Frequently Asked Questions

• How long should I take HRT?
• Why isn’t progesterone necessary if I’ve had a hysterectomy?
• My mother and I are both on HRT. Why does she take Premarin 0.625 mg and I take 1.25 mg?
• How should young women with POF replace the estrogen that their ovaries don’t supply to them?
• What is the difference between estrogen and estradiol?
• What about progesterone?
• What are the side effects of estrogen and progesterone?
• Should I take continuous or cyclical HRT?
• I had a blood clot. Should I take HRT?
• What can I do instead?
• I don’t hear much about testosterone. Should I take it?
• Why is there such hesitation about testosterone?
• What are the long-term risks of taking HRT?
• What kind of research about POF is the NIH doing?
• Is there a connection between POF and migraines?
• What if I have more questions?

How long should I take HRT?

Because women with POF face many more years than normal without estrogen it is recommended that they take HRT until age 51 and then make a “menopause” decision about continuing HRT.
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Why isn’t progesterone necessary if I’ve had a hysterectomy?

For women with a uterus, the combination of estrogen and progesterone is effective in preventing endometrial cancer. If you’ve had a hysterectomy, endometrial cancer isn’t a risk. In addition, we know that at least certain types of progestins can negate some of the cardiovascular benefits of estrogen so in general, women who’ve had a hysterectomy don’t take progestins. Recent research has shown that taking estrogen without a progestin (unopposed estrogen) can increase the odds of developing ovarian cancer as well as endometrial cancer. It is unknown how this information relates to women with POF, who may have a lower risk of ovarian cancer than the general population of women. However, even if you have had your uterus removed, if you still have ovaries, it may be advisable to take estrogen with progestin.
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My mother and I are both on HRT! Can you believe it? Why does she take Premarin 0.625 mg and I take 1.25 mg?

One of our members calls the HRT her “granny pills.” It is really hard to be taking this “medicine” at such a young age. Generally a higher dose is needed: to control the hot flashes and other symptoms, to provide the vagina with enough estrogen, and to compensate for the deprivation of estrogen at a time in life when the ovaries produce most of the body’s estrogen. Younger women also have more estrogen receptors. The levels of hormones that are produced by the body during the reproductive years are much higher than those given through HRT at the dose recommended for the “menopausal woman.” However, each woman is different. Your estrogen dosage should be related to your symptoms.
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How should young women with POF replace the estrogen that their ovaries don’t supply to them?

The National Institutes of Health (NIH) provided this information: “When the ovaries stop working in young women one could argue that the natural human hormone should be replaced just as natural human insulin can be replaced in people who have diabetes. It makes sense to try to replace exactly what the ovaries make and supply it in a way as similar to the way nature provides as possible. This means using the natural human hormone estradiol. This is the major hormone that human ovaries make. It also means giving the estradiol in a way that goes into the body through the veins (the normal human ovary doesn’t provide estradiol through the mouth, it provides estradiol by putting it into the ovarian vein). Well, you say, we obviously can’t give estradiol by putting it into the ovarian vein, now can we! True, but we can give it through veins in the skin by using a patch. This is what we recommend you do until we have better scientific information.”

Another benefit of the patch is that it releases estrogen continuously, rather than all at once like the tablet. This way the delivery of estrogen more closely resembles your body’s own estrogen production. However, not all women can use the patch. Some are allergic to the adhesive compound and some women don’t like the idea of “telling the world” they’re on HRT by wearing a patch. Still others find the form of dosage too strong and experience increased side effects. So don’t feel badly if a patch is not the ideal medication for you. The oral estrogens have worked effectively for years.
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What is the difference between estrogen and estradiol?

Estradiol is a type of estrogen. There are many different types of estrogen in the human body. Estradiol is the most powerful. If you receive your estrogen transdermally, it will remain as estradiol. However, if you take it orally, it will be converted through digestion to a different type of estrogen called estrone/estriol. We recommend you look at earlymenopause.com and look at their excellent list of different types of hormones that are available from different pharmaceutical companies, compounding pharmacies and over-the-counter. You can learn which type of HRT contains which types of estrogen and make a more informed choice about the type that is right for you.
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What about progesterone?

You asked about progesterone but I’m going to start off by giving you some information on the combination of estrogen and progesterone! We know that estrogen alone is the most effective way hormonally to increase the good lipids (HDL) and decrease the bad lipids (LDL). However, these positive effects of estrogen can be muted or counteracted by certain types of progestins. We use the word “progestin” rather than “progesterone” because the most popular medications in HRT are similar to, but not the same as, the progesterone the human body produces. It is necessary to take progesterone or a progestin to protect against uterine or ovarian cancer, unless you have had your uterus and ovaries removed.

One choice is micronized progesterone, which is chemically identical to the type of progesterone produced by the human body The findings of the PEPI (Postmenopausal Estrogen/Progesterone Intervention) Trial confirmed that the levels of the good lipids were highest in women taking estrogen alone but they were almost as high for women who took estrogen and a micronized form of the natural hormone progesterone.

The PEPI trial was a 3-year study of nearly 900 women on various forms of HRT. This was a study of postmenopausal women. Their ages ranged from 45 to 64. There is currently one large scale study of women with POF by the NIH but it is still on-going. One of the outcomes of this study was that potentially pre-cancerous lesions developed in one-third of the women with a uterus who only took estrogen! Also, the estrogen effect on the lipids is only one aspect of cardiovascular health. Look for more studies!

Micronized means finely ground. That it’s been broken down into very tiny particles. It allows for a steady, even absorption of the medication. Natural means many things to many people but here we mean chemically identical to the hormones produced in your body. It doesn’t mean that it’s an organic product like you’d find in a health food store. The dose used in the PEPI Trial was 200 mg of natural micronized progesterone for 12 days per month.

Until just a few years ago the only way to purchase micronized progesterone was through a compounding pharmacy. Micronized progesterone was sold as a bulk powder to pharmacies that specially prepare or “compound” the powder in capsules or tablets. Now you can have your doctor write a prescription and take it to your local pharmacy just as you do for your estrogen.
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What are the side effects of estrogen and progesterone?

Side effects of estrogen include breast tenderness, headache, blood clots, worsening of astigmatism, intolerance to contact lenses, nausea, vomiting, diarrhea, bloating, weight changes, acne, decreased absorption of folic acid and increased gallstones. Side effects of progesterone include headache, irritability, depression, nausea, vomiting and increased acne. Several women state that they have fewer side effects on micronized progesterone than other types of progestin. Micronized progesterone should be taken at night because it often causes sleepiness.
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Should I take continuous or cyclical HRT?

Generally, cyclical HRT is recommended. Again, from NIH: “Our feeling is that having a regular period helps to make young women with POF feel more normal, like every other young woman having monthly bleeding. Also, should you spontaneously ovulate and conceive, which does sometimes happen, you will miss a period, know to have a pregnancy test, and stop the hormones if pregnant.”
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I had a blood clot. Should I take HRT?

No, women who’ve had blood clots should not take HRT.
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What can I do instead?

If you cannot use HRT there are alternative therapies available. A healthy diet, an exercise plan and stress/symptom management can protect the heart, bones and relieve the symptoms of POF. In truth, those of us on HRT can benefit from alternative therapies also.

Diet: If you are used to eating the typical American diet (lots of fats, sugar, salts and artificial chemicals) you might consider making a change! A switch to a diet that more mimics the Asian diet appears to help to alleviate menopausal symptoms and protect your heart. Their diet emphasizes whole grains, beans/legumes, fruits and vegetables, foods that contain essential oils and fish. Unlike saturated fats, essential oils are not primarily used by the body for energy. Fatty acids help to provide moisture, softness and smooth texture to the skin. They are also a main structural component of all cell membranes. Sources of essential oils include sesame and sunflower seeds, walnuts, trout, salmon and green leafy vegetables.

There are also some vitamins and minerals that can be helpful. A daily supplement (as we stated above in the osteoporosis area) can be helpful. However, it is not enough to take a supplement while continuing an unhealthy diet! Vitamin E at 800 mg per day may help relieve hot flashes, night sweats and vaginal dryness. Vitamin B complex helps in several ways. They help regulate estrogen levels by promoting healthy liver function. They play an important role in the function of the nervous system.

Herbs that are beneficial include chamomile. Yes, like in the sleepy-time teas you may see at the store! Chamomile is a good source of tryptophan, which may help to provide a restful sleep and so it may be helpful if you have insomnia. If you do have insomnia, you may need to make the tea stronger than normal. Start with one tea bag and increase to two or three until you find the amount that works best for you.

Exercise plan: Refer to the osteoporosis section for exercise suggestions for healthy bones. These need to be done regularly – a minimum of three times per week. To strengthen the muscles of the urinary tract, vagina and anus, Kegel exercises can help. These can help to make sex more pleasurable and to prevent leaking of urine that can occur when you sneeze, cough or laugh. They are simple to do. First, you want to find where these muscles are. The easiest way to do this is while you’re urinating. While you’re urinating, stop the flow of urine. The muscle that stopped the flow is what we’re looking for. However, now that you’ve “found the place” do not do this exercise by stopping the flow of urine because it can lead to bladder infections. Contract the muscle, hold for a count of five, relax for a count of five and repeat this 20 times. Do at least 10 sets of 20 every day. The nice thing about this exercise (this exercise may be unlike any you’ve ever done before!) is that it can be done anywhere. They can be done as you stop your car at a red light, while brushing your teeth or putting on make-up. You get the idea.

Stress reduction and relaxation exercises: These can help with both the physical and emotional components. Some of the changes that are occurring are due to the lability of the hormones and some are due to the feelings of loss you may be experiencing due to infertility. Again, all women with POF can benefit from these. Stress reduction and relaxation exercises include abdominal breathing, visualization and meditation. Some women find that acupuncture, acupressure or yoga are helpful as well.

Books could be written just on alternatives and they have been! So, we would recommend that you buy at least one book that addresses alternatives to HRT. See the Resources section at the end of the booklet.
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I don’t hear much about testosterone. Should I take it?

There are certainly good reasons to consider testosterone replacement. Testosterone is often called “the male hormone.” However, we know that testosterone, which is a steroid hormone like estrogen, is also produced in women. Women with POF have lower testosterone levels compared to women who don’t have POF. Testosterone is known to arouse sexual desire. One of the common complaints women with POF have is a loss of interest in sex. In addition, low testosterone levels are associated with greater bone loss in all women (premenopausal, perimenopausal and postmenopausal). In postmenopausal women, testosterone replacement along with estrogen has shown to increase bone density more than estrogen alone.
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Why is there such hesitation about testosterone?

Because there are some distressing side effects even in small doses. They include facial and chest hair, acne, deepening of the voice and possible liver damage. The worst side effect is that it can increase cholesterol levels and raise the risk for cardiovascular disease. There are certainly some good aspects. When will there be additional information? Again from NIH: “We definitely need a lot more research in this area. We definitely can’t recommend male hormone replacement to everyone yet. This is why the NIH is conducting a long-term protocol to evaluate adding a testosterone replacement to the current estrogen/progesterone treatment for women with POF.”
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What are the long-term risks of taking HRT?

Unfortunately, there have not been any studies regarding the long-term risks of HRT on women with POF. The studies that have been completed were in women at natural age menopause. Because women with POF are taking HRT to replace an estrogen deficiency (much like a diabetic takes insulin for diabetes) the risks associated with HRT in natural age menopause can’t be directly correlated.

The biggest fear about taking HRT is the risk of breast cancer. Although women are more likely to die from heart disease or from the complications related to osteoporosis than breast cancer, it is breast cancer we fear.
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Several times you’ve mentioned research that is going on at The National Institutes of Health (NIH). Can you tell me what and where NIH is and what kind of research they’re doing?

On a campus of just under 300 acres, the National Institutes of Health is located in Bethesda, Maryland right outside of Washington, DC. NIH is part of the Public Health Service, which in turn is part of the Department of Health and Human Services. In addition to basic research, NIH does a lot of clinical research. Clinical research involves people who are willing to volunteer for studies of diseases and experimental treatments.

Every patient who is admitted to NIH is enrolled in a scientific study known as a “protocol.” Protocols that are drawn up by a principal investigator and a team of associates pose a question aimed at coming closer to a complete understanding of the mechanisms and eventual cure for some disease or disorder. There are about 900 studies underway at any given time. We are fortunate that POF is one of the disorders being studied. See the Resources section at the end of the booklet for more information.
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I seem to be getting a lot of migraines since I experienced POF, or since I started taking HRT. Is there a connection? What can I do to stop the migraines?

There is a strong connection between hormones, particularly estrogen, and migraines. Recent studies have shown that a sharp drop in estrogen in the body can cause a migraine. When you develop POF, you can experience many hormonal fluctuations that can promote migraines. That is difficult to control. However, you can control the estrogen that enters your body via HRT. If you take oral estrogen, the estrogen in your body spikes as the pill is processed and then drops quickly as it is used up. This fluctuation can cause a migraine, typically 12-16 hours after swallowing the dose of oral estrogen, in migraineurs. Many migraineurs have found that the estrogen patch, which delivers a much steadier dose of estrogen, can help you to avoid migraine triggers. The patch that you change twice a week gives you a steadier estrogen level than the patch that you change once a week and might be preferable. In addition, the patch that you change twice a week actually lasts for 3 1/2 days (84 hours). If you find yourself getting a migraine if you change it less frequently than every 84 hours, you might want to change it more frequently.
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You didn’t answer my question! I wanted to know about folic acid, about…

You’re right! There are so many questions we didn’t answer! This is a booklet and it’s meant as an overview of POF. We were concerned that if we kept answering all the questions readers had (and us too!) that we’d never get this booklet done. Now that you are armed with information about POF, use it as a base to increase your knowledge. As you can see from this booklet there is new information being presented all the time. You will probably find that soon some of this information will be outdated or updated. There are resources listed at the end of the booklet. They can help you on your search for more information. We strongly encourage you to continue to read, research and ask questions on your journey to wellness.
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