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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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Where is everyone? Jen26, how's everything at your end going? Where do you stand right now with your treatments?

I finally got my cyst removed through a laparoscopic procedure. I go back to my fertility doctor next Wednesday and be on the road to fertility treatments. My gynecologist who did my surgery said that everything inside looks great. The ovary, uterus, fallopian tubes all look great. Lets see what happens.
Replied on Thursday, June 10, 2010 1:14 AM
Hi,

Things are going fine. I've been having my injections and having ultrasounds and blood work about 2 times a week. My folics have been responding well with the injections. Recently they were at a good size so I took the injection that makes me ovulate (I did ovulate) and my husband and I tried for a couple days but i ended up getting my period and not getting pregnant(so I had another ultrasound on Monday and it showed that I had a cyst left over from ovulation which they say is normal but they want wait to see if it goes away before i start back on the injections. Btw, the injections are not bad it all. I have them below my belly button and they don't hurt at all, it only stings a little when the liquid goes in but not bad at all! So I go back next Monday for my ultrasound and hopefully if that cyst is gone I can start back on my injections.
I'm glad all your stuff is going good hopefully! Thanks for keeping in touch.
Also, my sister is going through infertility and she is having insemination on Friday.
Ill let you know how things go with my sister and me!
Replied on Thursday, June 10, 2010 12:00 PM
Hey Hopeful. How is everything going with you? have you started you injections yet?

We did 2 iui's about 3 weeks ago. and they didnt work :( i have a cyst left over from ovulation (which is normal) that i am waiting for it to go away so it looks like i'll be starting another cycle of shots again.

i never know where to reply on this website its confusing. anyways hope things are going good with you.

ps i didnt know if i said, but my sister is having twins!
Replied on Monday, August 30, 2010 2:19 PM
I am 29 yrs and I have primary amenorrhea. I just wanted to let you know you are not alone. I thought I was alone!!!I know it can be frustrating especially when your doctor doesn't seem to think it's important. I am now seeing an endocrinologist/fertility specialist He told me I had a small uterus and only one ovary could be found. However he also told me there was hope of getting pregnant and I'm going to tell you all the same thing. With God's help all things are possible. If we believe in these words one day will soon come when we will all feel normal like a woman!!
Replied on Friday, June 11, 2010 12:20 AM
Thanks for the encouragement Stewt! It's great hearing that there are other girls going through all these procedures and to know that my sister and me feel good. My sister had an ultrasound and they said they couldn't see her ovaries. (or maybe it was just one side) However she has started taking injections and they could see it. I hope all your your efforts towards fertility goes well. Keep us updated. God is amazing!!!
Replied on Friday, June 11, 2010 12:25 PM
It's definitely a relief to know I'm not the only person in the world with PA. I will keep you all posted...my next appointment is on June 28th. Hopefully I will start treatments.
Replied on Friday, June 11, 2010 12:52 PM
Hi everyone I am just giving some updates on my follow-up visit today. I started treatments today using vivelle dot patch and will continue it for 8 weeks. I should start Prometrium (natural progesterone)on Aug 2 for ten days. Has anyone else used these forms? How did they work out? Hopefully I should have a period around August 18th or so. I am keeping my fingers crossed and I will go back to have another ultrasound.
Replied on Monday, June 28, 2010 2:19 PM
I am 25 years old and I have primary amenorrhea. My consulting doctor did not even tell me that this was the name of the condition. It's only recently after much research that I found out about it.

My story is complicated as others here may feel too. I grew up as every other girl, expecting to have my periods as my two elder sisters did before me. Unfortunately it was not so. When I was 13 years old and I didn't get my periods, the doctor suggested to my mother that I have a pelvic ultrasound done to find out what was wrong. The pelvic ultrasound report stated that neither uterus or ovary was definitely identified and that there was a structure measuring 2.3 cm that may have been a uterus, but in the infantile stage. Nothing else was done after this as my mom said that the problem was hereditary (I have two second cousins with the same problem). I have been brought up to keep my condition a secret from others as my mom told me of the difficult times my cousins had and the shame and sorrow it caused. I have been very afraid to enter relationships and the fear rejection when my condition is found out by anyone. I also want to find out more about this condition and have an appointment scheduled with a gynecologist. There are so many things I would like to say - it feels good to unburden myself to people I know and they will sure understand and won't think that I am strange. Sometimes it's so overwhelming. I will post another comment shortly. If anyone has any suggestions for me I'd be glad to know and read them.
Replied on Sunday, June 13, 2010 8:38 PM
Hi Deb,

Thanks for sharing your story. We all understand what you are going through!!! My elder sister and me both have a similar problem and are lucky that we can talk to each other about it. Do feel comfortable and free to talk and ask questions to your second cousins and us about it. You shouldn't worry or feel scared about dating. There are other girls who were very scared to tell their boyfriends, however when they did they felt relieved. Your boy friend will understand if he really loves you.

Good luck with your gynecologist appointment. They will just probably do a pap smear and put you on a pill. Just let us know how things go with you.
Replied on Tuesday, June 15, 2010 4:36 PM
Hello jen26,

Thanks for your encouragement! I really appreciate it coming from someone who really understands what this condition is like. The gynecologist did a physical examination (which was a bit uncomfortable) and asked me some general questions. I think a pap smear test was done at the same time. I had a blood test today to check my hormone levels and I will be doing an abdominopelvic CT scan done tomorrow. The gynecologist wrote something about the possibility of AIS. (androgen insensitivity syndrome) I have researched on this and have to admit it could be possible. If it is so, then I'll just have to accept that that is God's will and plan for me.

I will let you know my progress. Anyway how are you and your sister getting on? Let me know.

Replied on Friday, June 18, 2010 12:30 AM
Hi Deb84,

Please feel free to open and trust me with your feelings, so that you turn lighter. I was going through similar feelings 4 years back. I refused going out with any guy who asked me as I knew no guy will understand what I was going through, until one day when my husband came into my life and we couldn't resist falling in love with each other. He was understanding regarding what I was going through. So never underestimate love because when a guy loves you as you are your condition will hardly matter to him.

You should start seeing a fertility doctor. I had seen a gynecologist initially, who referred my file to a fertility doctor for further tests. I was initially diagnosed with Primary amenorrhea because at the age of 13, my gynecologist found the same size of the lining as you. However 19 years later she found I have 2 ovaries and a uterus.I am just not having my period without birth control pills. Have you been put on BCP yet? Hang in there!! You're not alone! Anytime you wanna talk, we are here for you!
Replied on Monday, June 28, 2010 1:36 PM
Hi Jen26,

My doctor put me back on BCP on my last visit because they want to do a sperm analysis of my husband. I'll go back July 07th and hoping we can start timed intercourse and try for 6 months. If that does not work then I will have a IUI! On my last visit, I found my hormone levels to be really low and my FSH was negative. That is really worrying me. I'll ask my fertility doctor next time I see him if I still stand a chance.
Replied on Monday, June 28, 2010 1:42 PM
So I have some really good news, my sister is pregnant!!!! They did IUI and it has totally worked. I hope that gives everyone hope because it has given me so much hope. As for me, I'm still having my injections to get my folics to grow and hopefully soon I will do the shot that makes me ovulate so my husband and I can try again.

Do you have to have injections for timed intercourse? Hopefully your husband has good sperm count, but my sisters doesn't. That is the reason they had an IUI. However it is a good thing since she is pregnant.


Replied on Monday, June 28, 2010 2:04 PM
Jen26: Thats awesome news regarding your sister. Before you know it, you'll be celebrating it for yourself too!! That great news.

Yes, I will be starting the HCG injections. I heard they're not that bad. But honestly, at this point im willing to do anything just to become pregnant!
Replied on Wednesday, June 30, 2010 9:24 PM
The shots are not bad at all! The first time is kinda scary but you'll see its not bad. They are kinda fun to mix, it makes me feel like a doctor ;)
Replied on Wednesday, June 30, 2010 10:48 PM
hi deb. this is a frustrating condition especially when you cant do much. meet your gynacologist. ask all you want to know . xpress yourself.but dont feel bad. you can go intu a relationship. tats shld not be a problem. but if you want to go intu marital relationships then you need to get an internal checkup. if your internal checkup is satisfactory [ you have a funtional vagina] then you need not worry. but if you have no vagina..this can be corrected by a small constructive surgery. marital relationship will be fine. you wont be having babies of your own. you can alwayz adopt one. isnt it? cheer up deb. there is solution to all prob if you wish to have one. be positive .
if you want to contact mee or want to know more click on to this site http://www.freewomencare.com
Replied on Thursday, September 2, 2010 1:05 PM
hi deb. this is a frustrating condition especially when you cant do much. meet your gynacologist. ask all you want to know . xpress yourself.but dont feel bad. you can go intu a relationship. tats shld not be a problem. but if you want to go intu marital relationships then you need to get an internal checkup. if your internal checkup is satisfactory [ you have a funtional vagina] then you need not worry. but if you have no vagina..this can be corrected by a small constructive surgery. marital relationship will be fine. you wont be having babies of your own. you can alwayz adopt one. isnt it? cheer up deb. there is solution to all prob if you wish to have one. be positive .
if you want to contact mee or want to know more click on to this site http://www.freewomencare.com
Replied on Thursday, September 2, 2010 1:05 PM
hi deb. this is a frustrating condition especially when you cant do much. meet your gynacologist. ask all you want to know . xpress yourself.but dont feel bad. you can go intu a relationship. tats shld not be a problem. but if you want to go intu marital relationships then you need to get an internal checkup. if your internal checkup is satisfactory [ you have a funtional vagina] then you need not worry. but if you have no vagina..this can be corrected by a small constructive surgery. marital relationship will be fine. you wont be having babies of your own. you can alwayz adopt one. isnt it? cheer up deb. there is solution to all prob if you wish to have one. be positive .
if you want to contact mee or want to know more click on to this site http://www.freewomencare.com
Replied on Thursday, September 2, 2010 1:05 PM
hi deb. this is a frustrating condition especially when you cant do much. meet your gynacologist. ask all you want to know . xpress yourself.but dont feel bad. you can go intu a relationship. tats shld not be a problem. but if you want to go intu marital relationships then you need to get an internal checkup. if your internal checkup is satisfactory [ you have a funtional vagina] then you need not worry. but if you have no vagina..this can be corrected by a small constructive surgery. marital relationship will be fine. you wont be having babies of your own. you can alwayz adopt one. isnt it? cheer up deb. there is solution to all prob if you wish to have one. be positive .
if you want to contact mee or want to know more click on to this site http://www.freewomencare.com
Replied on Thursday, September 2, 2010 1:05 PM
WOW!!!! I am not alone. I am so please to meet you all. I am a 35 year old married woman who would love to have children in the near future. I have been married for 11 years now and I pretty much just started taking hormone treatments approximately three months to date. Reason being was fear of side affects which included cancer which always kept me away from doing the hormone treatments however, P.A has been a subject of shame pain for me most of my life and after 11 years of trying to concieve with out any treatments I decided to get help. I am on the Vivelle patch and medroxyprogesterone which is a subsitute for provera so far I have been getting good results it is not as painful during intercourse and I've been getting periods every month so I praise God for that. I am so greatful for the person who started this discussion God bless you. I was so depressed today Lord knows I needed this!!!
Replied on Sunday, July 11, 2010 11:43 PM
monique35 hey soo glad your are having good results...Im also using the vivelle patch and will start prometrium on aug 2 so hopefully i get a period m anxious for the results. Tell me what are some of ur side effects using the patch...my breast is very tender and I get a clear vaginal discharge.
Replied on Tuesday, July 27, 2010 6:12 PM
@ stewt thanks for responding to my post I was really starting to feel lonely again. I also have the breast tenderness and clear discharge. I guess it is one side effects of being on estrogen treatments I think it's all the hormones building up however when you get your period the breast tenderness should lessen. As I mentioned in my earlier post I am on medroxyprogesterone and I take it the last 10 days of the month and once I'm done taking it I get a period 2 days later. I don't know if it is the same time frame as prometrium but I would advise you to ask your doctor what's expected. I know you are so excited with the prospects of having a period trust me I know and I am so excited for you!!! I am going to ask you to also trust God in this process for he is able to do all things after all he created you and is well acquainted with your body. As for your symtoms I think your on the right tract to getting your period. Be encouraged my sister lets take one step at a time while trusting God. If you want to communicate on a more itimate level via phone email your phone number at [email protected] or foward me your email address and I will forward you my number look forward to hearing from you God bless!!!
Replied on Wednesday, July 28, 2010 8:35 AM
@ stewt thanks for responding to my post I was really starting to feel lonely again. I also have the breast tenderness and clear discharge. I guess it is one side effects of being on estrogen treatments I think it's all the hormones building up however when you get your period the breast tenderness should lessen. As I mentioned in my earlier post I am on medroxyprogesterone and I take it the last 10 days of the month and once I'm done taking it I get a period 2 days later. I don't know if it is the same time frame as prometrium but I would advise you to ask your doctor what's expected. I know you are so excited with the prospects of having a period trust me I know and I am so excited for you!!! I am going to ask you to also trust God in this process for he is able to do all things after all he created you and is well acquainted with your body. As for your symtoms I think your on the right tract to getting your period. Be encouraged my sister lets take one step at a time while trusting God. If you wan't to communicate on a more itimate level via phone email your phone number at [email protected] or foward me your email address and I will forward you my number look forward to hearing from you God bless!!!
Replied on Wednesday, July 28, 2010 8:53 AM
This is a wonderful opinion. The things mentioned are great and
needs to be appreciated by everyone.
Replied on Friday, August 6, 2010 6:26 PM
Hi ladies. I wrote a message here awhile back, but forgot to check up on it. I'm just wondering - do any of you have health issues? Fatigue, weakness, low blood pressure? I have this condition, but I'm very sick on top of it. I'm wondering if it's related to my low estrogen/lack of a cycle, or to something else. Hope everyone is well. Hugs
Replied on Wednesday, July 28, 2010 9:54 AM
@dreemilyn I do experience fatigue and weakness quite often I never made the correlation but I think you might have a good point I think it's definitely worth looking into. A few months back my endocrinologist had me take a few test and she told me that I was severely deficient in vitamin D she also had me take a bone density test and my bones were thinner than it should be so she she put me on 50,000 IU of vitamin D for a week or so and it did bring my vitamin d up the reason I am saying all of this is because some of the symptoms of being vitamin d deficient is fatigue and weakness maybe you should talk to your endocrinologist about taking a test to determine whether or not you need to be on vitamin supplements I take 5,000 IU of vitamin d right now for maintenance the company I order from is purity products this is not your regular vitamin d it is Dr. Cannell's Advanced D vitamin D super formula it has help me with weakness and fatigue. I hope this info answered your question If you want to talk on a more intimate level please feel free to email me your phone number at [email protected] or forward me your email address and I will forward you my phone number God bless!!!!
Replied on Friday, July 30, 2010 8:34 AM
hi Monique
Just some updates on my visit today with my endocrinologist. I did take vivelle as well as prometrium and i ddnt get a period :( i did an ultra sound and both overies are now visible yaye!, my uterus is still small but has shwn signs of improvements in growth. He put me on Loseasonique birth control and now i dont knw what to espect :( im suppose to take these from now till april of next year when i see him again for follow-up. M starting to loose hope and i may or may not be crying right now...truth is m tired of trying this and that and end up nowhere! m just trying to keep the faith and pray that soon i can see some better results!!
Replied on Monday, August 23, 2010 2:15 PM
Hello Stewt how are you? Hope that all is well with you. I want to encourage you to remain hopeful although you did not get a period. I want you to look at the brighter side of things. The fact that your ovaries are now visible and your uterus is a litte bigger is excellent and promising news and I also want you to take into consideration that your ovaries and uterus is probably going through development that was lacking before so keep taking the pills I'm pretty sure you will get a period sooner or latter stay encouraged my sister as I mentioned in my earlier post if you want to talk email me at [email protected] God bless!!!!
Replied on Wednesday, September 8, 2010 9:30 AM
hi to all of u
i am 23 years old unamarried woman.i am suffering from same problem.i tokk pills for 2 year but now stopped it.my doctor says that my uttus is small but not so that prevent me to conceive.she says that you should start pill one year before marriage as when i use tablets my uterus size increases.But i belong to a religous conservative family.my family is not ready for my marriage.i am so dippressed. i cant live alone for whole of my life. what should i do?
Replied on Thursday, September 2, 2010 3:32 AM
Get married, start thinking about yourself - it is your life. Come out of your shell of being religious conservative family. Biologically Human beings are born to procreate like any other creatures in this world and so can you.
Replied on Thursday, September 2, 2010 11:43 AM
which religion prohibits marraige? a small uterus is no reason to stay unmarried. stay on the hormone pills. you will gradually get normal periods. get married and be happy with a understanding man. wait for the right man. dont rush into marraige. make a careeer for yourself first.
if you want to know more click on to this site http://www.freewomencare.com
Replied on Thursday, September 2, 2010 1:15 PM
thanks for your encouragement.its true that no religoiun prohibts marriage but my family thiks that no man would be ready to marry me.thay say that i will not conceive.but my doctor says that i can.my utrus is not soo much small.
now i have started taking hormones pills.i have posted a question on the website you posted.plz respond me
one again i thank you
Replied on Tuesday, September 7, 2010 1:23 AM
Hello Sanaa how are you? Hope that all is well with you. I want to encourage you to live a normal life and that means getting married provided you feel that he is the right person. Keep taking your pills, trust God and wait for results if you want to talk email at [email protected]
Replied on Wednesday, September 8, 2010 9:51 AM
Hello
Please do not be disappointed, There is a way to find a full lady in yourself. I have treated some patients of this condition. You may also try this Ayurvedic Treatment and hope that you will get completely developed Uterus and also enjoy all of your life pleasures.
Replied on Thursday, October 7, 2010 9:06 AM
 




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