Stellaluny's Story
July 2002

Share a brief summary about yourself, how POF changed your life.

POF is the set of eyeglasses I now see through... and it makes everything I DO have look brighter and better. I have a great marriage and a great husband who sees me not for the children I might give him, but for the wonderful woman that brightens his life. I also have a full appreciation of children as miracles! My husband and I will probably adopt in the next year or two, and I am glad that I will be able to look at that child in amazement, just so happy that God placed him/her in my life. I also have a stronger and better understanding of faith and its purpose. I realized that God isn't the big pie in the sky waiting for us to ask him to take away our hardships. He is there for us to lean on, be mad at, and talk to when times are good and bad. God is also there to remind me how important my life is, with POF! I have also realized that perception is everything. If I perceive that a life without biological children equals an unhappy life, then I will fulfill that expectation. If I perceive that I can be happy with the family God gives me, either through DE/IVF, adoption, or just a lifelong romance with my husband... I can be happy!

I truly believe that most people walk through life, viewing health and family as "rights" instead of gifts... never understanding how special those certain people and moments are. I know the difference, thanks to POF, and can walk through life with TRUE appreciation.

How did your health care provider tell you about your diagnosis?

I am now 26, but was diagnosed at the age of 17. I had the type of regular period all of my friends envied... 28 days exactly! My period had always been crampy, but in the year before my diagnosis, the cramps were particularly bad. I remember getting ready for school in the morning, and having to sit while I put on my make-up for fear I was going to fall over in pain, and b/c those little black dots started floating in front of my eyes (I now know I was "blacking out"). In any case, when my period didn't come in May of 1993, I was relieved! No pain, and my beach trip wouldn't be ruined! But, come June, July, and August, no period came either, and it never came again. My mother of course grilled me if I was pregnant (I was dating my now husband). I knew that couldn't be the case b/c I wasn't sexually active, so told her maybe it was time for my first gynecological exam. The gynecologist said I was stressed from auditions (I'm a violinist) and senior year worries, and placed me on provera to bring on a period. Once the last pill was gone, and no period had come, my gynecologist was great... he immediately referred me to one of the best reproductive endocrinologists in central Florida. I had to wait a couple of weeks for that appointment though, and my family was growing less and less patient with me. I was a moody mess! I snapped at my mother and stepfather, even friends sometimes, which really surprised me. I didn't know what was going on. I was pretty awful to my little sister at that point too (only 13 months difference between us). The RE also said he believed this all was stress related, but decided to draw blood anyway. Two weeks later, in December of 1993, the middle of my senior year, we got the news. The RE talked to my mother, told her I had entered menopause at an extremely young age, and told her I would never have a child of my own. While it was hard for me, it was especially hard for my mom... I remember trying to comfort her as she sobbed. I wasn't placed on BCPs for another month, and in that time, I remember crying over everything. I didn't know if I could trust my feelings... were they genuine, or was it the hormones? To be a teenager, already unsure of myself, and go through this was extremely tough.

Do you have any advice or tips for others?

As so many others have said, research research research! While getting diagnosed for some was difficult, for me, the most difficult part was finding a doctor after the diagnosis who would help me maintain my health and talk to me in some educated fashion about this disorder. Most doctors it seems, just want to talk about the fertility aspect of the diagnosis not going into the quality of life issues and other health risks that CAN be prevented if on the proper HRT/Diet/exercise. We can still have a great life if doctors will work with us to get the right HRT or BCP regimen for our unique bodies.

In addition, don't feel like once you've found a doctor, all you have to do is show up for your appointments, and the rest is up to him/her. Keep researching. They are finding out more and more about what we ladies need, and if you aren't up on it, you won't benefit from it. Think about it, most REs where I am from are still calling this thing premature menopause, so his/her knowledge of what further tests to run, the proper HRT, etc. are most likely from the ice ages too! With POF, chances are, your treatment will have more to do with what you bring to the doctor than what he/she can bring to the table.

How has your spouse, SO or confidant been helpful to you in dealing with POF.

YES! While he often doesn't know what to say when I've told him, "I want a baby," for the fifth time that hour, he is so great! He has shown me true love and that he is more concerned about having someone he can grow old and be happy with rather than good ovaries! He knows immediately when I am down, and is great at addressing the subject, and then distracting me so that my whole day doesn't end up poopy!

How does he or she deal with POF?

I don't think he thinks about it as dealing with POF as much as he thinks about how he can make me happy. He knows the infertility aspect of all this really gets me down sometimes and it is frustrating to him that he can't do something to the "fix" the situation. I help him to deal with it my keeping more of the "I want a baby" comments to myself... b/c I know he wants to fix it, and not being able to kills him. I fully realize that this is my body that’s failing, but it's his diagnosis too. Just b/c its happening to me doesn't give me the right to be the only emotional one, leaving him to listen and grieve quietly. He tends to focus on other things, like building me a trellis or fixing up our home... so that we can have a wonderful environment here, just for us... and hopefully for a little one when we decide the time is right to adopt.

Is there anything else you'd like to add?

Probaby the best thing that has happened to me since my POF diagnosis was my trip to the National Institutes of Health. I finally had all those tests done that needed to be done along with this diagnois! And, I learned so much about POF... and all for free! Having all the current information in front of me has really opened my eyes... I see exactly what the doctors see now, and have more realistic expectations about what my body can do and how my husband and I should progress toward our family. From that has come peace of mind and just an overall sense of calm! I have done my part for my body and have covered all the bases! That alone takes a burden off! I fully suggest NIH to any POFer.