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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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Hi Ladies,
I haven't been logging in too much due to the morning sickness but I'm at week 15.5 and the twins seem to be doing well and the 24-7 morning sickness is starting to go away.
We have our 18 week ultrasound in July so I'm looking forward to maybe finding out if they are girls or boys :D
I hope everyone on here sticks to trying to find answers and don;t give up on having children. I know it's confusing and tough to go through all of this. Wishing everyone luck!
Replied on Wednesday, June 22, 2011 4:59 PM
Hi there!

I'm glad I found other people that are experiencing similar issues.

I was 15 when I was told I had no eggs because my ovaries weren't entirely formed correctly. Because of this, the only way I can have a period is to take birth control, and I have to watch my ovaries to make sure they don't develop tumors. I also get migraines about once a month, although I used to get them every day.

I'm in much the same boat as the OP; My doctors mostly just tell me to take birth control and watch my hormone levels. I also cannot have children without IVF, though my uterus and vagina are healthy enough to do it, should I ever want to.

I'm 27 years and have had to deal with this for 12 years. The hardest part is having to tell any potential significant others.
Replied on Tuesday, July 3, 2012 6:54 PM
Hi there..i was also diagnosed with primary Ammenorrhea at the age of 16,17..Have also been put on contraceptive pills for years....how do u feel about this problem.I feel very low n incomplete,to be honest...Now given HRT for the first time,which i am told should be suitable for me...wht symptoms do u feel bcoz of lack of estrogen as i do...?

Replied on Friday, August 24, 2012 10:02 AM
My daughter is 17 and I am trying to understand how best to help her. She had a couple periods when she was 13 and one at 14 but stopped after that. I did not find out until she was 15 and I then took her to see an obgyn that put her on birth control pills. She did have periods (though not regular ) for about 6 months so she went off the pill to see if she could sustain a period on her own. Period stopped completely. I just took her to a reproductive endocrinologist and she says to just put her back on the pill to avoid long term fears of osteoporosis. I want to know what is wrong and not just start the pill again especially as she started to get thinning hair the last time she was on it. The doctor didn't suggest an ultrasound as she is a virgin and it would be painful? I am wondering for those of you that are older, do you think I should drop it and be content with the pills or do you think I should pursue looking for answers? I don't want to embarrass her or traumatized her but I also don't want to miss an opportunity to help her early in case it can make a difference. What would you have wanted your mom to do?
Replied on Friday, August 24, 2012 5:45 PM
Thanx for your interest in the same problem,i am having for years...I am recently told by my gynae that HRT is more suitable for primary ammenorrhea than the contraceptive pills as HRT is a higher dose of estrogens than contraceptive pills,but the side effects of both are breast n endometrial cancers,which i am really scared of....This condiion is actually an early menopause...so all the symptoms are the same,like hot flushes,aching joints,acne,depression,early aging which can be a worry for most girls like me...As Skin loses elasticity n collagen which estrogen is responsible for....I would suggest to find and diagnose the cause of this problem as early diagnosis might make some difference...treating the cause can help!If its by birth than nothing can be done,unfortunately....How is her breast growth n secondary sex characters?Is her thyroid function ok?I have gained alot of knowledge,living with this problem for years n really feel low atimes....Does your daughter feel depressed like i do??

Replied on Tuesday, September 11, 2012 9:14 AM
Loving mom,
Does your daughter have primary or secondary ammenorrhea...What did the gynae say? As she had a couple of periods so it can fall under the category of secondary ammenorrhea...Over the years,this problem effects you mentally as in my case....
Replied on Tuesday, September 11, 2012 9:19 AM
Dear Jenn...thanx alot for being in touch with me...makes me feel better.Did any doc tell u the cause of your ammenorrhea.Or is it genetic as your older sister has also got it?I am medium...Do u live in america?If i consider IVF,it will be free for me,as medical is free in UK...Not in US?Why do u prefer ring over birth control pills??Do u feel any aches n pains like i do or your early menopause symptoms clear off with pills/ring??
Replied on Friday, October 5, 2012 8:30 AM
Jenn..Do u find ring better than the pills?
Replied on Friday, October 5, 2012 8:45 AM
Hey Lovingmom. This condition was very hard for me to accept when i was diagnosed. This is how I feel with this condition and maybe your daughter does too. I felt very alone, but never depressed, and worried about never being able to have kids and scared to tell my boyfriend. I did tell him and he totally understood. I decided not to tell my friends because it was personal. I was diagnosed when i was about 18 and my gyno put me on the pill and i was on it until i was about 27 when i decided to see a reproductive dr. to get pregnant. The pill is good to take for the estrogen. She should also take calcium vitamins because this condition causes osteoporosis. You should have her gyno request a bone density scan. I have Osteopenia because of this condition, which isn't as bad as osteoporosis but still not good. With all that said, I went through a year an a half of infertility treatment and got pregnant and now have an amazing 10 month old baby boy. She may have a ways away for all of that but i hope it gives her hope

Hey Sadlady.
What is HRT? I'm so sorry you feel depressed. I just want you to know you are not alone.

Hi andromacke.
Just wanna give you hope that you can have kids. I'm sure you didn't read all 17 pages of this forum but there were 4 of us girls with this condition trying to get pregnant and we all did get pregnant but of course with infertility. Hope that makes you feel better and gives you hope! Doctors can do amazing things these days.
Replied on Tuesday, September 11, 2012 3:35 PM
Dear jenn! Thanks for your concern.HRT is a hormone replacement therapy for estrogens,higher dose of estrogens than in a pill...Are u taking pill?which one is good n least side effects as the side effects are so scary like cancer,my biggest worry....Did u ever have any period before 18?what about your breast developmenta as mine are very small....Hope u don't mind me asking this.What treatment u had for infertility?

Replied on Monday, September 17, 2012 8:06 AM
Hi everyone! The most serious side effect of the birth control pill is CANCER!!! which stops me from taking it on regular basis....Does anybody of u developed cancer,god for bid as a result of being on the pill for so long..........???
Replied on Monday, September 17, 2012 8:17 AM
Hey sadlady.
I was on the pill from when i was 18-27, I don't remember the name of the pill that I was on, I think i even switched pill brands a couple times. No periods before 18. Right now i'm on a low dose, Nuva Ring. I have very small breasts too, annoying, but i could still breastfeed! For infertility, i did 6 rounds of IUI then switched to IVF and got pregnant the first time! I wouldn't worry too much about cancer, the chances are low but I think you should tell your gyno your cancer concern just so they know how you're feeling about the pill.
Replied on Tuesday, September 18, 2012 3:36 PM
Hi Jenn!Thanks for being in touch with me...Your success story gives hope to all of us...How old were u when u got pregnant?Do u now think that IUI was afutile effort or is it important to have IUI before IVF?How do your joints feel with the contraceptive pill?Which one suits u best n do u get periods after your son or the same situation as before....I mean do u only bleed with the pills even now??

Replied on Tuesday, September 25, 2012 6:04 AM
HAS ANYBODY TRIED DIANETTE...?really good for acne
Replied on Tuesday, September 25, 2012 6:06 AM
Hey jenn..Is weight gain an issue with primary ammenorrhea....I think it is!
Replied on Tuesday, September 25, 2012 6:12 AM
Jenn..Were u diagnosed with primary ammenorrhea...?Do u still have this problem?Was your donor known or unknown..n were u anxious that everything goes well....I am really happy for you,Jenn.would u want to have another child aswell?
Replied on Tuesday, September 25, 2012 6:15 AM
Jenn..Why do u prefer a ring? Any benefits..?I just started a low dose bcp,yesterday...as HRT was given me terrible headaches since the last few days...I am waiting for your replies!
Replied on Friday, September 28, 2012 6:32 AM
Hey Sadlady. Sorry it took me so long to write back.
I was 27 when I got pregnant. My reproductive doctor had me do iui before ivf first but since iui didnt work, she had me do ivf. But my older sister has PA too and she got pregnant with iui so i think it really depends on the person. (I also have a twin sister but she has had periods since she was in the 6th grade) After my baby was born, i still didn't have any periods so i went on the ring and yes i do bleed with it. I'm not sure if weight is an issue. I am pretty thin. What about you? I would love to have at least one more baby but i have to start saving up money since ivf is so expensive! But i would love to be pregnant again and give my son a sibling.
Replied on Tuesday, October 2, 2012 6:26 PM
Hey Jenn...I have hypothyroidism aswell...Is your thyroid fuction ok?
Replied on Friday, October 5, 2012 8:35 AM
Jenn...Did u know your donor?
Replied on Friday, October 5, 2012 8:38 AM
I never knew the possibility of having children with ammenorrhea...Jenn..I am really happy for your son.Good luck for the next one!
Replied on Friday, October 5, 2012 8:44 AM
Dear jenn..With the ring or pills,do u feel any relief with symptoms like osteoporosis,depression,related to estrogen deficiency?
Replied on Friday, October 5, 2012 8:48 AM
I tried dianette, it didn't help me.
Replied on Sunday, August 2, 2015 10:45 AM
Hello everyone. I am new to this site and have never ever posted on any forum. I am 25 turning 26 and was diagnosed with PA at the age of 15. The doctors have still not figured out the reason yet. I am going to have an IVF soon in march. My estrogen is low and all the other hormones are in a normal range. My uterus is small and i have small ovaries. They have started me on fostimon injections. For the first week they put me on 75 iu's of fostimon. The second week they increased the dose to 150iu's for day eight and 75iu's for day 9 then again 150 iu's for day ten till the second week ends. I went for a scan and they found one folicle growing but was just 8mm or so. i am on week 3 now and they have put me on 150 iu's to see how i respond. They are just giving me these injections to see my responsse. The actual ivf is in March. My lining is not getting thicker it is just 2.3. can any one please help. I feel devastated. I got married at the age of 16. It has been almost 9 years. Plz help I feel devasted. Please help and give me some hope!!! :(
Replied on Thursday, December 13, 2012 10:38 AM
sehara my doctor told me that ivf would be my only option and he didnt have much hope for that. I begged him to let me try femara after 4 failed clomid rounds and I am 5 weeks 2 days pregnant. Do not lose hope (hug)
Replied on Saturday, February 23, 2013 5:01 PM
I know the feeling I am 35 and am going through the same thing.
Replied on Sunday, August 2, 2015 7:43 PM
Ok I'm 31 years old also have primary amnorrhea. My estrogen levels is <25 and in February my RE put me on menopur and HCG for 6 days..estrogen levels stayed the same then put me on GONAL f andHcg for 12 days still the same. I have stopped treatment with injections and going back to BCP RE is putting me on Dhea 25gm coenzyme Q10 & ovasitol but since I have been reading this blog I have seen y'all talk about HMG injections and IVF. Can one if you who was blessed with the their bundle of joy give me their whole story from the beginning. I need to make a decision if I just go straight toIVF? HELP
Replied on Tuesday, April 5, 2016 3:30 PM

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