that only one fighting with my doctor, or dealing with the emotional side effects or the physical struggle. or the bullshit birth control pills or HRT.

I think everyone has a different cause for this (gonad failure, missing an organ, under-developed organs, stress, weight/health, genetic conditions, hypothalamic issues), so I think sometimes (however rarely) this may resolve for some women, but I think that must be rare.

I never get any answers myself when I ask questions... had to end up going above my gyno to see a reproductive endocrinologist.
Thought I had a good diagnosis (hypothalamic amenorrhea) but as I've never had a period without pills, I know it is primary. Called his office this week to follow-up and ask some very angry questions. Waiting on a phone call back from him to really lay into him.

I wish I had answers to your questions related to how this happened. I think we should all rally and demand answers from these joke-ass "let me google what you have again" doctors and get the information we deserve and pay for!

Good luck ladies. I'm here to chat here or on FB if anyone wants to talk. I live on Long Island (NY), and if anyone's local, I'd be happy to bring you out for drinks. You know you need one.
Replied on Tuesday, June 23, 2015 6:59 PM
Hi! I am 31 years old and was diagnosed with PA when I was 17. I have not investigated into this condition at all and juar ignored it for the most part until now since it has not affected my for at all; heover, I just got married this year and am looking to build a family with my husband. Has anyone had any successful cases with IVF? I live in Brooklyn and would love to connect with anyone that is local!
Replied on Monday, December 4, 2017 11:07 PM
I'm 33 yrs old and have never met anyone that has primary amenorrhea. I've always felt issolated because of it but knew that there would be somebody else with the same condition as me. My doc doesn't seem concerned and it didn't become an issue until I tried to start having children. I've never had a menustraual cycle in my life, except when I take Provera or birth control pills.
Replied on Tuesday, November 10, 2009 11:55 AM
Hi kiersmomg1,
I felt exactly the same way as u thought...that i am alone with this problem..But logging into this site made me knw that there r so many girls like me suffering with this prob.But i hav hypothyroidism aswell.I feel depressed abt my life n have painful joints...Does anybody around feel the same symptoms as mine...I hate my life due to this medical problem that gives me low self-esteem..Hope,u girls understand my feelings....Will this condition go like this till my last breath or any treatment for it????I dnt knw...Why wud the doctors care???I wonder!!!!
Replied on Saturday, December 4, 2010 7:59 PM
I feel the same way too I have very low self esteem and I also have joint pains especially when i stoop I only get a period when I use bcp its very depressing and frustrating!!!! big sigh!!
Replied on Thursday, January 6, 2011 5:44 PM
Hi kiersmomg1,
I felt exactly the same way as u thought...that i am alone with this problem..But logging into this site made me knw that there r so many girls like me suffering with this prob.But i hav hypothyroidism aswell.I feel depressed abt my life n have painful joints...Does anybody around feel the same symptoms as mine...I hate my life due to this medical problem that gives me low self-esteem..Hope,u girls understand my feelings....Will this condition go like this till my last breath or any treatment for it????I dnt knw...Why wud the doctors care???I wonder!!!!
Replied on Saturday, December 4, 2010 8:00 PM
Hi kiersmomg1

Please tell what are the things you've experienced because of this condition. I'm just curious because i have never met anyone with primary amnorrhea. I know you feel like you are the only one and this can be very sometimes depressing. I know you can't have children on my own and that you would need a surrogate.
Replied on Tuesday, November 10, 2009 3:44 PM
I would like to share my story will all of you who are in this group having Primary Amenorrhea.

I was informed that I had this condition and that I will never have children during a visit on my 18th birthday. I felt it was the worst birthday and went through years thinking that I was less of a woman and wondered if anyone would ever choose to spend their life with me knowing full well I would not be able to give them a family. I am 29 years old now, happily married, and I am the proud mother of a beautiful 3 year old son, who was conceived without any doctor's assistance. I actually became pregnant a second time, but sadly lost that child (which I have read is not uncommon with women who have this condition.) My husband and I are currently trying for another child, though I know it will be difficult, and I know that I will never get pregnant again.

But, my son is a miracle that I cherish everyday. In addition if for some reason I cannot conceive again, my sister has also offered to be my surrogate and is ready to help in all ways she can. I am truly lucky,and just wanted to share my story with you all so you would know, that anything is possible....
Replied on Thursday, April 29, 2010 8:39 PM
Thank you sooo much for sharing!!! I love hearing success stories, it makes me more hopeful. So you didn't have to do anything to help you ovulate when you conceived your first baby? Ive been having injections and I pray that they start jump starting things. Your sister is amazing for being a surrogate mom! Keep us posted!
Replied on Thursday, April 29, 2010 9:15 PM
hello milonam,
Am glad u hav a son n also glad for u that u r lucky to hav such a gud n kind sister.Ask me,my sisters r not gud n caring towards me at all...
Replied on Saturday, December 4, 2010 7:50 PM
I'm so sorry you had to go through that! I went to a Dr when I was 16 and they didn't really know what was wrong with me. In my early 20's I went on the bcp. At 25 I went to find out what was wrong with me and I was told I'd never have children which ruined a relationship I was in at the time. I went through the same feelins for about two years and was devastated. I even opted out of teacher's college. Now I'm 32 and find out it is my hypothalamus not communicating with my ovaries and that the repronex and Puregon they are trying me on seems to be helping. It's so amazing to hear that you have a son! I'm so sorry that you lost the second and wish you the very best at trying for another child.
Replied on Friday, January 7, 2011 4:39 PM
Assalamoalaikum andrea I am following u on different sites I've joined this group because of u .. I've seen a post of u that u r pregnant now..is it true? How is it going now? Plz plz update me..is there any probkem or I hope all is going well? Best of luck to u
Replied on Tuesday, September 17, 2013 1:50 PM
what are possible treatment please let us inform all your detailed story
Replied on Friday, February 21, 2014 11:37 AM
you are so lucky in this world.I have the same condition.but doctor said me not able to become a mother.pray for us.God bless u
Replied on Wednesday, April 23, 2014 3:31 AM
I was told I had primary amenorrhea when I was 16 and that if I ever wanted to have children I would have to see a fertility doctor. So they put me on birth control pills to make me have a period.

Now, I'm 25, and have been married for 4 1/2 years. I wanted to find out if I can have children, because my doctor never told me earlier about what was wrong or why I wasn't having a period. So I went to an OB/GYN/Fertility Doctor recently, and she actually wanted to find out what was wrong. So she has done a lot of tests and said that everything was pretty much normal but my FSH/LH was high and my estrogen was low, which meant my ovaries were not functioning and if I wanted to get pregnant I would have to have IVF with an egg donor. So now I am on Vivelle (an estrogen patch) and soon to be taking Prometrium (Progesterone) to make me have a period. Its been almost 10 years and the reality is hard to face. I guess I always thought there was hope that I could have a baby of my own, but it doesn't look that way.
Replied on Sunday, November 22, 2009 2:34 PM
Hello bethtu25,
Your story is exactly the same as mine..totally dejected now.May go for surrogacy or adoption soon.My FSH is v high n estrogen too damn low.I bleed with birth control pills aswell,n not without them.Not taking them for the last one year n had no periods...Feel v sad abt my state n having joint aches n pains due to v v low estrogen levels...No hope to have my own children ever!!!!!
Replied on Saturday, December 4, 2010 7:25 PM
I have talked to several doctors about my amenorrhea, and each of them acts like there is nothing to worry about. I know I shouldn't but I feel like I am less of a woman. I would love to have children with my honey of 2+ years, but that doesn't seem possible. Each doctor suggests birth control pills for a year or more, then stop to see if I get pregnant. I don't like how the birth control pills makes me feel. I think I have gotten used to the low hormones, and birth control pills flood my system with more hormones than I am used to. It makes it a little easier to know there are women out there with the same condition. Have you ever tried to explain amenorrhea to a girl friend and end up feeling so wierd?
Replied on Sunday, November 22, 2009 10:38 PM
@mycharms, Birth control pills have their own side effects. Taking regular pills can have a devastating effects on your health. Don't get misled, by what others say. Go to the experts and take the necessary help.
Replied on Sunday, September 29, 2013 12:24 PM
Hello, you are right but doctors say to take pills...then? as there is no other way.
Replied on Friday, June 24, 2016 7:32 PM

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