Three major cornerstones of female health are menstruation, pregnancy, and menopause. They’re all closely tied to the health of our ovaries, which release eggs and produce hormones like estrogen and progesterone.
For a smaller group of people (about 1 in 100 females under 40), they experience a condition called primary ovarian insufficiency (POI), previously called premature ovarian failure (POF). The word “primary” in POI means the issue is with the ovaries themselves. In POI, the ovaries essentially stop regularly releasing eggs or release very few. While it’s relatively rare, its effects can be significant.
This is a big deal because the ovaries are essential for reproductive health and hormone production. Think of them as the powerhouses of your reproductive system, and when they stop producing hormones, it can affect many aspects of your life.
When the ovaries aren’t functioning normally (or at all), it can impact your menstrual cycle and reproductive health.
This can lead to irregular or missed periods, and it can make it harder to get pregnant (if desired). This is often the case with POI, where the ovaries don’t produce enough reproductive hormones, like estrogen, or they may not release eggs (ovulate) at all.
However, POI doesn’t necessarily mean the end of fertility. Even with POI, some people may still experience occasional ovulation, and in rare cases, even get pregnant. In fact, studies have shown that 5-10% of those with POI can conceive and have a healthy pregnancy, even years after they were first diagnosed.
Although POI affects a smaller group of people, it still has a big impact on physical and emotional health. Knowing what POI is, how it affects your body, and what options you have can be incredibly important for managing your health.
POI used to be called “premature menopause” or “premature ovarian failure”, but those terms are outdated and inaccurate. They suggest that the ovaries stop working completely and forever, which isn’t always the case.
In addition, you can start experiencing menopause-like symptoms like hot flashes, night sweats, and mood changes. It can feel as if your body is being thrown into a different gear, and it can be tough to adjust.
Causes of primary ovarian insufficiency
The cause of POI can vary widely and getting a diagnosis can be tough to go through. It’s normal to feel a mix of emotions, from grief and anger to frustration and uncertainty. Here are a few factors that can contribute to POI.
Genetic factors
Some people with POI have genetic mutations, like Turner syndrome or fragile X syndrome. If you have a family history of early menopause or POI, or history of the conditions above, you might be more at risk. Genetic testing may be part of a workup for POI and can help identify these conditions, and understanding your genetic makeup can provide valuable insights into your health.
Autoimmune diseases
Some autoimmune diseases can make the immune system attack healthy cells or organs, including the ovaries. This can lead to inflammation and damage. Conditions like autoimmune thyroid disease, Addison’s disease, and various other autoimmune diseases are sometimes linked to POI. If you have symptoms that make you worry about POI and an autoimmune disease, it’s important to talk to your healthcare provider.
Cancer treatments
Chemotherapy or radiation may harm the ovaries, and in some cases may lead to POI. In those cases, the effects can cause a temporary pause in ovarian function or permanent ovarian insufficiency. If you’ve undergone cancer treatment, monitor your menstrual cycle to catch any changes early.
Infections and illnesses
Viral infections, like mumps or tuberculosis, can sometimes harm the ovaries, though this is rare.
Unknown causes
For many people (around 90%), the cause remains unknown. This is called idiopathic POI, meaning medical science doesn’t fully understand the cause. It can be frustrating to not have a clear answer. But focus on what you can control to manage the condition and find support.
Primary ovarian insufficiency symptoms
POI symptoms can be distressing and are similar to perimenopause symptoms because the underlying cause of declining estrogen is similar, but happening prior to age 40. The severity can vary, but here are some common signs to watch out for.
Irregular or absent menstrual periods
One of the first signs of POI is irregular periods (skipping a period or a longer length between periods) or periods that stop completely. This might happen suddenly or over several months. If your periods become less frequent or stop before the age of 40, it could be a sign of POI. Tracking your period and any changes can be valuable information to share with your healthcare provider. Missing a period for more than 3 to 4 months in a row should be evaluated by your doctor.
Hot flashes and night sweats
Just like menopause, people with POI can have hot flashes and night sweats due to changes in estrogen. These can be uncomfortable, disrupt your sleep, and leave you feeling drained.
Infertility
One of the most challenging aspects of POI for those who desire pregnancy is infertility. Because the ovaries no longer reliably release eggs, natural conception can be hard. For some, in vitro fertilization (IVF), often using donor eggs, may be an option. Discuss your fertility goals with your healthcare provider to explore all available options.
Mood swings and depression
Hormonal changes can cause psychological symptoms like mood swings, irritability, and anxiety. Some people with POI also have depression. This can be made worse by the challenges of coping with the condition. If you’re experiencing mood changes, don’t hesitate to reach out to a mental health professional for support.
Dry skin, vaginal dryness, and decreased libido
Low estrogen can make your skin and vaginal tissues dry, causing pain during sex. Using lubricants and moisturizers can help manage these symptoms, and your healthcare provider can recommend additional treatments if needed, like local vaginal hormone therapy.
Bone health issues
Estrogen helps keep bones strong. A decrease in estrogen levels can raise your risk of osteoporosis. For those with POI, this can lead to more bone loss at a younger age and a higher risk of fractures. Regular bone density scans and a calcium-rich diet can help protect your bones, and hormone therapy may also provide protection. Talk to your doctor about what’s best for you.
Diagnosis of primary ovarian insufficiency
If you’re under 40 and your periods are irregular or you haven’t had one for more than 3-4 months, talk to a healthcare provider. To diagnose POI, after discussing changes in bleeding, doctors usually do blood tests. These tests check for high levels of follicle-stimulating hormone (FSH) and low levels of estrogen.
FSH is a hormone that stimulates the ovaries to produce eggs. When the ovaries aren’t functioning properly, FSH levels rise as the body tries to compensate while estrogen levels are low.
Coping with the emotional impact of primary ovarian insufficiency
Getting a diagnosis of POI can be really tough, both physically and emotionally. A reduced ability to have children, having sudden menopause-like symptoms, and not knowing what the future holds can be very hard. It’s normal to feel a range of emotions, including grief, anger, frustration, and a sense of isolation. Here are some ways to cope:
- Acknowledge your feelings. It’s important to recognize and validate your emotions. Feeling a sense of loss is okay and a natural part of the process. Allow yourself to grieve and process your feelings. It’s okay to take time to adjust to the diagnosis.
- Seek support. Talking with a therapist, counselor, or support group can be incredibly helpful. Connecting with others who understand what you're going through can provide comfort and validation. Many support groups offer both in-person and online meetings. This can make it easier to find a community that fits your needs.
- Lean on your support system. Family and friends can be a great source of support, even if they don’t fully understand what you’re experiencing. Don’t hesitate to reach out to them for emotional support and help them understand how they can best support you.
- Find online communities. There are many online communities and forums where you can connect with others who have POI. These platforms can give you a safe place to talk about your experiences and find support.
- Find an expert in POI. Finding a specialist, like a gynecologist or a reproductive endocrinologist, who is well-versed in the causes and treatment of POI is crucial for accurate diagnosis, personalized treatment, and comprehensive management of the condition.
Treatment and management of primary ovarian insufficiency
While there’s no cure for POI, there are treatments available to help manage symptoms and improve your quality of life. Here are some options to consider in partnership with your doctor.
Hormone replacement therapy (HRT)
Hormone therapy can help with many symptoms of POI, like hot flashes, vaginal dryness, and mood swings. HRT may also help protect your bone health by reducing the risk of osteoporosis, cardiovascular disease, and dementia. A healthcare provider can work with you to find the right type and dosage of hormones to meet your needs. It’s recommended to replace hormones until the natural age of menopause (around age 50).
Fertility treatment
If you want to have children, fertility treatments like IVF with donor eggs may be an option. While getting pregnant naturally with POI is often tough, it’s not impossible. Some people with POI can still occasionally ovulate and get pregnant naturally. About 5-10% of those with POI can conceive and have a healthy pregnancy, even years after diagnosis.
So, if you’re not trying to get pregnant, it may still be a good idea to use contraception. If you do want to have a baby, there are options like assisted reproductive technologies that can help. A fertility specialist can walk you through the process and explain your options, including using a donor egg.
Options to support your bone health
Your doctor might suggest taking calcium and vitamin D to help keep your bones strong. Regular exercise, especially weight-bearing exercises, are essential to help maintain bone density. Early screening for osteoporosis is needed.
Psychological support
Therapy, counseling, or joining a support group can help manage the emotional effects of POI. Talking through your feelings and connecting with others who understand can make a big difference.
Stay informed
Staying informed about POI and its management can empower you to take control of your health. Reading books, attending workshops, and participating in webinars can provide valuable information and insights. The more you know, the better equipped you are to make informed decisions about your care.
Effectively managing POI is key to maintaining your health and quality of life. Regular check-ups with your healthcare provider are important to monitor your hormone levels, bone density, and overall health. Staying informed about the latest research and treatment options can help you make the best decisions for your health.
If you have primary ovarian insufficiency, remember you’re not alone
While the diagnosis can be incredibly challenging, it doesn’t have to define who you are or who you become. Having POI can be hard, but there are resources, treatments, and support systems to help you.
FAQs
What is primary ovarian insufficiency (POI)?
Primary ovarian insufficiency (POI) is a condition where the ovaries stop functioning normally before age 40. This leads to lower estrogen production and irregular or no periods. It can cause infertility and symptoms like hot flashes and mood changes.
What are the primary symptoms of POI?
The main signs of POI are irregular or missed periods, hot flashes, night sweats, and vaginal dryness. Other symptoms may include mood changes, trouble focusing, decreased libido, and infertility. Some people also experience osteoporosis due to lower estrogen levels.
What are some treatments for POI?
Treatments for POI focus on managing symptoms and preventing complications. Hormone therapy replaces estrogen (and progesterone if you have a uterus) and may help with symptoms, bone health, and overall health. Calcium and vitamin D supplements, along with weight-bearing exercises, can help with bone health as well. Fertility treatments, such as IVF with donor eggs, may be an option for those trying to conceive.
What’s it like living with POI?
Living with POI can be challenging, but you have options and support. By working closely with your healthcare provider, making some lifestyle tweaks, and finding good sources of emotional support, you can manage POI and maintain a good quality of life.
