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.

Thanks so much Niki68, for your words of encouragement, it means a lot coming from someone who understands this condition.

Yes am alolso 35 with primary amenorrhea i will like to meet people with amenorrhea because i thought am alone.

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.

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!

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!!!!

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!!

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!!!!

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....

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!

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...

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.

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

what are possible treatment please let us inform all your detailed story

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

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!!!!!

@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.

Hello, you are right but doctors say to take pills...then? as there is no other way.