From 2000 to 2014 , Janis served as the DC support group leader for women in need of emotional support after infertility diagnosis.
POI Prevents Some Women From Becoming Pregnant
Primary Ovarian Insufficiency Dashes Dreams and Expectations
In most cultures, young girls are reared with the expectation that they will one day marry and have children. Most girls dream of becoming wives and mothers who will raise families. Most women grow up playing house with doll babies, changing their diapers, combing their hair, and feeding them with toy bottles.
In past generations, more so than in current times, women were conditioned early to bear children and become mothers. This conditioning was also tied to cultural, religious, economic, and societal expectations, which was the norm. Bearing children was the standard by which women were measured. The term "womanhood" embodied the nurturing of children, marriage, and maybe career. Although today's women are far more liberated in their ability to have choices regarding family planning, those dreams and expectations are as strong for many in the current generation of women as they were back then.
When that expectation cannot be met due to infertility, it is a devastating blow to many a young woman who had every intention of fulfilling her dreams of becoming a mother by bearing a biological child. A little known type of infertility called Primary Ovarian Insufficiency or "POI," stops that dream in its tracks. For the majority of women who receive the diagnosis of POI, it means they are unlikely to have biological children. It is estimated that only 5 or 10% of women with this condition may spontaneously become pregnant on their own, after diagnosis.
It is estimated that only 5 to 10% of women diagnosed with Primary Ovarian Insufficiency may spontaneously become pregnant on their own, without any intervention or invasive treatment.
[For more information on other statistics, see link at the end of this article]
POI News Feature Informs Viewers
About 10% of Couples in the US are Affected by Infertility
Primary Ovarian Insufficiency (POI) Terminology and Clinical Trials at the National Institutes of Health
POI was initially referred to as "Premature Menopause" or "Premature Ovarian Failure" or "POF," based on an earlier understanding of what appeared to happen as the ovaries "failed" to function in young women of child-bearing age. In 1988, the National Institutes of Health (NIH) Clinical Center began conducting research in a study of women who had been diagnosed with this unexpected and rare form of infertility.
Over the years of many clinical trials, the diagnostic term was refined to reflect the "insufficient" nature of the ovaries, which may be related to a genetic or autoimmune disorder. It is also important to distinguish this diagnosis from "early" menopause which occurs in older women.
Research scientist, Dr. Lawrence M. Nelson, MD, has been at the forefront of clinical research on Primary Ovarian Insufficiency at the Eunice Kennedy Shriver National Institute for Child Health and Human Development. Over the last 26 years, Dr. Nelson's work has increased awareness and understanding for young women who struggle with the physical and emotional impacts of this condition. His work, along with other researchers around the country, have provided a wealth of clinically-based information, expanding knowledge and treatment in the fields of infertility, endocrinology, psychology, gynecology and obstetrics.
Primary Ovarian Insufficiency: Some Possible Causes
Other Chromosomal Abnormalities
What is Primary Ovarian Insufficiency (POI)?
POI is a problem in which the ovary produces insufficient amounts of ovarian hormones. It is also a cause of infertility that affects approximately 1% of young women in the United States, under the age of 40. The disorder can be seen in teenagers as young as 13 years of age.
The first symptom indicating that something is wrong may be irregular or absence of menstrual periods for four or more months. Symptoms of hot flashes, or vaginal dryness and painful intercourse related to estrogen deficiency are other associated symptoms. Another symptom, particularly for women who are coupled, is an inability to conceive despite several attempts over a long period of time.
It is usually during a visit to her gynecologist that a woman finds out through a measure of her hormone levels that her estrogen is low and her follicle stimulating hormone (FHS) is very high because it's working overtime to get the cycle going. The fact is that, in most cases, her ovarian reserve of eggs is very low. When this insufficiency of eggs occurs in young women, it presents with several symptoms which affects overall physical and emotional health, not just fertility.
Major Symptoms of POI Include Frustration and Hot Flashes
The Significance of a Missed Menstrual Cycle
For most women, a missed period might be considered a "break" from the monthly reminder of the inconvenience of our womanhood. But for young women of child-bearing age, a menstrual period is actually a monthly indicator of not only fertility, but of normal functioning of the endocrine system, hormonal balance, normal functioning of the secretion glands and reproductive organs.
When a woman's period is abnormal, it is a sign that optimal functioning of the body is off kilter. With a diagnosis of POI, untreated symptoms can disrupt daily functioning, increasing long term consequences to a woman's overall health.
Symptoms and Diagnosis of Primary Ovarian Insufficiency
Although the diagnosis of POI may differ for each woman, there are basic symptoms of the disorder. These include:
- Irregular or missed menstrual cycles
- Hot flashes during the day and night sweats
- Mood swings
- Inability to focus or concentrate
- Fatigue and loss of energy
- Anxiety and/or depression
- Decreased libido
- Vaginal dryness and painful intercourse
- Dry eye or inability to make tears normally
Not all women will have every symptom listed. Some women have only a few mild symptoms while others present as severe cases with all symptoms, complicated by a clinical depression and other physical ailments.
These basic symptoms resemble a diagnosis of menopause which has often led to the misdiagnosis of a younger woman. This may delay proper care and an opportunity to explore alternatives to having children.
This is why it had been very difficult to correctly diagnose POI until recent years when organizations like the former International Premature Ovarian Failure Association (IPOFA) and the National Institutes of Health Clinical Center successfully advocated for education, scientific research, proper diagnosis, and volunteer-based support groups. Other organizations like Rachel's Well, a site dedicated to the support of women with POI, later joined the ranks of NIH and IPOFA, in the push to successfully get the word out to healthcare providers and patients about the uniqueness of the diagnosis and to provide support to women worldwide.
Emotional Impact of Primary Ovarian Insufficiency
Receiving a diagnosis of infertility is a very painful event in the life of a woman. It's heart breaking for a newly married couple just beginning to start a family and find they aren't conceiving. It is a unique type of grief felt by all parties in the family, including potential grandparents.
The uniqueness about Primary Ovarian Insufficiency (POI) is that it strikes women under 40, often in their teens and early twenties. The majority of these women don't have children and most are single at the onset of symptoms.
POI not only impacts the dream of having children but affects the physical health of women at onset of diagnosis and in the future. They are having to deal with symptoms reserved for older women who are in menopause while at the same time embracing the shocking news of never being able to have children naturally.
This reality affects a young woman's self-esteem, feelings of worth, and self-confidence in her ability to maintain her youth and good health. It also creates inner conflicts about identity and purpose as a woman if her identity is strongly based on bearing biological children and becoming a mother. In addition, for single women, they grapple with an added anxiety of having to share the news with a potential mate who may want biological children.
The emotional impact of being diagnosed with a rare form of infertility at a young age often requires counseling and support provided by a therapist or support group. A young woman with infertility often feels broken, like an empty flower pot, where blooms were meant to be but never bud. Uncertainty and mixed emotions define the young life of a woman diagnosed with POI, unlike that of menopause in later years, which is an expected event women transition into naturally, around the age of 50.
Living With Primary Ovarian Insufficiency: Support and Options
It is imperative that woman get the help they need early, to address the short-term and long term effects of a Primary Ovarian Insufficiency diagnosis.
Early intervention includes a "window" wherein medical evaluation, treatment, and emotional support will have the greatest impact for success. Consider the following to increase the probability of living optimally with POI:
- See a gynecologist and/or an endocrinologist for baseline testing as soon as symptoms occur or persist. These tests may include a dexa-scan to measure bone density and blood tests to determine need for hormone replacement therapy (HRT).
- Don't hesitate to get a second opinion for clarity on diagnosis and proper treatment. It may take several tries before the correct regimen of treatment is found for each unique case.
- See a therapist or attend an infertility support group to address the emotional impact and devastating loss the diagnosis creates, which may include depression.Talking with other women who understand provides an invaluable connection and bonding to others which makes the burden easier to carry.
- Empower yourself by researching and learning all you can about the symptoms and treatment of POI.
- Explore options to having a family which may include donor egg, adoption, foster parenting, surrogacy, spontaneous pregnancy, or "choose" to be childless.
- Take your time to embrace, accept, understand, and heal from the diagnosis before making any major decisions too soon. [Medical experts on the individual course of POI suggest waiting up to three years to complete comprehensive assessments and treatment, and for the possible spontaneous recovery of ovulation through the body's natural ability to heal itself.]
- Engage in other aspects of your life with zeal and passion, remembering that fertility is only one part of womanhood and does not have to define your total existence.
- Take good care of yourself by participating in nurturing activities, e.g., pampering, social and recreational activity, exercise, good nutrition, and spiritual healing.
Primary Ovarian Insufficiency Genome Sequencing Research: Hope for the Future
Dr. Amber Cooper and her team of researchers at Washington University, St. Louis, and Dr. Lawrence M. Nelson and his team of NIH researchers are currently collaborating to conduct a longitudinal study of the genetics involved in women diagnosed with Primary Ovarian Insufficiency. They are using genome sequencing technology to isolate variants that may be identified as the genetic predisposition which causes of POI.
This research involves women who have participated over the years in clinical trials at NIH. The findings are expected to provide answers and further broaden the understanding of the basis of this rare form of ovarian hormone deficiency and associated infertility.
Perspectives From the University of Pittsburgh Medical Center
Comprehensive Information on POI/POF
- Primary Ovarian Insufficiency: Get the Facts About Treatment
Learn about primary ovarian insufficiency (POF/POI) - (the normal functioning of ovaries in women under 40 stop). Some causes of POF include follicle depletion or dysfunction.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2014 Janis Leslie Evans
Janis Leslie Evans (author) from Washington, DC on September 03, 2015:
Thanks for stopping by, Audrey. Appreciate the sharing. Very important topic for young women who are diagnosed.
Audrey Howitt from California on September 03, 2015:
Wonderful article! So full of great information. Sharing this!
Janis Leslie Evans (author) from Washington, DC on February 24, 2015:
I'm so happy to know that this article gave you a better understanding. I know how difficult it is, especially when the reality of it hits. I hope you will continue to reach out and receive support on your journey. I wish you and your husband the best.
Dncampos88 on February 24, 2015:
thank you for this aricle. It's helped me get a better understanding. I was diagnosed with POF when I was 16 but it never really hit me until I got married and my husband and I are thinking of starting a family. I've been needing a lot of support lately so thank you again.
Janis Leslie Evans (author) from Washington, DC on July 24, 2014:
Thank you very much, ologsinquito, for those comments. Yes, it is a little know type of infertility that can affect very young women. I really appreciate your visit.
ologsinquito from USA on July 24, 2014:
This is very well written and complete. It must be very devastating when this happens. I had no idea that teenagers can experience ovarian failure.
Janis Leslie Evans (author) from Washington, DC on May 20, 2014:
You're very welcome, ladyweight. I'm pleased you found it informative. It definitely makes us look closer at changes in our bodies we think are benign but are worth checking out. Thanks for stopping by and reading.
Melesa Francis-Turner on May 20, 2014:
Informative hub. Never even heard of this condition. I am the kind who ward off certain body signals as nugatory and would never relent to a doctor visit unless the situation is dyer. Make's me think twice about taking my health for granted. Thanks for sharing a great hub.
Janis Leslie Evans (author) from Washington, DC on April 08, 2014:
Thanks for stopping by, LisaB. We all hope and pray for the same.
Lisab on April 08, 2014:
Thanks for sharing POF/POI education and awareness through your writing. This brings continued hope that POF/POI will someday be more widely recognized by all including health professionals and in turn treatments and a cure may be possible.
Janis Leslie Evans (author) from Washington, DC on April 07, 2014:
Thank very much for reading and commenting. I'm so grateful you found it to be of help to others.
Consolacion Miravite from Philippines on April 07, 2014:
Such a highly informative hub, and substantial research was done to help readers understand more about the ailment. Great work!
Janis Leslie Evans (author) from Washington, DC on April 04, 2014:
Absolutely, DDE. Thanks for reading.
Devika Primić from Dubrovnik, Croatia on April 04, 2014:
An informative and very helpful hub such conditions sounds serious and should be more recognized with careful treatment.
Janis Leslie Evans (author) from Washington, DC on April 03, 2014:
Thank you for reading and the nice comment, MsDora.
Janis Leslie Evans (author) from Washington, DC on April 03, 2014:
You're welcome, Rebecca. Glad you found it helpful. Thanks for the visit.
Dora Weithers from The Caribbean on April 03, 2014:
The emotional impact can be devastating. Thank you for handling this difficult subject and for the suggestions on easing the pain. Very helpful.
Rebecca Furtado from Anderson, Indiana on April 03, 2014:
Thank you for this article . I will share it. I have a niece who had chemo for a brain tumour. She is in her late 20's . I was unaware this condition could be caused by chemo.