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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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Hey girls.

I am 26 years old and I have Primary amenorrhea. My elder sister also has it. I hope you all know how I feel and it is hard not knowing what the heck is going on. I went on the pill when i was 18 years old and was on it for like 8 years and that's the only way i had periods. Have any of you had a bone density test done? I believe it is due to low hormones. I also have osteopathy and my uterus and ovaries are small too. It is however nice to know there are other girls also going through this. My husband and I want to have a baby but I'm not sure how that's going to happen!!!
Replied on Friday, February 12, 2010 5:34 PM
Hi Jen,

I have also had a bone density test done and it seems my bones have lost a little density. The doctor has told me of the risks of osteoporosis due to a lack of estrogen. At this stage my bones are OK. I was on the pill from age 21 to 31 to allow me to menstruate, and I decided at this point I didn't want to take it anymore. I never consulted a doctor until now, and at age 42 and he has advised I should go back on the pill to help with estrogen levels. I have reluctantly gone back on the pill, and am finally coming to peace about this condition. I pray you will be able to have a child, I read it is possible, so just believe it can happen!
Replied on Monday, March 1, 2010 4:13 PM
Hi jen, im 20 and have recently been diagnosed with primary amenorrhea. I had blood tests done which showed that i had very low estrogen and was high in FSH. I was sent for an utrasould, the results were not good. My ovaries and uterus have not developed yet.. your not alone i know what your going through.. i hope one day i can have kids but im not sure if it will be possibe :( i wish somone could answer the question
Replied on Thursday, September 20, 2012 6:44 AM

I am 22 years old and I have Primary Amenorrhea as well. I was diagnosed when I was 17 years old but of course I got the same reaction as most of you did from your doctor and the solution was....Birth Control. I stayed on Diane 35 for 2 years, gained a ton of weight (was 97 pounds then up to 130) and had the biggest mood swings. While I was on B.C I was getting regular periods but when I went off it they would come but only once or twice a year and sometimes for longer than a month. I was again concerned so I went back to the doctor who now decided that blood tests were in order. Everything came back clear and he said B.C was the best answer. I was 20 and now 2 years have gone by and I'm still experiencing the same problem, no periods. I have a new doctor now who thinks this is serious and needs to be diagnosed; especially in case it's affecting my eggs and therefore freezing them might be a viable option. All the tests are happening within the next month but with a doctor being so blunt about the problem it scares me. Have any of you had a Pelvic Exam done? It's good to know that we're not alone...although we are certainly in the minority.
Replied on Tuesday, February 16, 2010 10:10 AM
Hello All members of this group!
After care full reading of the views posted by this group members, I came to conclusion that you all are not treated properly, Doctors till now are not guiding you corerectly. This all I am telling you from my experience of last 30 years, as I have treated successfully lots of patients of such problem. So here I want to clear you all about the fact which is missing in your cases.
1. Taking Birth control pills will never solve the problem yet it will necessarily aggravate the situation. This should be very clearly understood.
2. There may be several factors on which the situation depends, In any such patient there may one or more cause behind the problem.
3. Hormonal (Replacement therapy) generally will not cure the problem finally.
4. There may be any developmental deffect too in such cases.
5. Some times Obesity may be the one factor behind it.
6. Any type of masculinizing tumor in the uterus or overy may also be the cause of the problem.
7. Some times there is all correct & all the tests are naormal showing but there is a problem which the patient feels.

Any way whatever the problem is after careful consideration one should proceed further in managing for the treatment of the situation.
I have treated so many patients of this type and by chance generally in maximum cases Allmighty GOD gave me success.
One time was also there when one patien came to me for having primary Amenorrhoea and was previously treated by several doctors. I do not know why any Doctor made her Ultrasound, That was lacking in all that. I have suggested her to get an Ultrasound of lower abdomen, She have done, And I saw the real cause, The Uterus was rudimentary showing just like a line only, It was the developmental deffect, So I have clearly told her that there is no chance for you, I am extremely sorry for that.
She and her husband had forced me to do something, I said what can I do when GOD had done nothing for you in this regard.
They Importuned (pressed) me for doing something for them.
I had told them OK I will think positively in this regard, But I think My answer will be lastly no.
They told that please think properly and we will contact you after 2 or 3 days.
By Chance I got a medicine name for which it was not claimed to do anything for that case, I told them on their phone I will prepare an Ayurvedic medicine for you if you will say, but I do not claiming that it will do anything for you.
They told me OK make it.
I have prepared that, and got Tremndous result by that only in approx. 40 days, She had got menstruation for 4 days and on doing Ultrasound test again there was a proper Uterus. I could not be able to think, how it happened, It was a mirracle only for me too.
If you all feel that Mine views may help you then it will be my pleasure for making happy to anyone in their life.
You may contact me throgh my website http://www.ayucorps.com
Or on phone 09810308812
Replied on Tuesday, February 16, 2010 11:35 AM
Hi all,
I am 25 and I have amenorrhea. My uterus was diagonosed to be rudimentory but I never lost hope and came across the success story of Doctor(Mentioned above) & consulted him. After 25 days took the ultrasound and there was a significant improvement in size of uterus. My medicine are however continuing and I am very positive that I will be fully cured very soon.My sincere thanks to the Doctor.
Replied on Saturday, October 2, 2010 10:25 AM
hi bc222

I have had many pap smears and they come back normal. ive had an ultra sounds of my uteris and ovaries and they are small. i just had a ultra sound of my abdomen and everything came back normal. I have also had a mri of my Pituitary gland and they found a cyst on my sphenoid sinus and i had surgery to have that drained. Ive seriously have had sooo many tests but im not going to name them all for you. its nice talking to someone who understands.

(FYI I accidently wrote osteopathy in my last reply but i ment osteopenia!!!)
Replied on Tuesday, February 16, 2010 1:02 PM
I am so glad to see I am not the only one with this problem. Just like everyone, I was put on a birth control pill and finally was able to have my first period when I was 24. When I was 15 and wasn't starting my periods, I went through numerous bloodtests, mri, ultrasounds and was just marked off by saying i'll never have kids since I don't have a uterus. 9 years later after I fell in love with my now husband, I went back to the docs to see what my chances were of getting pregnant. (I was so hurt that I refused to go to the doctors for 9 years because I had lost hope of ever being able to have kids) I went through numerous tests all over again and this time a small uterus did show up in my ultra sound along with a dermoid cyst in my left ovary. My doctor prescribed Alesse (a birth control pill) and I finally got my period for the first time. Boy was I happy to see my first period. Im not gonna lie, I was so happy. Finally felt like a woman! Ive been on the pill for 2 years now and finally stopped taking it because my husband and I are very hopeful we'll get pregnant. Im seeing my gyne in 2 weeks to see what my chances are. Has anybody gotten pregnant yet?
Replied on Tuesday, February 16, 2010 2:42 PM

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