What are the other Names for this Condition? (Also known as/Synonyms)

• Absence of Menstruation - Primary
• Menstrual Dysfunction
• Primary Amenorrhoea

What is Primary Amenorrhea? (Definition/Background Information)

• Amenorrhea is the inability to menstruate or being unable to undergo the normal menstrual cycle of having regular monthly periods
• Any young girl, who is around 15 years of age or older, and who has not begun her monthly cycles, but has undergone changes that occurs with puberty is referred to as having Primary Amenorrhea
• The onset of the condition may be influenced by several factors. The most common factors that may trigger the condition is an hormonal imbalance
• The most significant symptom of Primary Amenorrhea is the absence of first menstruation in a girl, who has reached the age of puberty. The disorder is associated with an increased risk of hip and wrist fractures
• The treatment of Primary Amenorrhea depends upon the underlying cause. Generally, Primary Amenorrhea has good prognosis, if it is caused by a ‘treatable’ condition/disorder
• In certain cases, when the disorder is not treatable, psychological support may be essential for the affected women

Who gets Primary Amenorrhea? (Age and Sex Distribution)

• Primary Amenorrhea is a condition that affects young girls who are around the age of 15 years or older
• The condition is prevalent worldwide. Current research does not indicate the condition being more predominant among a particular set of racial or ethnic group

What are the Risk Factors for Primary Amenorrhea? (Predisposing Factors)

The risk factors associated with Primary Amenorrhea are:

• Females with a family history of this condition are at a greater risk of developing it
• Having poorly developed genital and pelvic organs
• Girls with eating disorders such as anorexia or bulimia nervosa
• Some female athletes are also at higher risk of developing this condition

It is important to note that having a risk factor does not mean that one will get the condition. A risk factor increases ones chances of getting a condition compared to an individual without the risk factors. Some risk factors are more important than others.

Also, not having a risk factor does not mean that an individual will not get the condition. It is always important to discuss the effect of risk factors with your healthcare provider.

What are the Causes of Primary Amenorrhea? (Etiology)

In many cases, the cause of Primary Amenorrhea is unknown. In other cases, the causes of Primary Amenorrhea may include:

• Congenital defects (defects children are born with) such as:
  • Imperforate hymen: Hymen (a membrane that covers the vagina ) is without an opening and completely obstructs the outflow of vagina
  • Absence of uterus or vagina
  • Presence of vaginal septum
  • Abnormally-closed vagina
• Hormonal disorders: Hormones play a very important role in regulating a woman’s menstrual cycle
  • Hormonal problems usually occur due to some disorder in the part of brain that control the menstrual cycle
  • It could also be due to abnormally-resistant ovaries, not responding to body hormones
  • Hormonal imbalances, as part of a genetic disorder
• Chronic long-term medical condition such as cystic fibrosis
  • Eating disorder such as anorexia nervosa
  • Poor nutritional status
  • Thyroid gland dysfunction
  • Brain and ovarian tumor
  • Some drugs may also cause Primary Amenorrhea

What are the Signs and Symptoms of Primary Amenorrhea?

The signs and symptoms of Primary Amenorrhea are:

• Absence of menstrual flow after reaching the age of puberty
• Sexual characteristics, such as axillary and pubic hair growth, and breast development, may or may not be present
• Some ladies may have a breast discharge indicating a brain tumor
• Some may have increased facial hair growth due to hormonal imbalance

How is Primary Amenorrhea Diagnosed?

The diagnosis of Primary Amenorrhea includes:

• A physical exam with evaluation of medical history. The physical examination may involve:
  • Examination of the genital organs for age-appropriate growth and development
  • Breast examination
  • Pubic and axillary hair growth pattern
• A urine pregnancy test is generally performed to exclude pregnancy as a cause

Several blood and hormonal tests may be done to check the hormonal levels, which include:

• FSH
• LH
• Estrogen and progesterone
• TST
• Prolactin

Some other specialized tests to find out the cause of Primary Amenorrhea may include:

• CT scan of the head
• MRI scan of the brain
• Pelvic ultrasound
• Chromosomal analysis

Many clinical conditions may have similar signs and symptoms. Your healthcare provider may perform additional tests to rule out other clinical conditions to arrive at a definitive diagnosis.

What are the possible Complications of Primary Amenorrhea?

The complication of Primary Amenorrhea includes:

• Infertility
• Osteoporosis or osteopenia, resulting in easy fractures, particularly of the hip and wrist
• Psychological effects on women such as poor self-esteem, increased shyness, and social anxiety

How is Primary Amenorrhea Treated?

The treatment of Primary Amenorrhea depends primarily upon its underlying cause:

• Surgery is required to correct certain birth defects that include genital tract obstructions and tumors of the brain and ovaries
• Hormonal therapy: Girls may be administered hormones in order to maintain their femininity
• If Primary Amenorrhea is due to an eating disorder or excessive exercising, the periods will often begin when the body weight returns to normal or when the level of exercising is reduced

Some cases of Primary Amenorrhea cannot be treated and such ladies and women may require adequate psychological and family support.

How can Primary Amenorrhea be Prevented?

Primary Amenorrhea is a disorder that may be prevented if the underlying cause is known and can be treated. Prevention of the condition is based on the underlying factors that lead to Primary Amenorrhea.

• Individuals with a genetic condition will most likely develop the condition; in such cases, there may not be effective preventive measures
• Whereas girls who developed the condition, due to an improper diet or because of certain lifestyle habits, can prevent this condition from arising
• Female athletes may prevent a risk of Primary Amenorrhea, if proper health measures are followed

What is the Prognosis of Primary Amenorrhea? (Outcomes/Resolutions)

• Current studies indicate that Primary Amenorrhea has a very good prognosis, as long as it has not developed from a genetic defect
• Girls and young ladies who face hormonal imbalances affecting the normal physiology of their body, can undergo hormonal therapy in order to address the imbalance

Additional and Relevant Useful Information for Primary Amenorrhea:

A woman with Primary Amenorrhea may be unable to become pregnant, despite medicines and hormones. In such cases, psychological support and counseling is of utmost importance.