POI 101
What is Primary Ovarian Insufficiency (POI)?
For a woman under the age of 40, Primary Ovarian Insufficiency (or POI) refers to the loss of the normal function of her ovaries. A woman’s ovaries are responsible for secreting important hormones. When a woman’s body doesn’t get these hormones in normal levels, serious health problems can arise. Primary Ovarian Insufficiency is a disease that is related to a woman’s menstrual cycle. Primary Ovarian Insufficiency is also sometimes called premature ovarian failure (or POF). In the past, primary ovarian insufficiency (POI) has been inaccurately referred to as “premature menopause” or “early menopause.” Patients with Primary Ovarian Insufficiency may have return of ovarian function intermittently and pregnancies can even occur occasionally after the diagnosis.
How many women have Primary Ovarian Insufficiency?
Accurate statistics about the disease are difficult to obtain due to misdiagnoses and undiagnosed cases. The estimates (from a study done in 1986) are as follows:
1 in 100 women by 40 years of age
1 in 1000 women by 30 years of age
1 in 10,000 women by 20 years of age
What are some misconceptions about Primary Ovarian Insufficiency?-
-One important misconception is that it is the same as premature menopause. Sometimes Primary Ovarian Insufficiency / Premature Ovarian Failure is referred to as “premature menopause” but this is inaccurate and can give the wrong impression about the disease. The term premature menopause is sometimes used in news articles or websites related to Primary Ovarian Insufficiency / Premature Ovarian Failure because people tend to know the term “menopause”; but this can be problematic because it has the potential to steer public awareness in the wrong direction and take away from the seriousness of the disease.
-A second important misconception about Primary Ovarian Insufficiency is that girls and young women with the condition should be managed in the same manner as women going through normal menopause at the normal age. Women going through normal menopause are typically between the ages of 45 and 60 and have their own special needs. Young women that have Primary Ovarian Insufficiency experience a different set of physical and emotional circumstances; thus they have different medical and emotional needs and must be treated accordingly.
-A third important misconception about Primary Ovarian Insufficiency is that Hormone Replacement Therapy (HRT) is a cure for the condition. While HRT has been proven to help women that have Primary Ovarian Insufficiency control some of the symptoms of the disease and decrease their risk for developing other health problems, it does NOT cure the disease. HRT also does NOT alleviate all of the symptoms of Primary Ovarian Insufficiency for every young woman taking the therapy. Some women have better results than others and some women suffer from difficult side effects.
What are common symptoms of Primary Ovarian Insufficiency?
The following is a non-inclusive list of some common symptoms of Primary Ovarian Insufficiency. Please note that the symptoms may vary from one individual to another, especially in the cases where Primary Ovarian Insufficiency is diagnosed in addition to another new or existing health problem: missed or irregular periods, hot flashes/night sweats, inability to concentrate, loss of memory, insomnia, depression, loss of energy, irritability/mood swings, sexual dysfunction, vaginal dryness, infertility
Why do the symptoms vary so widely?
Primary Ovarian Insufficiency is a complex disease and each young woman diagnosed with it may have a very unique set of health circumstances that she is dealing with in conjunction with Primary Ovarian Insufficiency. Some young women that have this disease may exhibit all of the commonly known symptoms, while others are largely asymptomatic. This variance of symptoms along with lack of public awareness are both reasons that contribute to misdiagnosed cases and often times undiagnosed cases. It is important for a young woman to pay attention to her menstrual cycle and her body in general so that if she seeks medical help, she will be well equipped to answer the doctor’s questions.
What are common symptoms of Primary Ovarian Insufficiency?
The following is a non-inclusive list of some common symptoms of Primary Ovarian Insufficiency. Please note that the symptoms may vary from one individual to another, especially in the cases where Primary Ovarian Insufficiency is diagnosed in addition to another new or existing health problem: missed or irregular periods, hot flashes/night sweats, inability to concentrate, loss of memory, insomnia, depression, loss of energy, irritability/mood swings, sexual dysfunction, vaginal dryness, infertility
Why do the symptoms vary so widely?
Primary Ovarian Insufficiency is a complex disease and each young woman diagnosed with it may have a very unique set of health circumstances that she is dealing with in conjunction with Primary Ovarian Insufficiency. Some young women that have this disease may exhibit all of the commonly known symptoms, while others are largely asymptomatic. This variance of symptoms along with lack of public awareness are both reasons that contribute to misdiagnosed cases and often times undiagnosed cases. It is important for a young woman to pay attention to her menstrual cycle and her body in general so that if she seeks medical help, she will be well equipped to answer the doctor’s questions.
How is Primary Ovarian Insufficiency diagnosed?
Primary Ovarian Insufficiency is diagnosed by performing certain blood tests and an analysis of a woman’s recent menstrual cycle history. A doctor will also request information regarding many of the common symptoms of the disease to aid in diagnosis. A very common first symptom of Primary Ovarian Insufficiency is having menstrual irregularities such as missed or loss of periods but there may be many others depending on the situation.
What kinds of tests are performed to help diagnose Primary Ovarian Insufficiency?
At the present, the following tests may be used by a physician to diagnose Primary Ovarian Insufficiency. This is not an all inclusive list.
-Pregnancy test – Used to make sure the patient isn’t menstruating because she is pregnant.
-Follicle stimulating hormone (FSH) test – This is a blood test to see if the levels of FSH are unusually high.
-Anti-Müllerian hormone (AMH) test – This is a blood test used to assess ovarian reserve and function.
There are other tests that may be performed in conjunction with pregnancy tests and FSH, depending on the patient’s specific health situation. This is not an all inclusive list.
-Genetic testing – Testing for premutation in the Fragile X gene and other genetic disorders.
-Other blood tests – Measuring blood levels of prolactin, luteinizing hormone (LH), and estradiol.
Why is early diagnosis of Primary Ovarian Insufficiency so critical to a woman’s health?
A delay in diagnosis increases a woman’s chances of developing serious health problems such as low bone density. In addition to the physical problems that accompany late diagnosis, there are many emotional struggles with late diagnosis that can have major adverse impacts in a woman’s life. Examples of such situations are not being able to function properly at work due to lack of sleep and having to visit various health specialists for unrelated problems because an accurate diagnosis of Primary Ovarian Insufficiency was never made.
Why does it take so long for a woman to get diagnosed on average?
Primary Ovarian Insufficiency is not well known in the medical community so it is very challenging for patients to encounter a doctor that has prior experience treating Primary Ovarian Insufficiency cases to be able to provide a proper diagnosis. By raising public awareness and working with the medical community, our campaign POI/POF is helping to get more women diagnosed early.
Why is it that the diagnosis of Primary Ovarian Insufficiency can be devastating to a woman?
There are many reasons that receiving the news that a patient has Primary Ovarian Insufficiency can be emotionally troubling and difficult to deal with. One of the reasons includes the problem of dealing with infertility. Fertility is a very serious topic for a woman and her family, thus the shock of hearing that she has a very slim chance of getting pregnant (5-10%), can really be a painful emotion for her to manage.
Why is the way in which a woman with Primary Ovarian Insufficiency is informed of the diagnosis so important for a woman and her family?
All patients deserve respect. Letting a woman know over the phone that she has Primary Ovarian Insufficiency underestimates the significant emotional turmoil that this disorder induces and is not respectful. Women should be given the diagnosis in person and given adequate time to ask questions and grasp the tough news.
What kinds of treatment options are available for women diagnosed with Primary Ovarian Insufficiency ?
The most common treatment option to help alleviate some of the symptoms caused by lack of estrogen is Hormone Replacement Therapy (HRT). HRT consists of two types of hormones called estrogens and progestins. There are different prescription medicines available that contain these hormones.
Are dietary changes needed for a woman that has been diagnosed with Primary Ovarian Insufficiency ?
Yes, it is important for her to get adequate calcium and vitamin D which are essential to maintaining strong bones and are also responsible for other very important functions in the body. Lack of vitamin D can cause problems absorbing calcium for a woman with Primary Ovarian Insufficiency, thus underscoring the importance of getting these vitamins and minerals. Proper levels of calcium intake can be obtained either by eating foods containing calcium or supplements. Proper levels of vitamin D can be obtained by exposure to sunlight and supplements. Also for vitamin D, there are foods that contain the vitamin, but it may be difficult to obtain the amount of necessary daily vitamin D for a woman with Primary Ovarian Insufficiency from foods alone since there are very few foods that contain the vitamin.
How about special exercise needs?
A woman diagnosed with Primary Ovarian Insufficiency should get plenty of weight bearing exercise on a regular basis and stay as fit as possible. In general, weight bearing exercise is good for the bones and muscles. Also, cardio-based exercise is good for the heart and lungs.
How about treatment of infertility?
There are currently no proven treatments to restore ovarian function and fertility for a woman diagnosed with Primary Ovarian Insufficiency. This news for a woman being diagnosed with Primary Ovarian Insufficiency can be especially devastating and a source of major grief, especially for patients who do not have children and had planned on having a family.
Are other treatments necessary?
Yes, for a woman’s emotional health, which is equally as important as her physical health. A woman with Primary Ovarian Insufficiency has to get support from her family and friends as much as possible. In some situations, counseling may also help her to work through specific challenges in her life that a diagnosis of Primary Ovarian Insufficiency brought with it.
What are some of the long-term health problems associated with Primary Ovarian Insufficiency?
-Osteoporosis
-Genetic disorders involving dementia, mental retardation, and neurodegeneration
-Hypothyroidism (Low thyroid function)
-Adrenal Insufficiency (Addison’s disease )
-Dry Eye Syndrome
-Depression
-Heart Disease
-Diabetes
-Infertility
What are my chances of conceiving if I have been diagnosed with POI?
The chance of conceiving with your own eggs depends on your age and the stage at which the drop in egg supply has been detected. If you were born without functioning ovaries and without eggs (a condition sometimes known as gonadal dysgenesis), then spontaneous conception will not be possible. On the other hand, spontaneous conceptions have occurred for women who have been formally diagnosed as being menopausal. This is true because even when the egg supply becomes very low and menses have not occurred for 6 months or more, an egg may still release and pregnancy may still occur. The chance of conception will drop with length of time since diagnosis. The timing of the egg release is unpredictable.
Unfortunately, fertility medications (tablets such as clomiphene or injections of gonadotropins) have not been shown to be helpful in promoting the release of an egg in most cases once a woman’s own FSH level has become very high. In some situations, women have been told that they have “diminished ovarian reserve” rather than “primary ovarian insufficiency.” In this situation, conception may very well still be possible, particularly if you are young. The likelihood of conception will vary depending on the severity of the drop in egg supply. It is a good idea to discuss your own particular situation with a doctor who is very familiar with POI in order to get an accurate picture of how likely it is that conception will be possible with your own eggs.
Women with even the most severe forms of POI can conceive and carry a child with the use of donor eggs. Although some people may prefer to choose adoption rather than egg donation, many people do choose egg donation as a way of building their family. With egg donation, a donor (usually anonymous, but sometimes known to the intended parents) will have eggs retrieved. These eggs will be fertilized with sperm from the intended father or from a sperm donor as appropriate. Hormones (estrogen and progesterone) are taken by the intended mother to prepare her uterine lining. One or two embryos are then transferred into the uterus of the intended mother. Hormone support is needed for the first trimester of pregnancy. Beyond that time, the placenta makes all the hormone that the pregnancy needs to continue. Delivery occurs just as if the pregnancy had occurred spontaneously. The mother can choose to breast-feed the child, also just as if the pregnancy had occurred spontaneously.
