Frequently Asked Questions

• Do women have normal fertility before developing POF?
• How often do pregnancies occur?
• What do I need to do to get pregnant?
• Can I use BCP instead of HRT?
• Is there any hope that in the future there will be a cure for the infertility?
• I am overwhelmed with the idea that I may never have a baby.
• Do you have any additional infertility resources?

Do women have normal fertility before developing POF?

Yes. In general, women with secondary amenorrhea have normal fertility before developing POF.
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How often do pregnancies occur?

Just a few years ago, a woman with POF would have been told that she had absolutely no chance of a pregnancy. Today we know that pregnancies occur after the diagnosis of POF in about eight percent of women.
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What do I need to do to get pregnant?

This is probably the worst aspect of this whole problem. Many different treatments have been tried but none has offered any hope of success. Use of GnRH, estradiol and corticosteroids (such as prednisone) haven’t proved to be effective. Neither Clomid (Clomiphene citrate) nor human menopausal gonadotropins (hMG) have shown to be effective in stimulating follicles to ovulate. This is because it is likely your body already is producing large quantities of FSH and LH in an effort to get your ovary to respond. Adding more hMG is unlikely to produce a reaction, as that is not where the problem lies. Recently a study using Danazol on the theory that it would improve follicle activity and induce ovulation was tried but it hasn’t shown any success either.

Generally, the women with POF who have ovulated and gotten pregnant have been taking HRT at the time of conception. However, it is likely that this is just a reporting issue. Since women are generally told they can’t get pregnant unless they’re on HRT, it is possible that if they’ve gotten pregnant without HRT they have been reluctant to tell their health care providers. It could also be that since most women with POF are on HRT, most women who become pregnant will be on HRT.
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Can I use BCP instead of HRT?

Yes, however BCPs contain far more estrogen than needed for replacement. Also, no estrogen is provided during the “placebo” week. Women with POF should be taking estrogen every day. Women with POF can conceive while on both BCPs and HRT. However, if you are trying to become pregnant with POF, it’s better to be on HRT than BCPs.
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Is there any hope that in the future there will be a cure for the infertility?

Infertility is treatable but not curable. With that said, there continues to be advances. It is likely that in the near future freezing eggs will be done routinely. As you probably know, eggs are very fragile and previously we weren’t able to freeze them like sperm. In order to survive, the eggs had to be fertilized with sperm to make embryos. A new technique called “Egg Vitrification” has been successful in freezing eggs with a very rapid freeze technique.

Unfortunately, this is not going to help the majority of women with POF. That is because POF generally takes women by surprise. It is unexpected. When freezing eggs becomes a routine practice it will benefit women undergoing chemotherapy, radiation therapy and those with a family history of POF. Someday, due to the advances in genetic research, we may know which gene(s) cause POF When the gene(s) is(are) discovered we would then be able to develop a test which will help women who have a family history of POF. It will identify which women in a family will be affected.
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I am overwhelmed with the idea that I may never have a baby.

For the majority of women the most devastating part of the diagnosis of POF is the loss of fertility. “Before I’ve even had a chance to make a decision about having children that choice has been taken away from me” is repeatedly stated.

46 women completed a questionnaire concerning their reaction to their diagnosis of POF. The women were patients at The Lister Hospital in London or The Royal North Shore Hospital in Sydney, Australia Fertility and Endocrinology clinics. 40 percent of the women who completed the questionnaire had children prior to their diagnoses. 54 percent of the women reported that loss of fertility was the most distressing aspect.

If you haven’t completed, or even started your family, this diagnosis can be especially upsetting. You may have a sense of urgency to do something immediately to become pregnant. Though most pregnancies do occur within two years of the diagnosis, pregnancies have been reported as long as 16 years after the diagnosis. You do need time to come to grips with the diagnosis. It is OK to give yourself time to grieve that your family may not be created as easily as you thought.
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When my doctor told me what the problem was, he immediately told me my options for a family were donor egg or adoption. I certainly wasn’t ready for that then! Now, I think we should at least look at all our options. Do you have any resources?

If you decide to look into donor egg or adoption, there are resources listed at the back of the booklet. Also, the POF Support Group can introduce you to women who’ve created their families through adoption and/or donor egg. Our addresses and phone numbers are listed at the end of the booklet.
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