I know this sudden, unexpected loss of ovarian activity and possibly fertility can be emotionally challenging, but we are here to help you through it

Dear Patient,

I know the diagnosis of premature ovarian failure has hit you hard, and sometimes what happens after I tell you the diagnosis is a blur. There is never enough time in an office visit to really tell you all the nuances about your diagnosis and how to move forward with your dreams and goals for life. So here is a summary for you to review as you process the diagnosis of premature ovarian failure.

What is premature ovarian failure (premature ovarian insufficiency)?

Premature ovarian failure, also known as premature ovarian insufficiency (POI), occurs when the ovaries stop functioning normally before the age of 40. Unlike natural menopause, where the decline in ovarian function occurs gradually, POI is characterized by a sudden and unexpected loss of ovarian activity.

Part of why it can appear suddenly is that some women are on birth control or pregnant and nursing, and then when they stop the birth control or finish breastfeeding the periods don’t return. The unexpected part is that women are “too young” to be going through menopause – so they don’t expect to stop having periods or to have a hard time conceiving.

Risk factors and causes of primary ovarian insufficiency

The exact causes of POI are not always clear, but certain factors can increase the risk of developing this condition. These include genetic disorders, autoimmune diseases, chemotherapy or radiation therapy, certain infections and ovarian surgery.

Genetic: Turner’s syndrome (45XO), Fragile X syndrome, mutations in genes like FSHR, BMP15, or GDF9, NR5A1, FSHB, and FIGLA. Other genetic causes are diseases such as galactosemia, galactokinase deficiency, and certain forms of 46,XX disorder of sex development.

Autoimmune diseases: Certain autoimmune diseases have been implicated as causing oophoritis (inflammation of an ovary) and decreased ovarian reserve. Lupus, rheumatoid arthritis, Addison’s disease (adrenal), Hashimoto’s thyroiditis, COVID-19 and Lyme disease are some of the ones most often cited.

Chemotherapy/radiation: especially chemotherapy with cyclophosphamide, ifosfamide and busulfan. Radiation to the pelvis for cervical or colorectal cancer is also a risk factor for premature ovarian failure.

Infections: Chlamydia and gonorrhea are the agents most often associated with pelvic infections. However, tuberculosis, mumps and other systemic infections (like COVID-19) may also affect the ovary. In addition, the immune system may be activated against the infection and subsequently affect the ovary.

Ovarian surgery: Surgery for endometriosis, tumors, ovarian torsion and tubo-ovarian abscess.

Symptoms of premature ovarian failure & diagnosis

Recognizing the symptoms of premature ovarian failure is crucial for early detection and management. Some common signs include irregular or absent periods, hot flashes, vaginal dryness, mood swings, decreased sexual desire, and difficulties with concentration or memory.

Diagnosing POI involves a combination of medical history, physical examination, hormone level measurements (such as FSH and estradiol), and possibly an ultrasound to assess ovarian reserve. Although the diagnosis may feel overwhelming, remember that early detection allows for better management and potential fertility preservation options.

Implications and emotional well-being

Receiving a diagnosis of premature ovarian insufficiency can be emotionally challenging. It is important to understand that this condition does not define your worth as a woman. It also does not mean that you will not be able to be a mom. There are many ways to grow a family, and we can talk about these in detail at a later time.

Coping with the potential loss of fertility and hormonal changes can evoke feelings of grief, sadness or frustration. Support from friends, family or a counselor can help you navigate through these emotions and develop coping strategies. We have a list of counselors that specialize in fertility and hormones and they can be especially helpful since you won’t have to explain the disease to them.

Treatments for premature ovarian failure

While premature ovarian failure is not curable, various treatment options can help manage the symptoms and maintain overall well-being. Hormone replacement therapy (HRT) is often recommended to replace the hormones that the ovaries are no longer producing. This can help relieve symptoms such as hot flashes, vaginal dryness and mood swings, while also protecting against long-term health risks such as osteoporosis.

In addition to HRT, other considerations may include fertility preservation options such as oocyte (egg) freezing or the use of donor eggs for those desiring to conceive.

While POI is associated with diminished ovarian function and reduced fertility, spontaneous pregnancies can still occur in some cases. Approximately 5%-10% of women with POI may experience occasional spontaneous ovulation and conceive naturally, especially within a few years of the diagnosis.

Lifestyle changes and self-care

Incorporating healthy lifestyle choices can significantly impact your overall well-being when living with POI. Regular exercise, a balanced diet and adequate sleep can help alleviate some symptoms and improve your overall quality of life. Avoiding smoking, excessive alcohol consumption and maintaining a healthy weight are also important for your long-term health.

Facing a diagnosis of premature ovarian insufficiency can be overwhelming but remember that you are not alone. Educating yourself about the condition, seeking emotional support and discussing treatment options with me are vital steps in managing this condition effectively. While the road ahead may present challenges, with appropriate support and self-care, it is possible to lead a fulfilling and happy life.

With hope for the future,

Dr. Mary Hinckley