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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 Ladies,

Below is my update:

Went for my IVF consultation this morning:
-starting with 225iu of HMG
-taking trental and baby aspirin for lining
-Vit D, Vit E and PregVit Prenatals
-a bunch of post-ovulation medications
-ICSI will be a last minute decision, if needed. It will be a call by the doctor who manages the lab
-doc will only transfer one embryo b/c of the risk of multiples for the small uterus. He said with my age, there should be no egg quality issues so one is all he's comfortable with transfering (I was hoping he would say 2!)
-If my estrogen is above 15,000 he wont transfer this cycle, he'll freeze the embryos and transfer next cycle when the estrogen is lower

Jenn - what was your estrogen amount on the day that you triggered. This info would really help me.

Had a sono ultrasound this morning and the uterus looks clean and good to go. My biopsy results haven't come back yet and they wont come until about Tuesday or so. After the sono ultrasound, the nurse said I might some bleeding so to put a pad on. My lining today was only 4mm!!! and that's before my period. I got some bleeding but don't know if it's A/F or from the sono. Doc said to expect a light period b/c my lining is really thin. Now I'm wondering what this is b/c it is light. It's been kinda continous so I'll go with A/F. I've booked my day 3 for Sunday so it's all about to begin.

Andrea / Jenn - what was you lining on your day 3's? I always have a paper thin lining on day 3 (something ridiculous like 1.6). I always have lining issues which is why doc is giving me trental and baby aspirin.
Replied on Friday, April 15, 2011 3:55 PM
AKD they never did an ultrasound on my day 3 only blood tests - I wish I could tell you that info! Sorry :( I bet mine would be low too though. Kinda wish I knew now.

I'm so excited for you! I'm so glad you're starting and you don't have to wait. I know in my heart you'll be a momma!!
Replied on Saturday, April 16, 2011 4:03 PM
Ok some crazy news today - they saw twins!!!!! : D

My beta from my blood test on Wed was 8449.

The first one is 5w5d and they saw a heart beat.

The second is 5w3d and didn't see a heart beat. It's a little early for the heartbeat so I'm back May 2nd for another ultrasound to see if both are growing and to make sure they both have heart beats!

Oh my gosh I'm still shocked and have a pic of the ultrasound so I know it's true but oh my goodness!!!!
Replied on Friday, April 15, 2011 5:15 PM
OMG!! This is great news Andrea. Congrats. I was equally shocked when AKD told me yesterday. How exciting. You're 5w5d already. How is that possible when you triggered on March 19th? This is crazy. But so so so happy for you.

I triggered last night. Going in for my first IUI this morning. I am so excited I have been awake since 4 a.m. IUI isn't till 9:00. I have 7 follicles. Sizes are 23mm, 21mm, 2 and 18mm, 2 at 15mm. i go in today and then tomorrow morning for iuis. So excited. I am not looking forward to the 2ww but at this point i just have to be positive.
Replied on Saturday, April 16, 2011 5:22 AM
I triggered on March 19th so they include in the count the two weeks prior to ovulation. They do that to determine when your due date will be (basically count from the start date of your last period for people who conceive naturally). I'm so nervous now - I really want my little blobs of cells to be ok.

I'm excited you triggered! Those follicle sizes are great! Chances are good with seven. I hate the two week wait too. We'll probably both be back in for some news around the same time. I'm back in May 2nd.
Replied on Saturday, April 16, 2011 4:08 PM
Had my cd3 scan today:
-lining at 3.6
-8 follies on left and 6 follies on right

Biopsy results came back fine so no issues there thankfully. I start my injections tonight and go for a follow up on Wednesday.

Hopeful - best of luck to you!!! Hope this is your BFP :)

Andrea - still really surprised by all the news lol. You must be ecstatic - good luck on May 2nd. Do you have to take endometrin at all or any progesterone support? What supplements are you taking right now? Just folic acid?
Replied on Sunday, April 17, 2011 2:14 PM
AKD I'm so happy for you! It's such wonderful news to hear there's no issue seen from the biopsy yay!

No supplements except folic acid. I only took the endometrin one day and I was bleeding so much I stopped and have somehow been ok so they said not to start it again. I wonder if I didn't react well to it? I'm a little freaked out and want things to be ok. I've been nauseated for about a week but last night and all of today it really bad - I wanted to throw up on people in a open house I held today! Yuck! I'm taking it as a good sign.
Replied on Sunday, April 17, 2011 7:46 PM
AKD I'm so happy for you! It's such wonderful news to hear there's no issue seen from the biopsy yay!

No supplements except folic acid. I only took the endometrin one day and I was bleeding so much I stopped and have somehow been ok so they said not to start it again. I wonder if I didn't react well to it? I'm a little freaked out and want things to be ok. I've been nauseated for about a week but last night and all of today it really bad - I wanted to throw up on people in a open house I held today! Yuck! I'm taking it as a good sign.
Replied on Sunday, April 17, 2011 7:49 PM
Andrea, did you have any other symptoms other than sore boobs before doing the pregnancy test?

I am officially on my 2ww. Today is 2dpo. The days are longer now for me and time just doesn't seem to be passing. My ovulation period was pretty painful. Had my iui like an hour after my ovulation cramping started. Lets hope the sperms and the follicles met in transit. My temps been at 98.2 since. No symptoms yet though. No cervical mucus (sorry for tmi), boobs are sore but they always are regardless. How did you guys stay patient during this 2ww?
Replied on Tuesday, April 19, 2011 5:51 PM
Yes my breasts hurt a lot, actually after about a week and a half they would hurt soooooo much sometimes I wished I could take tylenol or something. My abdomen also always deflated back to my normal self after the injections - I swell up a bit when I have 27 days of two injections but this time I didn't deflate. I started to feel sick as well. I just felt weird so I took the first preg test.
Replied on Tuesday, April 19, 2011 6:56 PM
I started my IVF protocol:
day 3 - estrogen was 111, 8 follies on left, 6 follies on right, lining at 3.6
day 6 (after 3 days of HMG at 225IU) - 8 follies left and 6 follies right - but still below 10, lining at 3

I'm really worried about my lining. After much research it looks like lining should be around 9 on the day of trigger for the best chance at success. I asked my RE and for some reason he doesn't seem worried. He said you're still early and by the time you trigger you'll be fine. I'm concerned b/c with my IUI's, the highest it went to was 8. I know I'm on a higher dose this time so maybe there'll be a better response. About 10 - 12 days of stimming and then retrieval. If my estrogen level is above 15,000 - the RE wont do the transfer this round but will freeze and transfer next cycle.
Replied on Wednesday, April 20, 2011 8:16 AM
AKD: Hoping this is your month and everything will go smoothly for you.

How are the rest of the baby mamas doing? Andrea, did you have a lot of cervical mucus during two week wait? I'm currently 9 days past ovulation and no real symptoms. My abdomens been sore for the past 5 days. Every now and then I get alternating twinges in my left and right ovary. I did a HPT yesterday and got a BFN which confirms the HCG is completely out of my body now. I haven't had the usual symptoms other people usually have so i'm almost at the verge of writing this one off and looking forward to the next round. Oh, and my temps dropped from 98.2 to 97.8 today (9dpo).
Replied on Tuesday, April 26, 2011 8:47 AM
AKD how are things going?

Hopeful - I didn't track my temp because that attempt just didn't go well and than after the trigger shot I had so much bleeding I stopped thinking about everything altogether because I was so disappointed.

I'd say it was about week three and four only that my breasts really started to hurt - sometimes so much I thought I should take a tylenol or something (but I never did). After about two weeks of that I finally took a test. But during the two week wait I had no symptoms and I had two implant! I wouldn't right it off just yet. I know a woman who did IVF and never had any pregnancy symptoms of any kind and she's now 7 months along. The only thing she felt was that she was a little more tired than usual. About week three and four I was exhausted and still am. I normally sleep 7 hours a night but now sleep 10 and have a nap most days. It's crazy!

I go for my ultrasound Monday morning to see if both are growing and have heartbeats. I'm a little stressed about that but can't do anything about the wait or what they see so I'm trying to keep busy and not worry too much.

Replied on Wednesday, April 27, 2011 3:19 PM
Andrea - good to hear from you. I am on injection day 11. After 9 injections, I went in for a scan and I have about 12 - 14 follies growing, they are in the 11 - 15mm range. My lining is at 7.5mm. I go again tomorrow for u/s and bw and I'm thinking my follies will be in the 17 - 18mm range. I hope my lining continues to thicken. Sometimes the technician sees "fluid" in the uterine sac. Did they ever say anything like that for you guys? It's not uncommon but I wonder if it's ok - I'll ask my RE the next time I see him. I think I will probably trigger on Friday or Saturday and retreival will be Sunday or Monday. I am feeling sensitive in the uterus / ovary area (I guess b/c of sooo many follicles).

Jenn - Thinking of you! How are you feeling? How far along are you? Have you gone for an ultrasound lately?

Hopeful - Good luck!! Really praying it's your BFP.
Replied on Wednesday, April 27, 2011 3:45 PM
I can't believe the day has come where I can come on and break the good news to all you ladies. Honestly, i have dreamt of this day when I too can say 'I AM PREGNANT'. I got my blood results on Friday. My beta on 12 dpo was 319. I still don't have any serious symptoms. Had really sore boobs which have lessened a lot. I go in for my ultrasound on the 7th week of pregnancy. I should be 4 weeks since my last first day of period of april 01st.
So, i was checking betabase.com and according to my 12 dpo betabase, i have a high chance of twins. I CANNOT wait to go for my ultrasound.

How are you doing andrea and Jenn?

AKD: I have been praying so much for you. This is your month!!
Replied on Sunday, May 1, 2011 6:27 PM
Hi Ladies,

Ok I like this spring for us - things are happening!

Hopeful that is such great news! You and I could be having twins around the same time!

AKD you'll be with us I know it!

So as AKD knows, I had my 8 week ultrasound this morning. I was very nervous but we got good news :) Twins it is! One is 8 weeks 3 days with a heart beat we heard at 171. The other is 8 weeks 2 days with a heart beat at 162. The one wiggling had the higher heart beat because our wee gummy bear sized baby was doing a bit of a wiggle workout haha. We couldn't be happier! :D
Hope you're all doing well.
Replied on Monday, May 2, 2011 1:26 PM
hey hopeful:thats really a great news am very happy for you
Replied on Friday, May 6, 2011 12:32 AM
Hello again girls!
I've been very busy lately, therefore no update. As I told you before I've been having acupunture treatment for 4 months now and I recently took new blood exams to see if the FSH and LH went down. Today I got the resaults and they were definitly not good. Last time I took my blood exams was in September and my FSH was then 48(!) and it's now 76(!).. I couldn't believe my eyes when I read it on the paper. I completely changed my lifestyle, started to eat more healthy, I havn't been drinking any alcohol since september and I started with acupunture and herbal treatment and the numbers just ran away in the wrong direction... I've been going without my period for 1 year and 3 months now and I guess that it is playing a big part in the FSH value.
Everywhere I read it seems like the higher FSH the less chance for the body to respond to the injections. Guess that the best solution for now would be to start the pills again (maybe that will stabilize the body and reduce the FSH, don't know?!) until I find a good doctor that know's about our condition. I live in France and I'm having difficulties to find a good one that doesn't look at me like I'm a UFO.

I did an ultrasound not long ago and they found the uterus and the ovaries (with some difficulties) and he even saw a follicle. That was a relief! They are in an infantile state though, but they are there! :)

Andrea, I was reading that your FSH was sky high and you first got told that you had severe ovarian failure, right? That's what the doctors think I have too and the only option seems to be egg donation. Which medications were you put on since your FSH was so high? Oh, and by the way! Congratulations Andrea, I'm so happy that you are pregnant. It gives so much hopes, you must be thrilled! :)

Good luck to everybody, I hope this long way to getting pregnant soon is over with a happy ending for all of us!
Replied on Monday, May 9, 2011 12:23 PM
Hopeful I'm sooooo happy for you! It's been such a long journey. Any news on twins or just one?

Andrea how are the twins :) It's kinda nice having twins (two for the price of one)

ADK any symptoms? I think about you all the time. When do you get blood work? What are you taking? Any progesterone?

Sanaa any updates from you? Have you started any treatment?

As for me: I will be in my second trimester on thursday already. Everything is going good. I have 2 months still 'til i find out what i'm having. I never got any morning sickness. I guess i just got lucky.
Replied on Monday, May 9, 2011 12:26 PM
Andrea: You're right. We're only 3 weeks apart. I go in on the 18th (a week this wednesday) for my first u/s scan. I am honestly so excited. Good to hear your lil beans are doing good and have healthy heartbeats.

Sanaa: Thanks so much. I hope this gives you hope that everything is possible as long as you stay positive. Never give hope and never let doctors tell you pregnancy isn't possible. Because Jenn, Andrea and myself are great examples that everything is possible.

Maria: Great to hear they found your lil ovaries and uterus. Don't worry if they are infantile. The size will grow once you start on hormone pills.

Jenn: I know. It still hasn't hit me that I can actually be pregnant right now. I go in for my u/s on the 18th to find out how many little sacs I have. I am really hoping for twins but anything will go at this point. I too don't have any symptoms yet other than the fact that I am hungry ALL THE TIME!!
Replied on Monday, May 9, 2011 3:14 PM
Jenn - no symptoms at all. I am 3dp5dt. Embryologist told me that I have brown eggs and that the embryos have poor development. One is a morula and the other is a grade 2AB. I don't know how to feel about this. I'm trying to be hopeful - just hoping for some signs. But so far, absolutely nothing - no twingins or cramping or anything. I know you said you started feeling them 3 days after the transfer. I know my chances are real slim given the poor embryo development and the brown egg issue - ughh!
Replied on Monday, May 9, 2011 4:30 PM
Hi, its Becky. Im 14, nearly 15 and from the UK.
I know I am still young, but I have all the signs of puberty including pubic hair (sorry for the detail, we're all girls right?) breast development etc. but no period.
However, I have been having heavy discharge for 2 years now. It changes consistency at different times.
The other factor to consider is that I have a very small vaginal opening. I have tried to become intimate with others, as a teenager does, but little fits up there, it seems I have a bone which makes the gap smaller.
You have all gone through this, and I would really appreciate some honest advice. These are my questions:
1. Is it possible to have PA although I have discharge?
2. What could this 'small vagina' be?
3. Does PA have a link to my small vagina?
4. What can I do to 'fix' it as soon as possible?

Please don't judge me, I am just seeking advice. I have talked to my mum and GP about this, but it frustrates me because they BOTH keep saying the same thing 'your time will come' and 'just be patient, everything is fine' but I have a feeling its not, but I am embarrassed to explain the whole 'vagina size' story as its not appropriate with my mum.
I dont mean to be over panicky, just curious, I am the last in my class to start and just want to sort it out and be a normal woman.
I am not only worried about not having children, but not ever having sex...
Please help, Much appreciated.
Thank you!
Replied on Wednesday, May 18, 2011 12:27 PM
Hi Becky,

I'm glad you found us. I remember at your age being very nervous about my future. I had the hair but no breast development. The first step you need to take is get your blood test done to see where your hormonal levels stand. This will determine what kind of PA you have (ie. hypothalamic or another type). I have hypothalamic meaning that the signal between my pituitary gland and ovaries does not function. You need to get an ultransound done to see if you have uterus and ovaries. I know you are young, but I did all this when I was 15. Are you taking the birth control or any other hormonal pills? You could just be a late starter, some normal girls start their period at age 16. If you don't get a period by age 16, then it's considered that you have PA. The fact that you have hair and breast development is very encouraging. What you can do at this stage is only what is in your control, which would be to do the MRI's (to see the pituitary gland), bone density scans, ultrasounds and blood work. After all these results, the doctor can help you determine your best protocol. It sucks that your GP is of no help.

In terms of the small opening, I still sometimes have discomfort with my DH. Do you have any mucus or is it really dry? Going on the pill seemed to help me a lot, I got monthly bleeding and it may have helped me internally. Good that you're being pro-active and starting to get things aligned at such a young age. It will only be for your benefit :)...best of luck!!
Replied on Thursday, May 19, 2011 9:39 AM
Thank you so much for the prompt reply! (:
I am very keen in getting all those tests done just to check, but I have already approached my GP and she has done little except to say I should come back once im 16.
I suppose I will just have to wait for now...its just frustrating because I want to sort any problems as soon as possible and be able to avoid more problems in th future.
My dream in life is to have children, its what I most look forward to.

What's DH? I have mucus nearly all of the time.
I first thought the reason for the small gap was that the hymen wasn't broken, but I dont seem to have one. There is a fleshy material which cant be broken as it goes down into bone, which narrows the hole. Any ideas?
Thank you for you're support! So much appreciated :)
Replied on Thursday, May 19, 2011 10:15 AM
Hello ladies,

How is every one doing? Hope that all is well with the soon to be moms and every one else. I have a question if any of you had a normal FSH but not producing eggs I just started seeing a fertility specialist and she saidvthat my Fsh is normal for my age but progesterone is very low and I am not producing any eggs she said that she will put me on medecine to se if will start producing eggs does any of you have a similar situation? She said that that people with PA usually have high Fsh but mines is normal I am a little worried I want to have a baby so bad if ny of you could respond to this post would really appreciate it. Hi AKD84 how is everything going with you?
Replied on Friday, May 20, 2011 3:53 PM
I have just found this group and I have to say that I am suddenly wondering if I have any other options to start a family.

To give you some background, I am 32 years old and at age 14, my doctors told me that I had primary amenorrhea. Ever since I have taken hormone replacement to prevent osteoporosis and to help with my 'regular' development. All type of tests were run at the time and also more recently and the conclusion is that my ovaries do not respond to the signals sent by my pituitary gland (reason=unkown). Hence, my FSH levels are the one from a woman going through menopause.

Over the years my ovaries have grown and at times almost disappeared. My actual measures are:
Uterus: 6,7 x 2,8 cm
Right ovary: 2,3 X 1,3
Left ovary: 3.1 X 1.3

Today i found out I have one small follicle in an ovary, which is the first time ever. This makes me wonder if there is any other option besides DE. Of course my main goal is to have a family and I have known DE was my only option since age 14, but I wonder if any doctor has given you an alternative option?

In advance, thanks for your advice and for reading this lengthy post!
Replied on Tuesday, June 7, 2011 8:32 AM
Hi Cecilia,

Yes there definitely is hope for you to have a baby of your own. When I started TTC, I had only 2 follies on right and 0 on left, the nurse said that things don't look good. When I started in the injections, I produced about 12 - 14 follies. "hopeful2getpreg" on this forum had only 1 follicle on her base scan, she produced 7 mature follies with injections and is now pregnant with twins. So definitely don't lose and start treatments as soon as you can (egg quality over the age of 35 tend to decrease). I have egg quality issues already and I'm only 26. Where do you live and have you seen an RE lately? Good luck and keep us posted :)
Replied on Tuesday, June 7, 2011 9:18 AM
Hi AKD84,
Thanks so much for your prompt reply and for your words of hope!!
I live in the Netherlands but I will be doing my DE IVF cycle in Spain as we do not have DE banks in NL (not legal).

I have just sent my last ultrasound results to my doctor in Spain to see what she thinks, but to be honest I would like to ask my doctor in NL or Spain to try the injections first now that I finally have at least one follicle! I am just starting my endometrium preparation for my DE cycle so I do see my doctors regularly but again no one has ever mentioned injections for me.

Can I ask you what injections did your doctor use with you?

Thanks again for your reply and I will keep you posted!!
Replied on Tuesday, June 7, 2011 9:29 AM
We used the HMG injections (human menopausal gonadotrophins). It is a mixture of LH and FSH hormones that trigger your ovaries to increase the number and size of your follicles. Some women have used the menopur + follistim injections as well. I highly encourage you to go back and talk to your RE and see if he can put you on at least on set of injections to see if you will respond. Have you been diagnosed with Premature Ovarian Failure? If so, then you will need DE. If not, then you should try at least 1 cycle of injections to see if you respond. Sometimes, doctors just don't know it all (even though we want them to). Someone else on this forum also kept getting canceled at other clinics b/c she had only 1 follicle. When she switched clinics and started injections, she had a great response. When is you DE IVF cycle scheduled?
Replied on Tuesday, June 7, 2011 12:30 PM
To answer your last message (it seems I can't reply it directly), I would be thrilled if my doctor would be willing to send try at least one round of injections to see how my body reacts.

I was never really properly diagnosed in my view. My last doctor said that as I had primary amenorrhea, no chromosomal or gland related disorders I should have POF. She also said that the fact that I had never produced follicles would be a sign that my ovaries were failing.

I don't expect everything to suddenly start working but I just wish I could try the injections at least once.

I would let you know what the doctor reply to my last message (ultrasound's results).

My DE cycle is scheduled for the end of July depending on how the donor's cycle.

I will keep you posted and thanks again for everything.
Replied on Tuesday, June 7, 2011 3:42 PM
I would have never produced follicles if it wasn't for injections. I don't think one cycle of injections will affect the DE IVF protocol. Since you'll probably have to start taking meds for your lining in a month, I highly recommend that u go see your RE asap to discuss this. If you do start on the meds, your donor cycle may need to be rescheduled - don't know if that's an option. Good luck with whatever u end up deciding.
Replied on Tuesday, June 7, 2011 9:24 PM
Thanks for your good wishes!

I will try to reach my dutch doctor today to see if she would be willing to give it a try with the injectables! I can still re-schedule my DE cycle as I have not been matched with my donor yet.

I will keep you posted! Just the remote hope of being able to try at least once on my own is just amazing. If it is not possible I am grateful for the possibility to do a DE cycle, which I have come to terms with.

All the best in your journey as well, and I look forward to hearing from you.
Replied on Wednesday, June 8, 2011 2:41 AM
Cecilia - just wanted to check in with you! Were you able to get in touch with the RE or are you proceeding with the donor egg option?
Replied on Monday, June 13, 2011 1:27 PM
Hi Cecilia.

I too was told that I could have early ovarian failure. But thank god once my body started responding to HMG, i ended up producing 7 follicles in total. I too never had more than one follicle. That's one thing common in all of us primary amenorrhea patients. My doctor too advised that it doesn't look too promising. But once i started on my first cycle of HMG my baseline scan showed one. After two days of injection I went back and had 3. Then 2 days more of injections later I had 5. So our body does respond. AKD, Andrea, Jenn and I are all coming from exactly where you are and with a lot of patience and prayers all four of us are pregnant now. There is hope sweety.

Hi AKD! :) Can't say I haven't talked to you in a while!

Hi Andrea: Hope you're pregnancy is going well. I am glad your morning sickness is finally wearing off. I am 12w1d today. I didn't have any morning sickness/nausea surprisingly. I ended up having pinkish spotting on my 11w5d and started cramps yesterday. Went into emergency only to be advised 4 hours later to come back in the morning for an ultrasound. Going in for U/S in an hour. I'll keep you guys posted how it goes.
Replied on Saturday, June 25, 2011 9:08 AM
Hey Cecilla! There is hope for you for sure. It's just a long journey that you will take to get there, but it will happen!

Hey girls! I just had my 20 week ultrasound, even though i am 19 weeks and 4 days. It turns out that i'm having a baby boy! We are super excited. He is really healthy and all his measurements are perfect. I've been feeling good and every once in a while i feel him kick. It's the best feeling. You girls are right behind me :)

Hopeful- My sister had a little bit of spotting too so she went to the hospital and they said everything was fine. I guess it's pretty normal to have a little spotting with twins. Hope you get good results back.
Replied on Monday, June 27, 2011 3:11 PM

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