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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 my charms. you have not mentioned whether you have never menstruated or have very irregular periods. irregular periods or delayed periods is not a pathology[ disease]. did you have an ultrasound done? you may be having PCOS. This is a condition which can be cured.
if you wanna know more bout this or want to contact me plz click on to this link http://www.freewomencare.com
Replied on Thursday, September 2, 2010 1:31 PM
Hello ladies. I hope evryone is doing well. I just came back from the reproduction doctor and was informed my my ovaries and uterus are now normal so this is good news. My doctor is now running a number of tests and giving me another mri appt. For next Saturday to look at my brain to see why it isn't sending signals to my ovaries and uterus. My fsh and lh levels are still very low. After my appt. Next week I will post another reply to let u guys kno wat happened. Hopefully everything goes well and I will be pregnant in no time. So any news for anyone else?
Replied on Thursday, September 9, 2010 6:18 PM
Hello ladies,
Just a quick update! I was injected with leuprolide acetate yesterday to see if it stimulates my fsh and lh levels. I back to the doctor today to draw some blood to see if the leuprolide acetate had any effect on me. I will get my results back in 2 weeks. I'll keep u guys updated! xoxo
Replied on Tuesday, September 14, 2010 9:20 PM
Thanks for ur update! Glad to hear you're getting the ball rolling!
Im back on my menopur injections, starting a new cycle again!
Replied on Tuesday, September 14, 2010 9:59 PM
Hi everyone just updating...
So my doc started me on loseasonique and i have been taking them for 4 weeks now however i missed 2 days cuz i was out of town and forgot to bring them with me. Now I have period ( first time)into my second day :)thing is m not sure whether i should continue taking the pills or no so m going to call my doctor tomorrow. M definately relieved to see bleeding but not so excited about the pain n discomfort that comes with it lol oh well...I will update further as things changes
Replied on Friday, September 17, 2010 7:36 PM
Hi Stewt I am glad that you are finally getting some good results!!!!
Replied on Saturday, September 18, 2010 12:35 PM
Its good to read things are going well with a lot of the girls here. Sorry I have been absent for a bit. My last cycle, my doctor recommended I do IUI. I took 75 iu's of Puragon for the first two dates. When puragon didn't do anything for my lh/fsh/estrogen numbers then he up'd my dosage to 150 iu's. So the 5 tiny eggs that i did have in my ovary weren't growing. On my cycle day 9 my fertility doctor cancelled my treatment and said we'll have to move onto something else since puragon didn't do anything. I've actually decided to change my fertility doctor now just to get second opinion. I feel he really didn't give my treatment that much time. Our body works slow especially when it comes to my tiny ovaries. How long did it take you guys to see any changes in the sizes of the eggs? So thats where i stand now. I'm meeting my new endocrinologist tomorrow. Will definitly update you guys on what they put me on next.

-Jen26, how's everything going at your end? How's your sisters pregnancy coming along? What injections did they give your sister for her IUI and what was the dosage?
Replied on Tuesday, September 21, 2010 10:17 AM
Hey Hopeful. How was the new endocrinologist??
Things are going good. My sister and i both took Menopur to get our follicles to grow and Novarel (to ovulate) before iui. I'm not sure what the dosage was.
I think that's a good idea for you to see another dr to get a second opinion. It might take time for you ovaries to get stimulated since they never have been. It takes me about 2 weeks for my follicles to get to 2cm. (That is the size you want them to be at to do iui). I hope the next dr takes more time with you.
So, my sister found out shes having a boy and a girl!! As for me, im just taking my injections and having all my ultra sounds and blood work.
Replied on Monday, September 27, 2010 3:24 PM
Hi Ladies.
I posted in here a while back & just thought after reading your posts that I would give you a run down on my story. Maybe it will encourage some of you. I was diagnosed with Primary Amenorrhea due to functional GnRH deficiency when I was 17 after not having a period. I was referred to an endocrinologist who I still see now at age 28. I was given a bone density test which showed brittle bones due to lack of estrogen. I had an ultrasound of the uterus & ovaries which showed I had an undersized uterus (at age 17) I was sent for an MRI scan to check the function of the pituitary gland. Thankfully this came out all clear so no tumour however this meant I had unexplained Amenorrhea which is often difficult to treat. I was put onto a form of estrogen to try to stimulate my body into producing the right hormones but this did not seem to have any positive effect, due to the link at that time to hormone replacement therapy & breast cancer I decided to stop treatment & wait until I wanted to conceive. I met my husband at the age of 21 & was honest with him from the start about my condition, he chose to stay with me even though I might never have children. We discussed fert. treatments, adoption & other options before marriage & agreed we would do all we could to have children naturally first.
We married at the age of 24 & started trying to conceive about a year later. We met with a fertility specialist & decided to start with IUI (Ovulation induction) I had another ultrasound & it showed the uterus was now of normal size. I started taking the BCP (Birth Control Pill) which caused a pill induced period but did not bring on ovulation. I started FSH (Gonal F) injections to bring on ovulation however my hormones didn’t react as they should have. The second cycle we introduced the hormone LH alongside FSH but still no luck. I was then given the option to continue with further rounds or move on to IVF. I opted for IVF as this seemed to have better odds (although was far more invasive) I was put on the waiting list for 18 months & started in Feb this year. I did Gonal F & Buserilin injections this time & managed to get 2 eggs good enough to fertilise. One went to 8 cell & was transferred on day 3. The other only made it to 7 cell so was not of freezable quality. The day 3 transfer resulted in a pregnancy - Praise God! I am now 29 weeks pregnant with a precious little boy. Unfortunately though I did end up with severe OHSS (Ovarian hyper stimulation) on day 13 of the two week wait & I was hospitalised for 6 nights. My ovaries swelled to 16cm each (almost the size of footballs) which took about 4 - 5 months to go back to normal size. I think I was a rare case as not many people are hospitalised for OHSS. I hope this doesn't scare any of you too much. I hope it will encourage those of you who have an undersized uterus etc.
Replied on Tuesday, October 5, 2010 2:22 PM
Part 2
Just so you know I would absolutely go through it all again if I knew what the outcome would be. This condition is not easy to live with I know, it often comes with much shame & feeling like you are less of a woman. I will continue to track your progress & hope everything goes well for all of you. If you have any questions or just want to chat feel free to private message me or post on here & I will do my best to help in any way I can. I believe with God anything is possible. We just have to keep the faith alive & trust in him!
Replied on Tuesday, October 5, 2010 2:23 PM
Hey Jenn. Thanks for the update. Your story sounds a lot like mine! So did you try iui or just go straight to ivf? i just did my 2 round of iui about a week about and i'm in the 2week wait!. So far i dont have any symptoms at all :( I guess if im not preg, then i will maybe do iui 1 more time or go to ivf. Thanks so much for sharing your story. It's really encouraging!!!
Replied on Thursday, October 7, 2010 5:56 PM
Hi Jen26

Yes I did 2 rounds of IUI but my hormomes were not responding as they would expect to see so we decided to go straight for IVF after that rather than waste all the govt. funding trying to get the IUI right. I thought the chances of IVF working would probably be higher as you know that the egg was fertilised and of good quality before it was transferred where as with IUI there is no guarantee that the egg would fertilise. Wishing you all the best with the 2ww and I look forward to hearing how it goes.
Replied on Saturday, October 9, 2010 6:48 PM
JennC, thanks for sharing your news. It definitely is very encouraging! My story is very much like yours too. My last iui cycle got cancelled because Puragon didn't do anything for my hormones either. Ive changed my RE now because I felt he was handling my case as any infertility patient and not as a primary amenorrhea patient. My new doctor has given my estrace (estrogen pills) for the time being. He said since my estrogen level was so low, any LH or FSH injections won't take effect. I will be trying IUI with Menopur injections in December. Ive decided to take a break from all of it after I had a minor breakdown when my last cycle was cancelled (it just gets very frustrating). But reading your post definitely gives me hope! Which injections were you taking during your IUI's and IVF?
Replied on Monday, October 18, 2010 10:26 AM
 




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