POF and how it has effected MY life at a Young age (20)

[heatherNmatt]

This is my story...

it all started when i was 14, my periods became irregular( i have had menses since 9)i have family history of them starting eairly so they took no action at 9.
the Drs brushed it off as i was young they needed to become regular, i mustered up the courage and went to an OB, that young i wanted NO ONE looking at my female parts ESECIALLY a male I refused a pap etc, got an ultra sound blood work all came back fine,was put on birthcontrol to REGULATE my periods worked WONDERFUL..... or so i thought at the age of 16 (2006) i was at work, when i hit me like a TON of bricks...... ive been off BC for 3 months....and NO sign of my menses! imediately i FREAKED... i was with my FIRST boyfriend at that time.... i bought every pregnancy test in sight when i got off work (No joke i seriously blew my check on pregnancy tests!!!) lol, (boyfriend then left so i was dealing with two things at once!!) they all came out negative...so i sat and waited as time went on, i called my Family Dr imedialy got in got a pregnancy test there (came back unknown) again the panic HOW DOES THIS HAPPEN?? i cryed and cryed! went and got blood work, it was negative i was relieved..... but didnt know what i was in for... knowing what know now i feel guitly for feeling relieved!... but i was younger immature and didnt know much....i went and got a MRI and found out i had a pituitary microadenoma....being that young ... not knowing what that was thought OMG im DYING! well NO not in the least bit.. found out it was 3mm and NOT functioning, non-cancerous got sent to drs upon drs specialist upon specialist, so depressed i couldnt eat sleep funtion ended up having to leave my job by this time its summer of 07 i finally got into an endocine specialist in june of 2007 I was relieved maybe ill have some answers (then was when i met my now husband) as we went to all these appointments it mde the depression WORSE because i again got no answers i went though blood work every week, my hormones shows OK then no big worrie (we can fix you) finally a sigh of releifor was it? i was put on Provera and i got withdraw bleeding was told all (non fixable things were out of the picture) after that and all blood work showd OK i got my menses in june(forced from provera) then got it again in july (not forced) then again in august!also not forced ......back to square one....when in SEPTEMBER NO MORE PERIODS! more blood work not pregnant, prolatin was high , estrogen was droping, oh here we go again....as i thought to myself, is this a joke by this time i was gaining wait how ? no one knows my diet never changed, as i really never ATE, started to eat healthy salads and such,MADE IT WORSE, got my tyroid checked and NOPE its fine....?......by 17 i went though more extensive testing( i cant remeber of what all )at this time my FSH was SLIGHTLY elevated, prolatin went to normal estrogen was still droping......got no answers from then untill NOW 2008 20 yrs old... no one could figure out what was causing it i got genetics cortisol blood cells pap after pap, blood work every week in this time was told about POF and told i could have it but HAD WITH DRAWL BLEEDING SO IT COULDNT BE THE CASE so young I BELIEVED IT !ETC finally in october of this year me and my husband WANTED A FAMILY! we wanted this so bad ...went to my OB (i was scared of at 16 lol) and got put on clomid,got copys of my hormones from the years prior etc, went started my pill EXCITED AS EVER! let me tell you it was an amazing feeling still though this process i didnt have my menses but i thought i was our of the clear ........NO! when i was due to "test" i got a ...POSITIVE! omg this couldnt be ! i called my husband at work we were excited! called the OB got an appointment...... then is when the down hill began YET AGAIN , i was at work when i went to the bathroom and there was brown and pink spottin.... hmm period? nope got a call on my break i must come on asap . they gave me a blood pregnancy test BAM NEGATIVE! and got my hormone testing back 5 ultrasounds later, i got your fsh is 103 and your estrogen is below 20 "heather ...Matt.... im SORRY" we cryed and cryed WHAT DOES THIS MEAN! Tell me this isnt right! tell me you can fix this. as we sat in the room crying asking questions hoping to get an answer! he said im sorry you have premature ovarian failure~! but please DO NOT give up! i will not let you i will work with you how ever i can! it didnt matter my life is ruioned~! ill never have a family etc, i was sent to a fertility specialist i later had to cancell because good lord they wanted all my money and major organs to see me ONE TIME! seriously 500.00 up front just to bascially walk in the place 2-300.00 for tested not counting anything else! ok well lets start saving!.. we were conviced we wanted this!...and then the ultra sounds came back.... heather you must see an on call ob, on glendale ave, she has to do testing, well wait, what for? she will expain everything i cannot give you information over the phone its against privacy. ok i hung up drove over there waited finally i seen her, " you have uterine fibroids , that might have causes the pregnancy test to go crazy ... "so you mean i could be pregnant? .. no thats what caused the pain,and the spotting, the ultra sound said its only tiny maybe 2mm bit very small but after exam i felt somtime atleast the size of a half dollar!" WHAT? so went from there got ANOTHER pregnancy test i almost REFUSED TO TAKE! came back negative DUH! put on antibiotics, pain was gone, but spotting still occurs EVEY MONTH since i wasput on clomid "around the same time every month" i got back to the dr, and get another "heather we not sure whats causing it blood work says i cant be period, we do not know if you have eggs left! and thats where the hurt started yet again 100 times worse, AND I GAVE UP! have not went back i want no more blood work as i sit and watch friends and family members get pregnant and call it an accident have there children and while i get invited to diaper partys and baby showers etc. how can i manage, it was then i got put on paxil, i started having anxiety attacts so bad i could not breath i was upped the doage and im coping better now! but still deal EVERY day with this roller coaster ride , im not sure if it will ever surpass or if i will get better, come to terms of acceptence or what have you but what i can say, i hope one day i hold my miracle baby, i hope one day, people are better educated about infertility i hope if there will to teach SEX ED they also give information about infertility, insurance compantys STOP thinking infertility IS NOT A PROBLEM! i wish this on no one! i felt alone, i didnt even feel like a WOMAN! and somtimes i still dont im going to menopause at 20??? my grandma is going though this for crying out loud theres days where i dont think about it or try not to and theres days,,,,,,,,, i cant help it! im on this board not to get sympathy, or IM SORRYS im on here because i realize im not alone and i want the best for every woman going though this as i know how hard it is reguarless of my age~! being young middle age or old! it all hurts the same! as people tell me im young and try to play dr say things that cut so deep and yet they dont realize why and my favorite one is " oh your still young it will have just save your money and adopt! EXCUSE ME! hello... i have no problem adopting .... i know im young! i wish people not in this situation UNDERSTOOD more! unfortunately they do not. i wish each and every one of you the BEST and hope you soon too have your miracle babys!im on a mission ... i know god has a plan for EACH of us and it is NOT our fault! but soon we will know what the reason behind it is but untill then i would LOVE to hear from EACH of you! fertile and infetile young or not we all share somthing in common! we all women trying to reach our dream of a family!
thank you and god bless
-heather!

*Update*

Hello everyone its been awhile since I have been on. I have had alot going on thankfully things are running smoothly now.I have recently Changed Endocrine's (I do not have a RE unless there all the same just a "basic" endo is what I have lol) Anywho, I know my fsh has went down to 70 Not good yes I know but compared to 105.3 I found myself happy about that. He is trying to put me on Birthcontrol to get my periods back he says because im so young my body needs it etc. Now im really hesistant on the Birthcontrol I need advice about that one my estrogen level is still really low i cannot remember the level it is at.I Indeed Finally got a 100% diagnosis wich is now permantly in my file of Primary ovarian failure It sucks but atleast I wont be on the rollar coaster ride I was before. With Heres your "diagnosis" and then take it back 2mths later. Oh and the last endocrine I seen had a written statement in my file saying he thought I had Turnors Mosiac but wasnt "sure" Ive never heard of that Anyone know? Besides that nothing else is new that i can remember besides Everyone including my MOM is pregnant again My mom just had a baby 8 months ago and is pregnant again, My sister is pregnant again (her 1st son is now 3) and my cousin is pregnant along with a close friend of mine. Oh the joyous rollar coaster rides of life :-). I hope all is well with everyone else Oh and Happy Belated Easter Everyone!

[CrystalAZ]

(child ment)

Welcome to FT. I wish you didn't need it.

IF stinks no matter how old you are.

BUT - there are also options no matter how old you are.

Fortunately for you, time is on your side. I agree with you about insurance companies... it really sucks that they don't see IF as a disease. They will gladly pay for birth control, and in some cases, even ABORTION, but do nothing for ladies who want to be mothers and can't.

I am 40, and I don't have POF. However, my ovaries are so messed up from a previous surgery that there is no way for the doctors to get to my eggs. So I had a child with the help of donor eggs. I am SOOOO happy that I had that choice available to me.

And yes - it was REALLY expensive. About $22K. But people think nothing of spending that on a car... so...

Like I said, you have time on your side. I WOULD start saving money. For adoption? Maybe. For IVF? Perhaps. For another treatment or answer? Could be. Mostly just so you have all options open to you. Or if you get a miracle, it will buy a lot of diapers. LOL.

And keep trying... there are so many ladies here who thought they couldn't get pg and all of a sudden it happened. I know that is just my stupid optimistic hope talking, but I do hope it for you.

I don't know what you believe, but I am a strong believer that God will give you the child you are meant to have, when you are meant to have it. That knowledge does NOT help when you are childless and pining away to be a mother. Believe me, I have been there... but looking back from the other side, I can see that every hurt I went through, every hardship, every step down a path I did not want to travel, every tear I shed... they all led me to exactly where I am supposed to be, and led me to a child I would not have had if I had given up or had refused to try something different than the dream I had in my heart of the perfect conception, the perfect birth...

Keep your heart open and keep trying. Don't give up. If you want this more than anything in the world, PROVE it - with your determination, your actions, and unfortunately, your dollars.

There are companies with insurance coverage for fertility treatments by the way - there is a board on FT under INFERTILITY.

I hope your baby finds you soon...

Crystal

[heatherNmatt]

First off Thank you very much for the reply,im glad you can see where im coming from with alot of what I talked about,and i completely understand EVERYTHING you said, BUT, with the phrase "i have time on my side (refering to my age) i tend to take that with a grain of salt and heres why. 1) yes im young and i can adopt or ave up for IVF etc,2) BUT not matter how young i am there is no gaurantee i can concieve or carry that child,etc i do understand for the older women though, that you have a "timelimit" basically.But honestly WE ALL have time limits, and most of wich CANNOT afford this, and NEVER know HOW we will hence my self so i can star saving now, but with the cost, we dont know if we will ever be able to afford it , and thats SAD! it really is, God bless you! thank you very much for replying to my post. :-)

[CrystalAZ]

I know how annoying it must be to hear "You have time on your side".

But it's true.

How FAR IF treatments have come in just the last few years. Who knows what will be discovered in the next few years. Who knows what will happen with insurance companies and IF coverage. Who knows what will happen with your financial situation. Who knows what will happen with your body.

Anyway, my words are not meant to diminish your pain. Wanting something so precious and not being able to get it hurts - no matter your age, no matter your situation. And it hurts to see those around you having children easily (especially when they don't appreciate them!) no matter if you are 20 or 30 or 40 or 50.

IF just sucks all the way around, for all of us going through it.

I do hope you find your way to being a Mommy...

Crystal

[heatherNmatt]

yet again I appreciate your response, but irregurless i do NOT have time on my side this is why,: I might be 20, my body IS IN MENOPAUSE yes i can save all well and good, but all the talk ( as ive heard it a million times LOL) about medical envancements etc, the hoping on the WHAT ifs and CANNOT do that, you cant go and hope on years and months from now because no one has that day Gauranteed! you have to live in TODAY! theres nothing going to change with my body what is done is done theres no medications no treatments etc i can do to fix unlike OTHER infertility (as im sure this isnt the only one you cannot "fix" but its one of them) i am stuck to live with this and know my body is different i do NOT have menses They dont think i have ANY eggs left im in menopause at the ripe old age of 20. I AM saving, i cant exactly for what as in medical because as you said it always changes and cost always goes up sucess rates change etc, but i can say im saving because one day what ever it costs i WILL have my little blessing!

[June07]

Hi I am going through the same thing. I am 24 and just diagnosed. We want a family! I want to move on something now, to begin the process of having children. I just don't know what is best for us. What are you looking into doing, egg donor?

[June07]

Hi Heather,

I just read your first posting. I feel your pain! When I read your story it is very close to mine! How are you doing with everything? How did you handle all of this. I know about mine for 1 month now but have been waiting 1 year from ending bc for a pd. Now I know... I will wait forever. My hubby and I just are praying for answers, I just don't know what to look into. Egg donor is so expensive and the suc. rates aren't @ 100% either. I would love to hear more about your journey, maybe it will give me some hope?

Thanks,
Dana

[heatherNmatt]

Originally Posted by June07

Hi I am going through the same thing. I am 24 and just diagnosed. We want a family! I want to move on something now, to begin the process of having children. I just don't know what is best for us. What are you looking into doing, egg donor?

i know how you feel! what are your levels? Im in the same boat i dont know whats best for us either,as far as a process of what were going to do im not sure,im saving right now because its all very expensive if you ever need somone to talk to that understands ill be here :-)

[heatherNmatt]

Originally Posted by June07

Hi Heather,

I just read your first posting. I feel your pain! When I read your story it is very close to mine! How are you doing with everything? How did you handle all of this. I know about mine for 1 month now but have been waiting 1 year from ending bc for a pd. Now I know... I will wait forever. My hubby and I just are praying for answers, I just don't know what to look into. Egg donor is so expensive and the suc. rates aren't @ 100% either. I would love to hear more about your journey, maybe it will give me some hope?

Thanks,
Dana

Very much so , i would Love Love Love to talk to you, atleast we can understand each other as the infertility is alot to bear at such a young age, if you want you may emal me at Sassy _ Angel 3202003 @ Yahoo . com with out the spaces :-)

[heatherNmatt]

Originally Posted by heatherNmatt

Very much so , i would Love Love Love to talk to you, atleast we can understand each other as the infertility is alot to bear at such a young age, if you want you may emal me at Sassy _ Angel 3202003 @ Yahoo . com with out the spaces :-)

i hope i didnt scare you with the last post, its just i dont know many people with this or that even understand!