POI and Joy

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Sep 022010

New blog, new name but not so new diagnosis. POI (primary ovarian insufficiency), formerly and misguidedly known as POF (premature ovarian failure). What woman wants to hear FAILURE?! Ever! Specifically when speaking about her ovaries. You know, her baby eggs?! Those little follicles that, in the future, will bring her the most joy she has ever felt…..or will they? Ok, yes…children do bring joy. But what happens when the God given choice to conceive is ripped from your being? First thought is devastation in its worst form “WHAT? What happened? And HOW?”. Anger and confusion stops by for awhile. Then reality hits and grieve settles in (and usually stays for quite some time). UHG~ Here comes the pity party “Why me?!?!” And JOY?! How is that ever possible in this equation? Having my own children has been a childhood dream. And that dream started with nurturing my baby dolls as a little girl. Now it’s gone.

I have a wonderful life filled with joy and contentment. JOY is the goal and will be the foundation of this blog. First, I would like to define joy. Personally, I define it as the ‘feeling of happiness with contentment’. Webster defines it as ‘the emotion evoked by well-being, success or good fortune or by the prospect of possessing what one desires’. HA! Well, Mr. Webster clearly didn’t have POI. I desire a baby and don’t have one. How do I have so much joy? Oh goodness, it wasn’t easy to get here. But here is a little of how it played out.

About 20 years ago, I was 16 and still had not gotten my period. Strange. My twin sister had hers by now and all my girlfriends did too. Off to the doctor. After many tests, yep … nonfunctioning ovaries. And back then the docs barely offered me the diagnosis of POF, I was told MENOPAUSE! Really? I’m 16! So I went home and threw a tantrum (as any teenager would). All I knew then was my baby dolls were not going to come to life. The thought of any boyfriend wanting to date me was horrific to me. Isn’t that the point of dating? Finding a mating partner for the future? My life as I was going to live it just got a violent shove in a new direction.
I dated and a lot! I put the “menopause” on the back burner. I had other things to worry about. Growing up, parties, high school and studies, oh…all the joyful and fun times. And I was going to have them. I can honestly say I never had the denial stage. I guess being a child; I listened to the doctors and believed what they said. I just didn’t want it in my life right then. Unfortunately, the questions from others started. Hmmm, how am I going to explain this and not look like a freak? My first analogy I made up to make sense of this was a car. I was a car (and a nice one!). I had all my parts. I was even shiny and fun. But I just didn’t have any gasoline in it. It made sense to everyone including myself and it has stuck … 20 years later. Now, who would I find as a mate to help me simply “push” my car along the road of life?! Who would see the joy in ME? And he came … 15 years later!

My husband (oh dear, I teared up just writing husband). How wonderful. I don’t think I could have penciled a list to include all the wonderful he is. I hope to write about our love story someday, but for now we will stick with the joy in life with POI and how he is amazing with it. We both were barely in our 30’s when we married and kids were a desire for us. He deployed to Iraq shortly after the wedding so I thought this would be the perfect time to do more tests, meet with multiple Endocrinologists and start HRT (hormone replacement therapy). I would be all ready to conceive when he came home.

I thought just maybe, 15 years later, somehow my body had changed. Maybe because I had everything in order and we were ready. Time for kids. Was I wrong. Did I really want to start this all over again? The tests, emotions, the loss?! I love him and wanted to try. The very first thing he said to me on one of our long, long distance phone calls from Iraq was “I married YOU, not your ovaries”. HA! He is away at war and all he wanted to do is make me feel loved and protect me from heartache.

His return and first appointment with me to the IVF doctor, I was nervous. Donor egg was our only option. We knew this going in. Was it for us? Yes. There was no hesitation on either side. I never questioned the idea of our potential child not being mine and only his, biologically speaking. I really didn’t. Why fester over something that isn’t even an option? I know for sure I will never be a 6ft tall super model. I can’t add height the same way I can’t add eggs to my ovaries. Oh wait, I can add eggs!

But we didn’t jump right in. Time to put the POI pot on the front burner now! By now I had the diagnosis from many docs. But I wanted to know EVERYTHING! I put our first donor IVF cycle on hold and went to NIH (National Institute of Health) in Bethesda, MD. That’s where I met Dr. Lawrence Nelson. HE was going to give me the real low down. 4 days of even more tests. Oh goodie. What a great experience though. I felt, for the first time that I was surrounded by experts; and even met my first fellow POI in real life. She was my roommate at the hospital. I felt all alone in this diagnosis for 17 years. I didn’t even know other women had it! Well, I imagined there were others but I never heard about them.

We still have no babies. 2 donors, 3 IVF cycles (2 fresh, 1 frozen) and no live births. Yet I am so very happy. We really are happy. We may try again someday, but until then … we have childless back-up plans. Some of our back-up plans sound so amazing, we joke “let’s just bag that whole kids idea and do THAT?!”. What if we are to never become parents? That’s ok. It wasn’t always ok. But it is now.

Clearly there is so much more to talk about, more holes in even my story to fill … but the bottom line goes back to a good ‘ole fashion saying BE GRATEFUL FOR WHAT YOU HAVE AND WHO YOU ARE. That nice car you are. We are well, successful and have good fortune. And we always have the prospect of possessing what we desire. Hmm….maybe Mr. Webster does know what he’s talking about. I have JOY!

~Starr Vuchetich

Project Vital Sign

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Aug 162010

Project Vital Sign Project Vital Sign ® (www.ProjectVitalSign.org) is an effort to address critical issues that are vital to women’s health. Menstruation is a unique indicator of a woman’s overall emotional and physical health identifying issues linked to the menstrual cycle as well as misconceptions are a part of this campaign.  Project Vital Sign is comprised of:

  • Primary Ovarian Insufficiency (POI) (a.k.a. Premature Ovarian Failure Campaign (POF)): a grassroots effort committed to be the voice of women with POI .  The goals of the campaign are to 1) advocate at the federal  and  state level for legislation that will  increase research funds for POI, 2) increase awareness and  educate the general public, 3) increase awareness among healthcare providers because early diagnosis is critical to the health of a woman with POI, and 4)increase funding  to develop  programs and networks that help women cope with POI.
  • The Menstrual Cycle Is a Vital Sign ®: was established to communicate the role of menstruation as a unique indicator of a woman’s overall physical health in an attempt to prevent problems such as bone loss related to the absence of periods.

Study of Puberty Across the Nation (SPAN)

An initiative to examine physical, emotional, social changes of adolescent girls and boys during pubertal transition.

Prescriptions for Coping ®

An integrated approach to help patients cope with emotional issues that arise when given a life altering diagnosis.

Rachel’s List

Rachel’s List ® was started as demonstration project with the Northern Virginia Community College Medical Education Campus but it grew into a regular healthcare delivery service. It is a process that identifies disadvantaged women in the community who are in need of Pap smears and breast exams.  Rachel’s Well, Inc. partners with community organizations to provide outreach to women who otherwise might not seek out preventative health care services. If you live in Northern Virginia, have no health insurance, and have not had a Pap smear in the past 5 years, we would like to help you. For more information please email us at Info@RachelsWell.org or call 703 644 9084.

Letter from Senator Kennedy

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Aug 162010

On May 1, 2008, we received a great letter of support from Senator Ted Kennedy in response to our congressional efforts to increase research and public awareness.  Our congressional letter writing campaign is very important and we commend the women with POI and their families for telling their personal stories about how they are affected to congress.  The letters to congress were undoubtedly a critical element of the campaign in the months leading up to this response.

Click here to enlarge letter

Letter from Senator Kennedy May 2008

The Menstrual Cycle and Adolescent Health

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Aug 162010

Rachel’s Well is happy to announce the release of “The Menstrual Cycle and Adolescent Health.”  This is a volume created in collaboration with the New York Academy of Sciences.  Karima Hijane of Rachel’s Well was a contributing author as a POI advocate in this special edition.  The volume is filled with intriguing articles written by advocates, physicians and researchers like Dr. Paula Hillard (Board Member) and Dr. Lawence M. Nelson (Federal Liaison).  Many leaders in the area of the menstrual cycle and adolescent health contributed to this project.

Please click here to read more about this volume published in The Annals of the New York Academy of Sciences.

Book abstract:

“A group of basic scientists, clinicians, patient advocacy groups, and representatives from governmental agencies met at the National Institutes of Health with the long-term goal of getting the menstrual cycle accepted and understood as a marker of general health in adolescent girls and to define a related research agenda. This volume comprises the proceedings of this meeting.

Health issues linked to the menstrual cycle include the status of bone health, heart disease, and ovarian failure, as well as long-term fertility. A change in the menstrual cycle could be the first sign of a problem in general health.

Specific topics covered in the volume include the following: (1) normal processes of the adolescent menstrual cycle, including menarche, the psychology of puberty, and cultural perceptions and practices surrounding menarche; (2) disease processes and the adolescent menstrual cycle, including genetic mechanisms of amenorrhea, Turner syndrome, FMR1 premutation, galactosemia, disorders of sexual differentiation, congenital adrenal hyperplasia, chronic disease, chemotherapy, autoimmune oophoritis, premature ovarian failure, and polycystic ovary syndrome; (3) bridging normal and abnormal processes, including amenorrhea, dysmenorrhea, adolescent antecedents to adult reproductive disorders, bone health, and HRT in the adolescent; (4) modern dilemmas and the adolescent menstrual cycle, including developmental delay, obesity, exercise-induced amenorrhea, eating disorders, stress-induced amenorrhea, and amenorrhea induced by medications; (5) the synthesis of the volume consisting of a contribution on the transition to adulthood.”

Premature Ovarian Insufficiency

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Aug 162010

Karima Hijane could not believe what she was hearing: The obstetrician who for two years had insisted that her mystifying constellation of symptoms was the result of stress had discovered the real cause, imparting devastating news that would alter Hijane’s plans for her future.

On 08/19/2008, Sandra Boodman with the Washington Post published a story detailing Karima Hijane’s personal struggle with POI in the Medical Mysteries column.  This article is available in print and online.  Click here to view the story online.

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