The International Premature Ovarian Failure Association, Inc. (IPOFA) started in the Washington, DC area in March, 1995. Seven women responded to an advertisement in the local newspaper, The Washington Post, and met in an adult education classroom at a local school. The women ranged in age from 19 to 43 years of age. One woman had been diagnosed just a week before we met. Another had been diagnosed in 1984. The causes of Premature Ovarian Failure (POF) varied and included autoimmune disorders, genetics, post-chemotherapy for breast cancer, and Galactosemia.
Most of the women stated that they felt alone, as if they had been hiding a secret. In the words of more than one woman: “I felt like a freak,” and “no one else has been able to understand how I’m feeling because no one else I know has this disorder.” Finally, we were no longer struggling with this alone. At last, we had others with whom we could share our stories. It was a meeting of hope.
At that first meeting, and in subsequent ones, we have discussed how POF has affected our relationships with our spouses, friends and family, hormone replacement therapy, the feeling of being old before our time, the doctor/patient relationship, how to cope during holidays when family with children join us, how to go to that first baby shower for a friend after we’ve received our diagnosis and many other topics. We have shared information, gained a greater understanding of this disorder and discovered how little is really known about POF. Most importantly, as we have gained knowledge and have been able to share our stories, our ability to cope with this disorder has increased.
Since that first meeting, we have grown beyond the Washington, DC area. The November, 1995 issue of Marie Claire magazine included an article, “My Menopause Started at Age 25.” Our local support line phone number was included at the end of the article and we received over 120 telephone calls from across the country. Our group, which had been compiling materials about POF, put these articles together in a packet and sent them to the women who had contacted us. In addition, we asked women if they wanted to be included in our “share list.” We continue to grow today primarily through word-of-mouth, internet searches, physician referral and mentions in popular magazines and television news stories.
Through a grant from the Endocrine Nurses Society, we have been able to create this booklet. We hope that you find the information helpful. Our goal is to provide you with information so that you have a better understanding of POF. This in turn will give you the knowledge you need to make informed decisions about how to deal with this disorder.
