POF, Diagnosis & Causes
Dr. Robert Rebar's POF FAQ

1. What is the difference between primary and secondary amenorrhea?

The distinction of primary from secondary amenorrhea is of little value in determining the cause for the amenorrhea. It does help doctors use a "word" shorthand to give a patient's history. A woman who has never had a spontaneous menstrual period has primary amenorrhea by definition. One who has ever had any spontaneous bleeding has secondary amenorrhea.

2. Can you explain the differences between POF and Polycystic ovarian syndrome?

POF and PCO are very different. In the classic case of ovarian failure, there are no eggs in the ovary. In PCO ovulation does not occur regularly but the number of eggs in the ovary is normal. Both may be associated with the absence of menses. There is an excellent discussion of PCO in the Merck Manual-Home Edition (written by me) and which I can not improve upon. It is brief. POF is effectively premature menopause though in some cases the etiology may be autoimmune and some eggs may still be present in the ovaries. There is also a brief discussion of POF.

3. Do the hot flashes and other miserable symptoms ever end? How long do they usually last? Is it generally different fof POF women?

Symptoms of estrogen deficiency last a variable amount of time --and it's not predictable. Some women may have hot flashes for years but most have such symptoms for less than a year. Women with POF appear to be no different that those going through menopause at the expected time. Having said that, women with POF should be provided with exogenous estrogen because of the increased risks of osteoporosis and of heart disease. Women with POF obviously begin the postmenopausal years earlier than others.

4. Can a hysterectomy cause early menopause?

This certainly is possible. It is true that women with a hysterectomy typically go through menopause earlier than others, but not too many years early. I clearly would suggest that you see your physician.

5. Can anorexia or just being underweight cause POF?

No data exist to indicate that anorexia can cause POF. Low estrogen production, be it because of an ovarian cause (as in POF) or a central cause (due to inadequate FSH secretion because of hypothalamic amenorrhea, as may occur in anorexia), can produce similar symptoms. Ovarian failure is documented by determining that FSH levels, produced by the anterior pituitary gland, are markedly elevated.

6. Can stress cause the POF or mimic it in some way?

Stress is not a cause of POF. You should not feel guilty at all. There is nothing you did or can do to cause POF. It may be intermittent and may even "resolve" in a small number of women. Pregnancy is certainly possible, albeit not too common (avg 6-8%) in women once the diagnosis is made. FSH levels may increase and decrease as well.

7. Am I considered "POF" or menopausal?

Women with POF may be considered "menopausal". It is not impossible for ovarian function to return , but it would be highly unlikely. The younger the woman at the time of treatment, the more likely is it that ovarian function will return. I would urge you to discuss your situation with a reproductive endocrinologist and strongly consider estrogen replacement. You clearly are losing bone at an accelerated rate compared to a normal woman your age.

8. POF & the Thyroid - Are all these linked and if so, what could be the next thing I should look out for?

Autoimmune thyroid abnormalities are common in women with POF. Women with POF should be followed for development of autoimmune disorders, though these occur rarely. Most common is thyroid dysfunction which occurs in about 15% of women with POF. There is no link between POF, thyroid dysfunction, and ability to deliver vaginally.

9. I really want to find out is why the POF has happened. Should I pursue going to an endocrinologist? If so, what tests should I expect to have done on me?

The reason for POF is unexplained in most patients. An association with autoimmune abnormalities is just that, an association. The cause is unknown. You didn't do anything to cause this. It's important to be followed for autoimmune disturbances because some have some significant health risks.

10. Are there any higher risks for POF women, (other than apparently heart and bones) - for instance, ovarian cancer? Should any special medical testing be done if one has had POF?

There is no higher risk for ovarian cancer. There may be an increased risk for so-called "autoimmune disorders" in which the body attacks itself. It appears that POF itself may sometimes be an autoimmune disorder. The most common autoimmune disorder is thyroid disease. Women with POF should be followed by a physician to be sure they don't develop such a disorder. This can be done with simple blood tests.

11. How can one find a Dr. with any interest in the POF patient much less one with any expertise?

Reproductive endocrinologists are knowledgeable about this disorder. These individuals have completed additional training in reproductive endocrinology after a residency in ob/gyn. Some general ob/gyns may be knowledgeable and some internist endocrinologists may be knowledgeable as well.

12. Where do I go from here?

Seek the care of a reproductive endocrinologist in your area. Information can best be provided to you face to face so that you have the opportunity to ask questions.