Editor’s note: This Fact Sheet reprinted with permission from the International Premature Ovarian Failure Association website (no longer active). The Infertility Voice is honored to ensure this information remains available on the web.

Who:

Approximately 1- 4% of the female population has POF. That’s about 250,000 to 1 million women in the United States alone.

What:

Women are generally born with enough eggs in their ovaries so that they ovulate one each month from puberty until about the age of 50. At that time, the supply is used up and menopause occurs. But, in girls and young women with POF, something has happened to the supply of eggs in the ovaries at a young age. It could be a loss of eggs, a dysfunction of the eggs or the removal of the ovaries at a young age. Unlike menopause, this is not a natural occurrence. This loss of ovarian function occurs at too young an age to be considered a natural, although premature, menopause.

Premature Ovarian Failure usually occurs in women under the age of 40 and can happen as early as the teen years. Premature ovarian failure is also called primary ovarian insufficiency (POI), premature menopause, and hypergonadotropic amenorrhea.

Symptoms:

Women with POF stop having periods. Sometimes their periods may be normal for a few months and then skip a few months. They may also have hot flashes or night sweats. It is possible to still have periods and have hot flashes. It is also possible to not have any periods due to POF and to not have any other symptoms at all. Other symptoms may include sleeping problems, mood swings, vaginal dryness, energy loss, dry eyes, low sex drive, painful sex, and bladder control problems.

Causes:

Many times the cause behind POF is unknown. For a few women, however, a cause can be found. Some causes include:

• Chromosomal/Genetic:
  • Turner syndrome
  • Swyer syndrome
  • Androgen Insensitivity Syndrome
  • Permutation of Fragile X
• Familial
• Enzyme Defects/Metabolic:
  • Galactosemia
  • Thalassemia major treated with multiple blood transfusions
  • Hemochromatosis
• Chemotherapy/Radiation Therapy-Related
• Surgical: removal of the ovaries, multiple ovarian surgeries
• Viral Infection
• Abnormal gonadotropin (FSH and LH) secretion or action
• Autoimmune disease. Diseases associated with POF:
  • Thyroid Dysfunction
  • Polyglandular Failure I and II
  • Hypoparathyroidism
  • Rheumatoid Arthritis
  • Idiopathic Thrombocytopenia Purpura (ITP)
  • Diabetes
  • Pernicious Anemia
  • Adrenal Insufficiency
  • Vitiligo
  • Systemic Lupus Erythematosus (also called SLE or Lupus)

Diagnosis

If you skip your period or have hot flashes, see your doctor ASAP! POF is more than a GYN problem. It is an endocrine disorder and has serious health consequences that must be addressed. Prepare for your visit. Be ready to tell your doctor about your menstrual cycle changes, symptoms like hot flashes, and whether you’ve had ovarian surgery or radiation therapy. Tell him/her whether you have any endocrine disorder, any recent infections such as pelvic inflammatory disease, or a family history of POF.

Some doctors may try to blame your symptoms on stress. Be prepared to insist on testing to eliminate POF as a problem. Take this fact sheet with you, show it to your doctor, and ask for a work-up that includes two FSH tests done a month apart. FSH stands for follicle stimulating hormone and is a blood test that indicates if the ovaries are working correctly. Normal FSH levels are 10-15 mlU/ml and under; women with POF often have FSH levels above 40 mlU/ml (post- menopausal range). For a more thorough list of tests done to diagnose POF and its causes, visit the comprehensive Frequently Asked Questions About POF page.

Consequences:

Health concerns for women with POF include osteoporosis and an increased risk of heart disease. POF is sometimes associated with autoimmune disorders (such as thyroid problems, diabetes or adrenal problems) that may require further medical treatment. Because of the problem with the eggs, infertility is a major consequence that is often quite devastating. Many women say that before they even had time to make a decision about having children, the choice is taken away from them. About 6 – 8% of women with POF will become pregnant. There is currently no way to tell who these 6 – 8% will be.

Treatment:

Generally, POF is treated with hormone replacement therapy, often at a higher dose than that given to women who are in menopause. It is started at a low dose so that you can get accustomed to having these hormones in your body again, and is gradually increased to the proper dose. Hormone replacement therapy is generally estrogen and progesterone and sometimes also includes testosterone. Birth control pills are sometimes substituted for hormone replacement therapy. Additionally, women with POF are encouraged to eat a balanced diet, exercise regularly (aerobics and weight-training), take calcium and vitamin D to decrease health risks of osteoporosis and heart disease. Currently, there is no scientifically established treatment to restore fertility for women diagnosed with POF.

Support:

You may be tempted to make a decision NOW about what to do about having children, taking HRT or an alternative route. Please give yourself enough time to get a definite diagnosis and do some research. The International Premature Ovarian Failure Association can help. Our goals are to provide community, support, and information to women with Premature Ovarian Failure (POF) and their loved ones; to increase public awareness and understanding of POF; and to work with health care professionals to better understand this condition.

Revised October 2010

This material Copyright © 2014 by IPOFA. All rights reserved.