Faces of POF Preview: Marrianne
Followed from Living with POF

Marrianne, forty-three, diagnosed at sixteen
 
I was diagnosed with primary ovarian failure at age sixteen.  I have lived with this diagnosis and have been on hormone replacement therapy for twenty-five years.  I hope that my story might help others who have been diagnosed with this rare form of premature ovarian failure.

I grew up as many girls did, looking forward to the time when I would be a mother to my own children.  I would pretend to be pregnant with a pillow or dolly under my shirt.  I also grew up in an atmosphere where marrying, being a mother, and raising children was a large part of who I would be.  This was reinforced by my religious community.  My parents raised me as early as age six with information about where babies came from and how they developed in a woman. As I grew older I learned about my body maturation.  In seventh grade, I looked forward to the day I would have my first period along with my friends.

Over time there became a marked difference between my peers and me in our physical sexual development.  I had a “fat pad” on my stomach region and because my breasts were so undeveloped, I was teased and taunted by others.  They claimed I was pregnant; ironically an experience I would never have.  I was very naive and very virginal.

Late in my fourteenth year my wise mother became concerned about my lack of maturation and delayed menstruation, and took me to my pediatrician.  The doctor discounted my mother’s concerns, saying I was just “a late bloomer,” but my mother couldn’t understand how I began enough breast development to wear a training bra and then at age twelve everything stopped.  I did not have any signs of appropriate body hair or spotting.  Mom decided to get a second opinion.  After one thorough exam by another well-recommended doctor, I was immediately sent to the pediatric endocrine clinic at Johns Hopkins Hospital in Baltimore, Maryland, not far from our home.  I will forever be grateful for my mother’s persistence.

After many examinations and tests, it was determined that I needed hormone replacement therapy.  My parents worried over this decision, but I’m happy to say they chose to start.  They worried about the effect the medication would have on me, especially taking it at such a young age.  My FSH levels were over 1,000 and I had infantile development.  My bone age had a two-year lag, even though my chromosomes tested normal.  I didn’t realize it at the time but being on hormone replacement therapy was vital to my physical womanly development and a part of my sexual happiness in marriage.  The doctors started me out on very low doses and gradually increased the amount, monitoring my development.  I have now been on them nearly twenty-five years.

My sister, five years younger than I, started developing early and had her first period before me.  She was less prepared for it, because I was no example to her.  I had mixed emotions about her being first.  I was a bit jealous, but I also had a tremendous sense of relief, feeling that she would be normal and wouldn’t need to endure what I was experiencing.

In my sixteenth year I was treated at the gynecology clinic at Johns Hopkins.  It was then that I heard of my diagnosis.  The doctor indicated to my mother in my presence that I had an extremely rare condition called primary amenorrhea, also known as primary ovarian failure with unknown origin.  As he explained my diagnosis to her, a wave of shock hit me.  I understood enough to realize that something was seriously wrong.  I piped us and asked, “Are you saying that I won’t be able to have children?”

He told me it was unlikely, and that if I wanted to have children I would have to adopt them.  He said that my body most likely did not have sufficient eggs in my ovaries or at least didn’t have enough “good” ones, to conceive.  They could not find a reason for this failure.  Since a woman is born with all the eggs she will ever have, the doctor said conception was highly unlikely in my case.  However, they couldn’t be certain unless I had an ovarian biopsy.  The doctors were split about whether I should be biopsied or not.  My parents were more concerned about how this blow would affect me psychologically than about my reproductive future, so I was never biopsied.  After hearing about my diagnosis, tears welled up in my eyes, and anything else the doctor may have said after that eluded me.

After my appointment, I spent the next thirty minutes riding home in the car playing the doctor’s words over and over in my mind.  I was already not like other girls and now I was being told that I would not be like other women either.  Was this for real?  When I got home I asked Mom to tell me again what the doctor had said.  I needed to hear it from her lips, too.  Then I went into my bedroom and cried.

As I began sharing my POF diagnosis with a few close friends, they had a difficult time understanding how my just being female wouldn’t make it possible.  “You’ll have children,” they would say in consolation, and then they would just let it go as if my problem had been solved.  I felt very alone with my diagnosis.  I knew someone who had adopted a baby after trying for seven years and then got pregnant.  This is what my friends expected for me.

When I started dating, I kept quiet about my POF until we became serious about possible marriage.  Some of my boyfriends just passed it off, as if it was no big deal, but the man I finally married took it seriously.  He responded in a caring, nurturing way, and shed a few tears with me.  At one point we did split up, but not over this.  While we were apart, he learned to love another woman’s child, but fortunately not the other woman. He returned to me knowing he could love a child other than his own flesh and blood.

He was in the military and, after marrying, we were stationed in Guam.  One time while there, all the wives on our street and the street behind us were pregnant at the same time.  It was a standing joke that it was “ in the water,” and I wasn’t drinking enough.  I was having a hard enough time dealing with all the new birth announcements from friends back home, but this was too much.  To make matters worse, I missed my husband terribly while he was deployed and was truly alone dealing with this.  I came to a breaking point when my close friend on my street had her baby.  I wanted to be happy for her, but I was too jealous.  When I held the baby, I had sweet feelings, but when I went home empty handed to an empty, childless home, it was more than I could bear.  I fell to my knees and prayed to God for comfort and help in dealing with this cross I had to bear.  Feelings of comfort poured over me as I prayed and cried.

After two years of marriage, I inquired about adoption through our church’s social service program.  We would be returning to the states and would be perfect candidates for adoption.  Three months later, my husband was in a military air accident that took his life and our opportunity to have a family.

After being widowed for four years, I met and married my current husband.  He already had two teenage boys.  To stave off possible resentment, I agreed before we married that I would not “parent” them.  I kept my word, but it was hard for me to figure out just how to fit in the family.  I wanted to be more than just friends.  Over time I have grown to feel like family, and my stepsons have accepted me as such, for which I am grateful.  I wanted to be a mom and feel more like a mom, so my husband and I pursued adoption for over ten years without success.  When grandchildren came along, I wondered again how I would fit in.  We were fortunate enough to live close by, allowing me to bond with them.

After the second grandchild came, my daughter-in-law asked me if I felt like the children’s grandmother.  She hoped that I did, because I had given a grandmother’s love to them.  For a long time I felt love as family, but I felt more like a close aunt.  I was able to make a greater transition to Grandma because I had been acknowledged as such.  That acknowledgment meant so very much to me.  Being a grandmother at forty is helping me make the transition of not having children of my own.  I have been able to care for my grandchildren in many aspects, from infancy on up.  I am grateful that I did not allow the roller coaster ride of adoption or POF to get in the way of loving the family I am blessed to be a part of.  Though I have not experienced every aspect, I have been able to share and grow in the roles I play in my family members’ lives.  I have had more regular, ordinary days living with POF than not.  I have found it important to accept whatever grief or pain comes up.  I usually journal my feelings or talk about them with a close friend.  For various reasons, hi-tech considerations, such as in vitro fertilization, were not options for us.  The doctor’s easy answer of adoption, which we pursued, was not so easy for us.  After trying numerous approaches for over ten years, we felt it was time to stop.  Many doors closed to us for various reasons not in our control.  It is critical to start these procedures as early as possible.  I know many have had wonderful experiences, but as with everything, there are no guarantees.

Not working on having a child is still new to me.  I still get twinges of disappointment and discomfort when I see other pregnant women, or when I see mothers holding their infants.  I have felt less lonely in my situation as I have visited the POF support board on the Internet.  I appreciate the opportunity of connection, learning, and helping others more like myself.

I am learning to add a little bit more of what I love doing, still giving and sharing with others to fill my life.  I have many questions to ask God when I leave this world. Until then, I choose to keep going and doing the best I can.