Listener Stories: Premature Ovarian Failure

~Nicole Damberg, R.N., diagnosed with POF in 2001

I want to extend my heart-felt gratitude and appreciation for being able to discuss Premature Ovarian Failure (POF) on Patient Power® Sunday, August 6th, with Andrew Schorr and Dr. Matthew L. Anderson, M.D., Ph.D. I feel I have turned my POF diagnosis challenge into an opportunity to help get information about it to people who need it, so that no woman will have to go several years before getting diagnosed, and that we can learn how to live and enjoy full lives as POFers.

Premature Ovarian Failure (POF) affects approximately 1-4% of the female population in the U.S., which, is about 250,000 to one million women. Normally, ovaries supply women with eggs until about 51 years old, which is approximately when menopause occurs. POF is not menopause in that the dysfunction of the ovaries, loss of eggs, or removal of the ovaries at a young age is not a normal occurrence.

From a patient perspective, this can be a difficult disease to be diagnosed with. However, I think that anytime we can arm ourselves with knowledge, learning everything there is to know about POF, it makes it easier to deal with having it. It is my vision that POF will someday soon become a familiar term both with the public, and among health care providers. This way, every young woman who is exhibiting the symptoms of POF (such as missed menstrual cycles, fatigue, hot flashes, and dry eyes) will know to ask for a diagnostic evaluation from her health care provider. The provider will then know which diagnostic tests—such as Follicle-Stimulating Hormone (FSH) level to perform. Because the health care provider will also be aware that POF increases a woman's risk for heart disease, osteoporosis, depression, hypothyroidism, and Addison's disease, once a patient has been given the POF diagnosis, she will be given the appropriate emotional and medical support, and referrals as needed.

Personal background: At the present time, I have been working as a registered nurse in an outpatient surgery clinic for almost a year now. I have been married for over seven years, and my husband and I are currently living child-free. After taking some time to process having my POF diagnosis, I reviewed and revised my life-goals and made the decision go back to school for my Bachelor of Science in Nursing after working for about ten years as a health educator. At the time of my diagnosis, it was shocking to hear that before my husband and I had even seriously discussed having biological children, the choice was taken away from us. Even scarier, was the potential health ramifications from and associated with having POF.

In 2001 at the age of 31, I was officially diagnosed with POF, after having symptoms for almost a decade. The last 5 years before getting diagnosed, my symptoms worsened. I rarely had menstrual cycles, and had hot-flashes—which kept increasing in severity and became life-disrupting. Since it took so long for me to get diagnosed, I had low bone-density levels, and very high cholesterol levels—both attributed to lack of adequate estrogen. (I'm happy to report that since working with a provider to treat my POF—going on hormone replacement therapy, taking calcium w/vitamin D supplements, eating healthfully, and getting regular exercise, my bone density is back up in the normal range and my cholesterol is now at a all-time low.)

Today, I attribute the resolution of accepting my POF diagnosis and striving to still live the best life that I can, to my optimistic and resilient attitude—the ability to see the glass as half-full. I believe that everything that happens to us in life is for a reason, and have faith that I will be a stronger person for having POF. I have made working on my health an on-going top priority, as I would like to become as physically, emotionally, mentally, and spiritually as healthy as I can be. Please know that you're worth the effort it takes to take good care of yourself, and that it is essential to give yourself the nurturance and sustenance your body, mind, emotions, spirit, and soul needs…

POF Resources/Website Links:

The International Premature Ovarian Support Association, 501 (c) 3 nonprofit http://www.pofsupport.org/ is a wonderful and respected resource about POF, and has links and info about POF support groups around the country. Even if you don't know anyone personally with POF, just clicking on this website can link you up to other POFers around the country (and even world too) via chats and message boards. I have found that it can help tremendously to know that you're not alone having POF.

National Institutes of Health POF Resources

"What's The Best Approach To Spontaneous Premature Ovarian Failure?", by Dr. Lawrence Nelson, Principal Investigator at NIH for POF research studies/clinical trials.

"Do I Have Premature Ovarian Failure?", is a wonderful resource for patients who have POF by the U.S. Department of Health and Human Services/National Institutes of Health.

International Premature Ovarian Failure Association (IPOFA) POF Conference: The Basics and Beyond. Info/registration is underway to be held October 27-28, 2006. A great opportunity to meet other POFers!

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