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Premature Ovarian Failure
a blog by Pamela Tsigdinos
I remember the first time I heard about the term Premature Ovarian Failure (POF). My first thought: what a downright cruel disease diagnosis for a woman who wants to have children. I’m in the endometriosis category myself but I’ve always felt a kinship with those combating POF.
That’s why I was happy to make the acquaintance of Catherine Corp, president of the International Premature Ovarian Failure Association (IPOFA). She was kind enough to answer a few questions leading up to the organization’s eighth conference in Houston on October 2-4.
Q. How prevalent is Premature Ovarian Failure?
- It affects about 1% of the female population under the age of 40.
Q. At what age is POF typically manifested?
- The average age of onset is about 27 years old! Often before women even think about having children. The dream is taken away before women really even start thinking about it. Even today with all we know it still takes about two years for a woman to get a proper diagnosis. She may go to three to seven health care providers before she finds out what is wrong. That is down from the seven to ten years it used to take.
Q. What are the symptoms?
- There are a range of symptoms and each woman is different. The most common symptom is irregular or absent menstrual cycles. Women also have hot flashes, night sweats, loss of sexual desire, vaginal dryness that can make intercourse painful, dry eyes, lack of sleep, and irritability. Wouldn't you be irritable if you were having night sweats that caused you to be up on and off all night and couldn't sleep?
Q. Is there a way to prevent it?
- No, and frequently the cause of POF is unknown.
Q. What are the biggest myths and challenges associated with Premature Ovarian Failure?
- The myths among some health care providers include these gems: "You can't be experiencing menopause. You're too young. You are just under a lot of stress. Relax and in another month or two your period will return. Stop exercising so much. I've never seen a young woman with premature menopause and you don't have it either."
There are also myths from both health care providers and family/friends that would have a woman believe that POF is only a fertility issue, that it has no impact on overall health or that ongoing health care related to POF for reasons other than family-building is unnecessary. Not true!
Then there are the challenges from those who deny there are losses involved with POF. This denies women the opportunity to talk about the perceived loss of youth and minimizes the infertility aspect. The reactions typically include: "What's the matter? You know what you have now. Be grateful they came up with a diagnosis. Count your blessings, you’re not going to die. So what, you can't have kids, you can always adopt."
That last one always seems so dismissive and exhibits a total lack of understanding.
Q. What can family and friends do to help women diagnosed with this condition?
- Listen to her! She needs to be able to talk openly about how the diagnosis is affecting her. Please don't minimize or dismiss her feelings. Ask what you can do for her. Maybe she'd like someone to make the phone calls to set up an appointment with a new doctor or she's overwhelmed with insurance questions and could use some help filling out forms. Be sensitive but don't cut her out of important information in your life.
It's not helpful to find out that your good friend is five months pregnant and she never told you because she was afraid of how you'd take it. It would be helpful to plan how to tell and where you tell her. In a crowded room with lots of other people rejoicing about the news isn't the way to go. Instead, plan a quiet time to talk. Most likely she'll tell you she's happy for you but sad for herself.
Also, please encourage her to put her health first. Women with POF require on-going medical care, including hormone replacement, in order to maintain a normal quality of life. Frequently, women get diagnosed with POF when trying to conceive. The quest for a child can become so consuming that women may end up minimizing their own health needs, or ignoring them completely. This can end up putting the woman at risk for several serious health issues, including osteoporosis.
One of my favorite things written about this is from the IPOFA book, Faces of POF. In the postscript we quote a woman who'd been asked, "What do you know now that you wish someone had told you when you were first diagnosed with POF?"
- "[Ask] me: What does it mean? How do you feel? Here is my shoulder if you need to cry, and here are my ears if you need to talk."
The IPOFA's mission is to provide community, support, and information to women with Premature Ovarian Failure (POF) and their loved ones; to increase public awareness and understanding of POF; and to work with health care professionals to better understand this condition.