Hi Ladies

I was just reading your stories and am amazed to find others with this condition! I am 27 yrs and was diagnosed with Primary Amenorrhea at the age 17. After many tests it was concluded that mine is caused by functional GnRH deficiency (low LH levels causing low estrogen levels) I was referred to an endocrinologist at the age 17 and have had a bone density test which showed my bone age as 12-13 yrs. I have also suffered a few broken bones including a vertebrae in my back last year due to brittle bones. I was prescribed Ethynylestradiol as a hormone replacement but stopped taking it after a couple of months after hearing about the possible long term effects. I also took the pill for a few months and had two pill induced periods (only periods in my life) I had an ultrasound done which showed my ovaries were normal but my uterus was undersized - this was done at age 17 and I am not sure if this has changed. I then had an MRI scan done which showed the pituitary gland is normal (no tumor) Phew! My endocrinologist told me there was no need to come back and see him until I planned on having children. I have been married 3 years and in 2008 I attempted Ovulation Induction (2 months) but my LH levels were not responding as they should. I then went on the waiting list for IVF here in New Zealand for 12 months. I have just started my first cycle and hope to have an embryo transfer at the end of this month. We are so hoping this will work as we both would love to be parents. I too suffer from vaginal dryness and did have smaller breasts until recently as the hormones have caused me to increase a couple of cup sizes. Woo hoo!
Wishing you all the very best... Baby dust to all!

Hi JennC.

Welcome to our group. I have had a few bone density tests done too and I was diagnosed with osteoporosis. I take calcium with vitamin D everyday and try to go for walks a few times in a week. Also I was on the pill for many years and that helped me with my bones. Thanks for sharing your story Jenn.

To all:
So I went to the reproductive doctor the other day and my doctor gave me a plan for getting pregnant. This is what I'm doing, taking a lo estrogen pill for 14 days and then stop taking the pill. After stopping the pill, I am supposed to have a period. When I do, I call the doctor and she schedules a X-ray to look if my fallopian tubes are open. If they are, I am given injections to see if that will do the trick! SO that's the plan for now. Wish me luck!

Feel free girls to join the new Face book page that sjackson has made!
http://www.facebook.com/group.php?gid=346801417656&ref=search&sid=563669829.3204612220..1

Hey Jen26,

So when I went in, I was given Provera which is also a low estrogen. My doc told me to take it for 5 days! If I was to get my period then. On the 3rd day of my period I had to get blood work done for LH/FSH level and get an ultrasound done for my uterus/fallopian tubes etc. Well, my fifth day ended Friday and no period :( I have my ultrasound scheduled for tomorrow. I am so bummed out right now. But the doctor said that if I didn't get my period then he had other methods as well! I see him on the 16th and will get my ultrasound results then and what else needs to be done when I go on next. I will keep you guys updated.

can u help me with the facebook page.cant find the page.how do i log in

Same boat here! Hi there, been diagnosed with primary amenorrhea since the age of 17. I'm now 27 going on 28 & Currently in a relationship looking to get married. Would love to know your story & if you were able to successfully conceive. My docs said all my scans for mri ultra sound and bone density came back fine they found follicles in my uterus & my uterus is slightly smaller than average. Is there something I should raise at my next appointment? Im still currently on the pill microgynon 20ed been on it on & off for the last 10 years. It has definitely boosted my estrogen & calcium levels. I just need a little hope!

Hi Everyone!

I haven't been very active in the group because I am not looking to get pregnant, therefore have no experience with what a lot of you are currently going through.

I do however have a question. I am thinking about going to see a naturo-path for a combination of herbs and acupuncture. The lady I talked to said that if you've never had a period before it's much harder to get it started then if you've been regular in the past. I am thinking of giving it a go but it's very expensive.

Has anyone tried this route?

OK. So I have some updates. I went on last Monday to get a sonohysterogram done (They insert a catheter into your uterus through the vagina to check the cavity of the uterus, if your fallopian tubes are open and if you're producing eggs!) It was one of my most painful experience ever but thank GOD my results came clear. My uterus cavity is normal and fallopian tubes are normal and I am producing eggs as well! But my cyst has grown a lot so they want me to go in for surgery to get it removed. I'm meeting my surgeon on April 08th and then I'll know exactly when the laproscopy will be done.

Since I didn't have my period for the first cycle of Provera, my doctor has increased the dosage and put me on the 2nd cycle. Lets see if I get bleeding this time!

How's everyone else doing?

Hopefu2bpreg,

Thanks for the update. I'm having that test on Thursday this week but i think its called Hysterosalpingogram (HSG) I have to take antibiotics the day from before my test date for 4 days. Did u have to do that? I'm so scared of the pain!!! Then if they are open, I start my injections. Whats your next step? It's good that you have got good results. I hope your surgery goes well!

Jen26,
Yeah, sonohysto and hysterosalpingogram are both the same. I did get that done last Monday. Don't worry about the pain! Just remember its all for you to be able to have a child. That's how I saw it! Not everybody feels the cramps. I actually had to take 2 Advils an hour before the procedure for the muscles to relax.

I'm so glad that U.S. finally has health care! Now, all you ladies that have been prolonging those doctor visit, GO SETUP AN APPOINTMENT!!

Hey hopeful2bpreg
I just had my HSG test and id have to say it was pretty uncomfortable but i wouldn't say it was the worst pain ever. Maybe because my tubes are open!! :) So now i just wait for my Dr. to call tomorrow to let me know if i can start my injections!

S.Jackson
I'm sooo sorry to hear this and it makes me really sad that you had to go through all that. I have never been abused and I have an older sister who also has PA. So I think it's genetics in my case. Man this is such a mystery! I feel like all of us girls have different stories. Stay strong!

Jen26, how are your injections coming along? I am going in for a lap. on May 04th to remove a hermatoid cyst. My doc will start me on fertility medicines after that!

They are going good. So far I've had about 18 injections. And just ordered for 10 more. I have 2 ultra sounds and blood work every week. My folics are growing but just kind of slow. I'm taking a Estradiol pill every night. I think it's for my uterus lining. I'm pretty much taking it day after day. I hope your surgery goes well , I can't wait to hear what are your doctors plans for you.

I'm so sorry to hear about you s.Jackson. I myself didn't go through any emotional/physical abuse as a child so I wouldn't know if that's caused it. I do however have one concern. My body is very soft and I don't have any muscles. I do ab work all the time, but never gain a muscle. I lift weights for biceps/triceps as well but nothing happens! Does anybody else have this problem? I always figured it was because I didn't have a normal bleeding cycle.

Hi Ladies
Im so sorry to hear about your childhood S.Jackson, I did not endure any abuse as a child, I think my PA could be genetic as my mum had a mild form of PA, she took a pill to conceive the first time and fortunately her condition repaired itself after she had her first child. I just wanted to pop in and encourage you all by letting you know that our first attempt at I.V.F was successful, we are five weeks pregnant. I am ecstatic and also still trying to take it all in, keep your chin up and know that you can reach your goal if you have faith! Wishing you all the very best!

Awesome Jenn!!! Was this the first thing you did to get pregnant? I will probably do I.V.F, if my injections don't work. It makes me more hopeful hearing that it worked for you.

This is GREAT news! This just made me so much more hopeful! Congratulations. I am so happy for you! I keep losing hope and now after reading about you it makes me so happy! Congratulations. Can't wait for December! :)

That's great! CONGRATS! My fiance and I are trying to conceive but my doctor keeps giving me birth control pills. Whats the point of birth control? Did you have to take birth control? And did you have to do anything else besides the I.V.F? I bet that I.V.F is really expensive.

S. Jackson,

Is your doctor putting you on the pill for just 12 or 14 days? I think she wants you to have a period, then she might have you do an H.S.G test to see if your fallopian tubes are open. That's what my doctor had me do.

So, I have an update on my injections, my doctor made me stop my injections to see if my follicles would grow on their own, but they actually ended up getting smaller :( so she's having me start the whole process over, I'm super bummed. so as of now, I'm back on the estrogen (its called Prometrium) for 12 days. I hope this works.

Hang in there Jen26. Thank god in this day in age there are treatments for our conditions! Can you imagine if we were in the 70's or earlier? Thank God for IVF and iui's and estrogen and progesterones. Hang in there my friend.

Hi
I had a sad childhood...bad infact! My dad being v strict used to beat me n me being scared of him lived my entire childhood like this...Still cnt forget all that.This could have led to my primary ammenorrhea as per your research abt child abuse.I hope u dnt mean sexual abuse?I was just beaten n kept in a lot of stress all my childhood...Dnt knw,if that led to this problem.

Hello sjackson,
I was beaten alot by my dad,being a strict military man till around my graduation.Being scared of him kept me in constant stress.Cnt forget it,even now being married for 3 years..My primary ammenorrhea could be coz of a stressful childhood since the age of 7,8