Answers to Commonly Asked Questions ( 20 - 29 )

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20. How often do pregnancies occur?

Just a few years ago a woman with Premature Ovarian Failure 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 8 percent of women.

21. 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 gonadotropin-releasing hormone (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. 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.

22. 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 are just as likely to conceive on BCPs as on HRT.

23. Is there any hope that in the future there will be a cure for the infertility?

There have been some recent advances. It is likely that in the near future freezing eggs will be done routinely. As you probably know, eggs are very fragile and until recently we haven't been able to freeze them like sperm. In order to survive the eggs had to be fertilized with sperm, making embryos.
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 or those with a family history of POF.

Again, in a few years, due to the advances in genetic research, we may know which gene(s) cause Premature Ovarian Failure. When the gene(s) is(are) discovered we will 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.

24. 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 Premature Ovarian Failure 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.

Forty-six women completed a questionnaire concerning their reaction to their diagnosis of Premature Ovarian Failure. The women were patients at The Lister Hospital in London or The Royal North Shore Hospital in Sydney, Australia Fertility and Endocrinology clinics. Forty per cent of the women who completed the questionnaire had children prior to their diagnoses. Fifty-four per cent 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 have a sense of urgency to do something immediately to become pregnant. And although most pregnancies do occur within 2 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.

25. 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 here.

Also, the IPOF Association can introduce you to women who've created their families through adoption and/or donor egg. Contact us!

26. I guess after my devastation (and I do mean devastation) about my chances for a baby I am still concerned about my health. Are there any problems I should be aware of?

Yes, several things. First, if an underlying health problem was discovered during your examination, such as thyroid disease, it needs to be corrected. Women with POF need to be attentive to their heart and bone health. To protect yourself it is generally recommended that women with POF take Hormone Replacement Therapy (HRT). You should take a combination of estrogen and progesterone. However, if you've had a hysterectomy you do not need to take progesterone. In that case, estrogen alone is taken (ERT).

27. Why should I be concerned about my bones?

Loss of estrogen plays a part in the more rapid decrease in bone density that is common after menopause. As women with POF we face many more years without the protective action of estrogen. Loss of bone density can lead to osteoporosis and fractures.

28. What can I do to protect my bones?

There are a number of things that you can do:

• Hormone Replacement Therapy (HRT)
• Get adequate calcium
• Weight-bearing and strength training exercise

More specifically:

Dietary changes that may be helpful:

Look at your intake of protein and decrease it if it's too high. Excessive protein in the diet can increase the loss of calcium through the urine. Common sources of protein are meats and poultry. In general, we (Americans) consume far more protein than we need. Women should consume 44 to 50 grams of protein per day. A lean hamburger patty contains about 26 grams of protein. One-half of a roasted chicken breast (without the skin) contains about 27 grams of protein. With the addition of protein found in vegetables, breads and other foods a diet with more than one serving of meat or poultry per day can easily exceed 50 grams of protein.

Drinks that contain caffeine (coffee, tea, or cola-based soft drinks) should be limited because excessive caffeine causes the body to lose calcium through the kidneys into the urine. A general recommendation is to limit your drinks with caffeine to no more than 2 per day and if you want more of those drinks to switch to decaffeinated ones.

Alcoholism is associated with osteoporosis. There are many reasons for the association between alcoholism and osteoporosis. Alcohol contains a lot of calories but they are "empty" calories, without nutritional value. Often alcohol is the "primary food" of people who abuse alcohol. So, instead of a nutritionally balanced diet they are deficient in a number of vitamins and minerals that can contribute to bone loss. There can be damage to the liver so that it may not be able to make a form of vitamin D, which is necessary for calcium absorption.

Lifestyle changes that may be helpful:

If you smoke, stop. If you don't smoke, don't start! Smoking limits the effectiveness of HRT. Estrogen levels in smokers taking HRT have been found to be significantly lower than in nonsmokers who use HRT.

Exercise protects against bone loss. Both weight-bearing and strength-training exercises should be included. Examples of good weight-bearing exercises are walking (at least 3 mph), running and jogging. Swimming and bicycling are not weight bearing exercises. Free weights or dumbbells, ankle and wrist weights, weight machines, and elastic tubing can be used in strength-training exercises.
It is important to know that exercise is site specific. If you want a strong spine you need to exercise the spine. If you want strong legs, you need to exercise your legs.

Nutrients that may be helpful:

You need 1000 mg of elemental calcium per day if you are taking HRT. If you're not taking HRT that amount increases to 1500 mg per day. You can get it through your diet or through a calcium supplement. If your plan is to get enough calcium through your diet, make sure you really are getting enough. It would be a good idea to keep a "diary" of all the foods you eat for 3 to 5 days. The days should include both weekdays and weekend days because it is likely that you eat differently on the weekend than during the week. If you are not getting enough dietary calcium, a supplement should be taken. The majority of supplements are either calcium carbonate or oyster-shell calcium. When you are determining the amount of calcium a supplement has, make sure you look at the amount of elemental calcium that it contains not just the total. In addition, the product should meet the United States Pharmacopoeia (USP) standards for disintegration and dissolution. If the information isn't available on the packaging you can call the manufacturer or do "the vinegar test." Vinegar test - place a calcium tablet in a glass of white vinegar (6 - 8 ounces) at room temperature. Stir it vigorously several times over 30 minutes. At the end of the 30 minutes the tablet should have disintegrated into fine particles. If it hasn't, it isn't the brand to use, as it will not be effectively absorbed in your stomach. The 1000-mg of elemental calcium cannot all be taken at one time. As your body can only absorb 600 mg of calcium at a time it needs to be divided over the space of the day. The calcium should be taken with a full glass (8 ounces) of water or juice in order for it to dissolve.

Vitamin D increases the absorption of calcium. The RDA for Vitamin D is 400 mg per day. An easy way to get Vitamin D is through 15 minutes of exposure to the sun (perhaps while you're outside walking or running!). Sunscreen can't be used during this exposure as it prevents the skin from making Vitamin D. One problem with getting Vitamin D from sun exposure is that in winter in some parts of the country the hours of sunlight are short. Only a few foods naturally contain Vitamin D. They include liver, fish and egg yolks. Some foods in the US, such as milk, are fortified with Vitamin D. If you don't get exposure to the sun nor the necessary Vitamin D through food sources a vitamin supplement can be taken. Check your calcium supplement because many calcium products have Vitamin D added to them.

Because other vitamins and minerals can enhance the absorption of calcium or help with bone synthesis it is often recommended that women with POF take a multivitamin plus mineral supplement every day. Any major brand can be used. You don't need a prescription. This way you know you have received 100% of the RDA for all the major vitamins and minerals.

29. If I have a bone-density study which one should I have done?

The DEXA (dual energy X-ray absorptiometry) is considered the "state of the art" technique. Have this one done if at all possible. However, there is very good research showing that virtually any of the other tests (like SPA, DPA and QCT) can be used to measure the various areas of the skeleton and predict a woman's future risk of osteoporosis.

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