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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 guys this is soo frustrating I had given up n stopped taking the bcp but after reading some of these i have decided to start taking them again.I have small ovaries and small uterus but they are present.I also have low estrogen my RE told me its possible to conc but just need to jump some hurdles I never knw it was gonna be so many. He put me on bcp for 6 months n i stopped taking them after 3 months. Now m gonna start again sigh!!!! I only have periods when i take them anyways. I have another app with my RE in april m just hoping I would get even a tiny bit of good news.
Replied on Tuesday, February 22, 2011 1:04 AM
stewt - I feel your pain. This is all so hard. I wish there was a magic wand to make it all better quickly. The key is learning to be patient. At least we got the good news from the doc that it can happen. We just have to pray, hope and stay positive about all this. Glad that you're back on board this journey - it will happen for us. There's not a lot of statistics out there for primary amenorrhea which makes it difficult to continue. But don't give up!
Replied on Tuesday, February 22, 2011 9:46 PM
stewt - I know it is frustrating and AKD is so right about having to be patient - that's one of things I've really had to learn. It is important to stay on the bcp if your RE prescribed it. And it sounds like there is hope, I have low estrogen, small ovaries and a small uterus and have responded very well to Repronex and Puregon injections. I never get periods unless I'm on the bcp or have taken the injections.

AKD - I'm on my way to pick up my injections for this cycle - I start tonight! I have so much Puregon left from January and wish it could be used after 28 days but it can't. So I've started calling pharmacies in my neighbourhood to see which ones can get me generic versions for the next cycle.
Replied on Wednesday, February 23, 2011 8:09 AM
thanks guys...I knw i have to b patient thats something m working on. I wish I had started this earlier. At least i feel more female now that i have periods with bcp and hopefully one day It will happen on its own and get a little one before I get to menopausal age. @Andrea I will ask my RE abt Repronex and Puregon injections
Replied on Wednesday, February 23, 2011 12:19 PM
For anyone trying to get pregnant the old fashioned way (BMS no IUI or IVF) I read recently that Evening Primrose Oil can help make sure your cervical fluid is optimal. You cannot take it after you ovulate or if you think you are pregnant however because it can cause your uterus to contract and we don't want that. So only take it from the time you get your period until before you ovulate. I'm going to try it just for the heck of it. Also another fact I mentioned before but never knew and think is huge is that if anyone uses personal lubricants they can actually slow down your partners sperm. I asked our RE about it just to see if this was true and it is. You can get one called Pre-seed that is the right PH balance and consistency. Kind of crazy! I'm sure there are a lot of people who use these and don't have a clue that it can slow the little guys down!
Replied on Wednesday, February 23, 2011 8:17 AM
Andrea - when are you going to get your period? Best of luck on this cycle! Here's hoping that it's the lucky BFP for you :) Yes, puregon and repronex are super expensive. I have gotten lucky b/c my clinic has many patients who ordered too many from the UK and are trying to sell the generic versions. So I just call the people on the list and pick up the injections from them. It's about $18 - $20 / vile instead of the $60 / vile for repronex. I'm going to cut out caffeine starting today. Also, doing acupuncture this round with a fertility specialist acu offered through my clinic. Most likely I will trigger next week if all goes well. My estrogen level seems to be all over the place though so lets see how it goes.
Replied on Wednesday, February 23, 2011 8:59 AM
Hey girls! Sorry i haven't written in a long time. i have started my ivf journey. Ive had lots of appointments & injections! My folicles are growing big. I have like 5 folicles about 19,18, 17 sizes and like 3 smaller ones on my right sides. Ive been taking 3 or 4 vials of menopur for 2 weeks, 225 folistim pen, and i took 3 ganerelix shots. I finished all my shots today except for tonight at 11:45 pm i take my hcg (pregnyl) shot. And tomorrow i have blood work and friday i go in for my egg retrieval!!! I will be under (asleep) for that one. Then 4 days after that i go in for the embryo transfer, then bed rest for 2 days. So im praying this works! Ill try to be better at keeping you girls updated.
Replied on Wednesday, February 23, 2011 11:09 PM
Jenn this is so exciting! Good luck on the retrieval on Friday! I'll keep you in my thoughts and prayers and hope for the best!
Replied on Thursday, February 24, 2011 9:47 PM
I got my period on Monday and started injections on Wednesday this week. I hope it's BFP for both of us!! I've had some tea with caffeine but will be switching to organic decaf green tea chai. I tried to drink coffee this month but I find now I can't really anymore - even half a cup makes me jittery. Let me know how the acupuncture goes - some women in my yoga class go and I've been thinking about.My estrogen went up and down with each of my previous cycles but worked itself out before triggering. Crossing fingers for you!!!
Replied on Thursday, February 24, 2011 9:44 PM
Jenn - Exciting news! Those sound like some great follicles. What is your lining at? Hoping it's a BFP with this one :D

Andrea - woohooo on A/F and great to hear that you've started your next cycle. When do you go in for your first follow up? I'm going tomorrow for my 2nd acupuncture appointment and another bloodwork / ultrasound. I started at 75IU of HMG, then 150IU and currently at 225IU. My estrogen this cycle hasn't been rising at a steady ready (because of the cysts I had I guess) so the dose is the highest it's been. Hoping tomorrow's bloodwork is better. I've cut down to 1 cup of caffeinated tea per day and also trying to cut down on my dairy intake.
Replied on Friday, February 25, 2011 9:13 AM
AKD I go for my first blood work and ultrasound on Monday. I've never started with Puregon in the first week so I'm hoping there's more growth early on and then I won't have to go for 25 days.

I hope the acupuncture helps - do you find it relaxing?

Keep us posted!
Replied on Friday, February 25, 2011 2:20 PM
So im done with the egg retrieval! Everything went good. She took out 6 eggs. The surgery went fast. I was a lil sore after and it hurt to pee. They told my husband that his specimen was they best they have seen this week! He was very proud. Haha. So they are going to inject 3 eggs with sperm and the other 3 eggs, they will put in a dish with sperm and let them find each other. I got a call today and they said that my embryo looks "pretty" and "grade A" So I go back on wed. for the transfer! I can't believe this is happening!!!
Replied on Monday, February 28, 2011 10:36 AM
jenn - eeekkkk!!! This is all so exciting. So you had 6 eggs, did they all translate into embryos? How many embryos are they transfering into you on Wednesday? Please keep us updated on your journey. Are you going to have bed rest for a while after the transfer? Will you be checking what your lining will be on the day of the transfer? What was your lining on the day of the retrieval?

Andrea - I find that acupuncture is really relaxing. I usually have anywhere between 12 - 17 days of injections before I trigger. I know it costs soooo much!!!

AFM - It's CD14 and my lining is at 7.7, 3 follies at 13.4, 12 and 12. I go back on Wednesday. The cycle that I got pregnant, I had the lowest number of injections (12). This cycle I'm already on injection day 12. The good thing is that my estrogen level is back to being really good. Looks like I will probably trigger some time this weekend.
Replied on Monday, February 28, 2011 11:57 AM
Yay Jenn!!!!!!!!!! This is sooooo exciting!

What did you try before this? Just curious because I just want to go straight to IVF but my RE says to be patient lol

AKD sounds like you're doing well and it's good that your estrogen is up agaIn :)

I went for my ultrasound and blood work today and we're uping my puregon dose by a click for the next two days - was on one for 5 days
Replied on Monday, February 28, 2011 7:32 PM
Andrea - are you on puregon only? No repronex this round? What was your lining on day 3 and what was it today? Did they see any follicles?
Replied on Tuesday, March 1, 2011 8:40 AM
AKD - no I'm on 75 Repronex and was on one click of Purgone but have increased it to two clicks. Have an ultrasound and blood work tomorrow morning so I'll know the new measurements soon. Three follicles on the left and 5 on the right but all too small to chart as of Monday when I had my first ultrasound.
Replied on Tuesday, March 1, 2011 10:05 PM
Andrea - hope you had a good ultrasound and bloodwork today. What's the update?

Jen - hoping the transfer went well today. How are the embryos? How you feeling?

AFM - follies at 19, 17 and 16. Lining at 7.8. Estrogen at 5800. Looks like I will probably trigger tomorrow with IUI on Friday and Saturday. Good luck to all of us!!!!
Replied on Wednesday, March 2, 2011 12:30 PM
ok so my left ovary has a follicle about 9.5 and my right abot 10 and lining of 5.9. I'm back in Sunday for another - all together there are about 8 follicles but the rest are too small to chart.

Jenn can't wait to hear any updates!

AKD good luck with the IUI! : )
Replied on Wednesday, March 2, 2011 3:59 PM
Hi girls! I'm done!!! It feel so good to just relax. The transfer went really well. They had me drink lots of water before hand and i ended up peeing 3 times before the procedure because i was too full and so uncomfortable (that was the worst part.) Then they had me take valium to relax which was nice :) then they came in and checked my lining, which was at a 9, and then they put in 2 embryos. Super easy, fast and no pain. So now im on bed rest for two days and go for preg blood test on the 11th. Im still taking a bunch of meds but cant do an at home test cause my meds will mess with the results. So yea! I cant wait for results.

AKD those follicle numbers look good. Goood luck with your iui!!! So exciting that you are doing it soon.

Andrea your numbers look good to. Are u doing iui soon?
Replied on Wednesday, March 2, 2011 6:16 PM
yay that's good news!

No IUI just trying the old fashioned way. My next blood work and ultrasound is on Sunday.
Replied on Thursday, March 3, 2011 6:30 PM
Jenn - sounds like the transfer went really well. Hoping for good news on March 11th

Andrea - hoping Sunday comes with good results.

AFM - Had my 1st IUI this morning. His count was 40 million. We gave the sample at 8:20am but it wasn't inserted until 10am. The nurse reassured me not to worry b/c they keep it at an optimal temperature and it's mixed in with a liquid that keeps it alive for days. Tomorrow will be IUI number 2 with acupuncture to follow immediately. My results from yesterday were...

Left ovary - 18, 17, 16, 15
Right ovary - 20, 17, 15, 15
Lining - 8.3
Estrogen - a whopping 8429

I find out my result on March 17th.
Replied on Friday, March 4, 2011 10:27 AM
wow sounds really good!!! Hoping for a BFP on March 17th woohoo!!!
Replied on Friday, March 4, 2011 4:08 PM
I went in for my ultrasound and blood work this morning. My follicles actually were smaller than they were on Wed and they couldn't even chart them. So they are increasing my dose of Puregon and we'll see on Wed if that has done anything. Kind of discouraging since we started out with more Puregon than we used in the past.
Replied on Sunday, March 6, 2011 10:53 AM
Hey! Hmmmm I have no idea why the follie size would decrease but I've heard that it has happened before with women (who eventually did end up getting pregnant). I highly encourage you to join the "hypothalamic amenorrhea" forum on "fertility thoughts". There is a woman on there named Nico who knows EVERYTHING about fertility treatments. I post on there all the time and it's a great community for support and answers.
Replied on Monday, March 7, 2011 12:27 PM
ya it was strange :( I go back Wed for another ultrasound. will check out that site thanks :)
Replied on Monday, March 7, 2011 7:15 PM
so my lining was down to 4.9, my estrogen was down and I had spotting all day yesterday but there was one follicle that was 10.5 so I'm continuing on and will be back Sat for blood work and ultrasound again
Replied on Thursday, March 10, 2011 8:31 AM
What did your RE have to say about the spotting and lining going down? Is he / she increasing your dose at all? I believe you are currently on 75 Repronex and 2 clicks of puregon right? What calendar day are you on?
Replied on Thursday, March 10, 2011 8:40 AM
the nurses seemed worried but the RE said not to. no increase to the dose since I started bleeding. I still have spotting today but it's more like normal bleeding now. not sure why my estrogen is down. i actually started right away this time with puregon so i was expecting things to progress sooner and never saw this coming but what can you do. so I started 75 repronex with 1 click puregon, then went to two clicks and am now on three. it's funny but this whole try i felt kinda whatever about it and kinda blah like I knew something is off so even though i never thought this would happen I'm not that shocked from the way my body feels.

how are you doing AKD??? I have March 17th stuck in my head and am keeping you in my thoughts :)
Replied on Thursday, March 10, 2011 1:37 PM
Andrea - Good to hear that your RE didn't seem worried. Really hope that by Saturday you start to see a balance with this cycle.

I'm feeling good, no symptoms. I am 5dpo so it's still early. Implantation usually happens 6 - 12 days after IUI so tomorrow will be day 6. Lets see how it goes. If this cycle doesn't work, we're moving on to IVF.

Jenn - Best of luck for tomorrow!!! Your BFP day is finally here. Really hoping you give us some good news tomorrow :D
Replied on Thursday, March 10, 2011 6:24 PM
Thanks AKD - maybe we will be pregnant together :) But I do think ivf is a good idea.
I can't wait to get my results!!! Im suprised how fast it came up. I'll let you girls know.
Replied on Thursday, March 10, 2011 6:47 PM

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