Do I really have POF? Is the doctor right?

[dancinchick23]

I am just 15 years old, Ill be turning 16 in February of 2009. I have yet to get my first period, but I do have signs of puberty. I have small breasts (34A), pubic and underarm hair, I have got occasional discharge as well. I get occasional acne, however I am very persistant with my face care.

Lets scroll back to last June..
I went for my yearly checkup with my doctor. Just on the way out of the appointment I briefly mentioned I hadn't gotten my period yet. She didn't really think much of it, and actually mentioned that she thought I was fine. I had recently grown close to 3 inches in the past year, which she thought could be a sign it was on its way. However, just to be safe she booked me to get an ultrasound done "just to make sure everything was there".
Well, I went for the ultrasound, and the doctor got the results back. She then wanted me to go get an MRI scan done. I went and got that done, they really only mentioned that my uterus was small, which was likely because I had not gotten my period yet. She then wanted me to go get some blood work done. I did that, and she wanted me to go see a Adolescent Gynocologist.
I went to see the AG in October. She completed a quick exam, as well as asked me several questions, and reviewed the results.
She told me that she thought there was something possibly wrong with my ovaries, since my FSH was high, and my estrogen was low.. she put it into words like "the FSH is yelling at the ovaries, but they are not responding". She also said that I would likely not be able to have kids, without getting some help. I was very upset by this news, however she did not tell me what it was called or anything. Instead she wanted me to go get another MRI scan, and she sent them specific instructions to look at the ovaries, as well as she sent me to do some more blood work.
After completing them both.. during the month of November I noticed some visable changes.. my breasts seemed to be a little larger, I noticed a lot more pubic and underarm hair as well. However the second blood test was taken before I noticed these changes.
I went back to the AG just last week.
She had gotten all of the results, and she told me she thought I had POF. I was quite confused, I did not know what it was. I did some research before the second visit with her.. and I thought I just was a late bloomer.. that it would eventually come. Every question I asked her.. she didn't really answer. I asked her how positive she was that it was POF, she didn't answer.
What struck me the most was how insensitive she was. She kind of treated this diagnosis as if it was another day at work, no big deal, who cares. I am really disapointed with the doctor herself. She told me to write down questions, but they aren't being answered?

She then prescribed me on like a 0.25 tablet of Estrace (Estrogen) she said I would likely be on the estrogen for a year "to finish puberty", and then she would put me on birth control until I am 50. She said if I wanted to, after the year I could come off of the estrogen, and then wait a few months to see if I could get periods on my own. When I asked if I had any eggs, it was kind of like a "uhhh I don't know" kind of answer. She said my uterus was capable of holding a child however. But she said I would need a donor egg likely. Luckily for me, I have a twin sister.

What im trying to understand is..
Is she right? Do I really have POF?
Will the estrogen heal me, and make me capable of getting my own periods?
Should I trust this doctor, even after me and my mom didn't get a good feeling from her?
Should I get a second opinion?
Is she saying I have hope? Or giving me the wrong impression?

I would really like to get help. My mom said she would do anything for me to make me able to have a child when I get older.

Could I just be a late bloomer?
Would the estrogen have harmed this fact?

I need answers from people that have had it happen to them.
Not a doctor who doesn't seem to really care.

Thanks!

[Montygat]

Dancin: If you get a chance, why don't you hop over to the high FSH board? Most of us are older than you, but we may have answers to some questions that you have. That board is a lot more active than this one.

Many of us know how shocking it is to hear such a diagnosis. And it sounds like you may need to see some more specialists and get some really specialized testing before ANY conclusions are reached. For instance, have they done karotype testing (this is a blood test where they take a look at your chromosomes to see if there are any abnormalities there)? Also, have they tested your thyroid? Thyroid problems are NOTORIOUS for throwing your hormonal balance WAY off balance.

You are too young to receive such a FINAL diagnosis. You may need to see a Endocrinologist (someone who studies the endocrine system) and/ or also a Reproductive Endocrinologist, who is doctor that SPECIALIZES in how the endocrine system affects fertility. They are also known as fertility doctors. And I suspect you'll need quite a few more tests to rule other things out. For instance, did you know your body can create ovarian antibodies, meaning that your immune system sets off a response to sort of attack reproductive hormones, etc?

BTW, how high was your FSH? And do you know what bloodwork you got done? What did it test for?

I invite you to hop over to the high FSH board and start a thread. There's lots of support there and while you need to listen to your doctors, we can help you know what questions to ask because many of us have been through similar situations.

Take care of yourself. It sounds like your mom is great and very supportive. Lean on your support system. And some of us on the board have had to go the donor egg route, which is a very very wonderful option for many people. Thirty years ago, you never would have had that option. The great thing is that you have so many options nowadays and YOU ARE SO YOUNG. It's important to be realistic, but also important to have hope.

I wish you all the best. Have a great holiday, and when you get a chance, visit us over on the high FSH board!

[Montygat]

BTW- Small breasts is not a sign of POF. I've been menstruating since I was 11 (yikes) and my b00bies are 36A- that was before my pregnancy (which I was able to achieve with my own eggs). They've gotten a little bigger, but I still don't think I could get anything cool at Victoria's Secret

[heatherNmatt]

i see how you feel EXACTLY as i am young too,
(20) = my situation was completely different though starting at age 14, talk to your parents about getting a second option you ARE VERY young as i did not have that option it might be other cases! not just POF! so dont get soo doscouraged i understand if you do!! i completely agree with what you said about your dr just treating it as another day at work basically.. you are going to find that ALOT i wish it wasnt true but unfortunately IT IS ! if you do not mind what was your FSH level did she tell you? and what was your estrogen level? and im NOT trying to tell you against drs orders AT ALL but talk to the drs. see if theres another option besides BC because drs seem to take that as a (quick fix) so they dont have to try anything else for while. you have alot of options take every one you can and i wish you ALL the luck in the WORLD and hope things get better!

[dancinchick23]

Thank you for your help,
She never told me what my estrogen and fsh levels were.
She mentioned that the estrogen level was like someone who was in early puberty, or pre-pubesent.

Heather,
were you diagnosed with POF at 14?
what was your situation like?

I am starting to think getting a second opinion from a doctor I like is a good idea. I keep hearing it is more than important to like and respect your doctor. Because he/she could be the difference between having a child, and not when I am older.

[heatherNmatt]

ok REQUEST IT~ she cannot refuse your results to you! acctually for testing like that (atleast here) they are to mail you a copy or parents if underage!I was Not diagnosed with POF at 14 i had problems since then and was given a run around untill now 20 yrs old at from age 9-12 i have had periods every other week all drs ignored it untill later when i was put on BC at 14 from 14 to 16 i was on it( so they ignore the problem) and then AFTER i got NO periods my Estrogen is now below 20( VERY low) and my fsh is at 103( very high) .YOUR QUOTE: "I am starting to think getting a second opinion from a doctor I like is a good idea. I keep hearing it is more than important to like and respect your doctor. Because he/she could be the difference between having a child, and not when I am older." yes is true ! BUT they also have to respect there patients a SECOND opinion is NOT disrespect! i made that mistake being younger of NOT getting a second opinion etc because mine could have been turned around for a short while because my hormone levels went to normal for 3 years BUT i stayed with the SAME dr who chose to give me NO information etc,. i sudgest keep as many drs as you can and GET as MANY opinions as you can! none of what is going on with your body or EVER will is YOUR fault, you are doing the right thing! i hope that all goes well for you and you too do NOT have to bear the pain of being a young women with POF! i also have a post in the pof boards one above yours i believe its titled "POF and how it has effected MY life at a Young age (20) " and you may read my story there :-)

[Montygat]

I agree. Don't let a doc put you on BCPs (birth control pills) simply to regulate you. It makes me SOOOO freaking angry. I was on BCPs since I was 19. My situation was a little different. I was always very regular but developed very painful periods. Of course, they put me on the BCPs and never really investigated why I had painful periods. Throughout the years, if I had breakthrough bleeding, they'd just change the pill. When I went off of them at 33, I was regular again, but then by 34 I was diagnosed with diminished ovarian reserve/ POF.

My point being that you need to find out the UNDERLYING cause of whatever is causing your symptoms, ie irregular periods. Docs just poo poo us by saying things like, "Irregular periods are very common." "Painful periods are common." The BCPs don't CAUSE the problems, but they can HIDE some of the symptoms you would otherwise have that would alert you to a problem.

Best of luck to you.