The 5 W's You Need to Know About Premature Ovarian Failure

Source: gpointstudio

These quotes are from some of my patients:

The phone rang and someone at the clinic’s lab told me I had premature ovarian failure (POF). I passed out at my desk. How could they have told me that way?

I always worried about getting pregnant accidentally–now I wish I had!

Removing my ovaries and uterus saved my life, but it changed my life more than I thought it would. I should be happy I’m alive but it’s a different life for me without fertility.

I thought of getting pregnant as a ‘natural’ process. Now that I have early menopause, I’m knee-deep in meds, tests, and bills. And I’m only 28 years old. There’s nothing natural about this.

If I had known POF was possible, I would have frozen my eggs when I was 24 years old. I should have done research. My doctor should have tested me and warned me. I’m so angry at myself and my gynecologist.

My son is 2 years old and I was trying to have a second child when I found out I have POF. Even though I know I should feel lucky that I have a child already, and I do, all I can focus on is that I can’t have another with my own eggs.

It’s very depressing for me. I try to think positively and focus on other ways of parenting, but it’s still depressing.

I‘m used to taking control and fixing problems, but POF—it is what it is. My brain keeps trying to find the reason, but there isn’t any. It’s exhausting.

It’s like a terrible secret. I’m dating and I’m always thinking about telling or not telling. I’m sure there will be guys who will not be interested in me because of it. I can understand how they feel, but it feels personal, anyway.

I have worked with patients dealing with premature ovarian failure (POF) and early menopause (EM) for more than 25 years, and most tell me that the diagnosis was sudden and totally unexpected. In fact, a recent survey found 98 percent of respondents said they were unprepared.⁽¹⁾ Because I also research and write books about stress, I know that when your ability to predict what’s coming next goes down, stress goes up, which makes the shock of a POF and/or EM diagnosis even more difficult to handle.

If you are going through POF or EM, you understand this, and you are not alone. POF or EM is the cessation of ovarian function before age 40, which causes infertility and menopausal symptoms. This affects about one in every 100 women ages 30 to 39 years old.⁽²⁾

Here’s the “what, where, who, when, and why” of POF—news, information, and suggestions from those who have done research in this area, counseled patients with this condition, or have lived through the diagnosis, fallout, and adjustment.

The Five W’s of POF:

1. What should you expect?

Research studies find the feelings most frequently associated with receiving a POF diagnosis are confusion, sadness, anxiety, loss, emptiness, shock, anger, disbelief, and, sometimes, relief (to finally know what is wrong). You may feel all, some, other feelings, or none of these. There are no neat stages involved in reacting to, or recovering from, this diagnosis, but it is usually reported to affect self-esteem, body image, sense of psychological age and relationships with others.

2. Where you were told?

Your adjustment to the diagnosis may depend on how and where you were told about your POF diagnosis. If you were told by your physician, face to face, with a lot of time for discussion, explanation, information, and referral for support, you are in the minority. Most patients tell surveys that they were told by lab technicians, unknown callers from the fertility clinic, or by phone messages (40%) while they were at work. One study found that 71 percent of POF patients were unsatisfied with the way they were informed by their clinician, and 89 percent reported experiencing moderate to severe emotional distress at the time because the lack of information lowered their sense of control and, therefore, their ability to adjust to the diagnosis ^(1).

If your experience was similar, seek out information about both POF and alternative ways of getting pregnant (ovum donation) or parenting (adoption, fostering). Become your own expert and regain your sense of control.

3. Who can you turn to?

Women with POF or EM tell researchers that their main sources of emotional support were their mothers and their partners or husbands. Sadly, many say doctors seem to lack knowledge, sensitivity, and helpful suggestions for dealing with POF. Hopefully, this is changing. In the meantime, build your own support network. In general, seek out your friends who are good listeners, not good advice-givers or entertainers. Hearing yourself out loud often gives you the perspective you need.

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My patients always ask for a support group of women who have the same diagnosis. They point out that when these women say, “I understand," they know it’s true. If the fertility clinic you are working with doesn’t have resources for you, or you want to keep your diagnosis private for now, you can find other women with POF, informed physicians, and medical information online.

4. When does the healing start?

It may be weeks and you'll still be feeling as if the shock, disbelief or sadness is as great now as when you first learned of your POF problem. But we begin healing as soon as we are emotionally or psychologically hurt. To allow the process to continue, we have to make sure that we don’t add insult to injury by blaming ourselves, block moving forward by dwelling on the “would haves,” “could haves,” or “should haves,” or by generating anger instead of generating alternatives. Our emotions reflect our thoughts and we have more control over our thoughts than we think.

Choose to see your diagnosis as a challenge or an opportunity to parent in a new way–or perhaps a way new to your family or fantasy of family. Be open to the new view.

Deliberately remind yourself every day of the pleasures and positives in your life, especially the little ones. This will help keep your natural tranquilizing hormones high.

Don’t be afraid to laugh. Laughter is nature’s stress-relief mechanism and you can feel two emotions at the same time—like loss and laughter, so try to mix in the laughter.

If you are religious, practice acceptance for the parts of your life that you can’t predict or control, including POF.

5. Why me?

POF can be the result of chromosomal defects, toxins (particularly from chemotherapy), viruses, and autoimmune diseases, but the cause is usually unknown. That means you may not be able to get a final answer to the question “Why me?” You may find that you still ask the question from time to time, but the answer will gradually become less important and your plans and daily life will become more important.

One of my patients put it this way: “I have POF–I’m not POF”. She went on to be a mother of two through an anonymous ovum donation. “I’m sure some of my eggs had DNA from ancestors I never met. How different is this?!”

Another had her sister donate eggs so she would have her own gene pool for her child. Others have adopted. Some have decided to postpone their decisions. Some see how they feel planning not to have children. One has not decided and describes herself as being in pre-motherhood

So What’s Next?

A lot can help during the adjustment period. Most women —89% ⁽¹⁾—say that getting full and accurate information about POF helped them feel better emotionally. Unfortunately, most women found the information on their own.

Two out of three women with POF tell researchers that their spirituality was an important source of strength and coping ⁽²⁾. It helped them accept what they could not change—including their diagnosis. It also helped them refocus on their health, their lifestyle, and their blessings, they said, rather than their losses.

Support groups, in person or online, were reported helpful to 85 percent of the women who got involved, but only 20 percent did.

Finally, most women say that meeting another woman with POF made them feel better emotionally. if your physician can’t help you find others with EM or POF, try contacting national organizations like Resolve or reading postings in dedicated Internet sites. In the end, when I asked my patients and colleagues for some final thoughts for those who have diagnosed with EM or POF, they all agreed, don’t equate ovulation with gestation. If you want to parent and to build a family, there are many ways to do that, and you can start planning now. Don’t let POF or EM define you or bring you down. You are more resilient than you think, and you can work through this.