About POI
What is POI?
When the ovaries stop working properly before age 40, doctors refer to it as primary ovarian insufficiency (POI). In most cases, is not clear why this happens. In people with POI, both of the following occur:
- The ovaries stop releasing eggs (“ovulation”) or release them only intermittently.
- The ovaries stop producing the hormones estrogen and progesterone or produce them only intermittently.
What causes POI?
- Genetic causes (Turner syndrome, Fragile X syndrome, Other chromosomal and genetic causes)
- Toxic causes (ie. chemotherapy)
- Autoimmune causes
- No known cause!
POI Symptoms
There are a wide variety of symptoms that will vary person to person. Symptoms can include menstrual and hormonal changes, infertility, and emotional symptoms.
Menstrual symptoms – Women with POI will often stop menstruating , or they will have less frequent periods. Some women with POI caused by a genetic or chromosomal abnormality will never start menstruating.
Symptoms caused by low estrogen can include:
- hot flushes
- night sweats
- vaginal dryness
- pain during sexual intercourse
- sleep disturbances
- mood changes
- poor concentration
- stiffness
- low libido
- dry eyes
- change in urinary frequency
- lack of energy
Resources
- A lot of the information on this page is from uptodate.com: POI Beyond The Basics
- Video and article about overcoming struggles of POI diagnosis: Kelly McLay, Global Marathoner Who Went Through Menopause At 24
- Book recommended by a POI support group participant: The Complete Guide to POI and Early Menopause Paperback (amazon link)
POI Management
What to do if you’re sad/angry/confused about having POI?
Finding out you have primary ovarian insufficiency can be upsetting.
Go easy on yourself. It’s ok to cry. It’s ok to scream. It’s a really emotionally difficult diagnosis and can take a long time to accept and to heal.
- You may want to get support through counselling.
- Join an online peer-support meeting to connect with other women going through POI. It’s very reassuring to know that you are not alone in going through this! View upcoming meetings!
- Although it can be a tough subject to talk about with friends and family, opening up to trusted people you’re close with can be very helpful.
How to find a doctor that can help you with HRT?
- List of doctors that specialize in menopause and may be helpful in prescribing HRT: https://portal.menopause.org/NAMS/NAMS/Directory/Menopause-Practitioner.aspx
- Virtual doctors that specialize in menopause: https://www.joinmidi.com
About Hormone Replacement Therapy (HRT)
One of the main goals of POI treatment is replacing the estrogen that the ovaries have stopped producing. That’s important because estrogen is vital to certain normal processes. The bones, for example, need estrogen stimulation to stay strong and resistant to fracture. Without estrogen, people with POI are at risk of developing osteoporosis. There is also evidence that a lack of estrogen before the age of 45 years can increase the risk of heart disease.
Estrogen comes in many forms: a pill, a patch that is worn on the skin, gels or sprays applied to the skin, or a ring that is inserted into the vagina.
Most people cannot take estrogen alone; they must combine it with progesterone to prevent a condition that could lead to overgrowth of the uterine lining and possible cancer of the uterus. People who do not have a uterus (ie, have had a hysterectomy) can take estrogen alone.
How does POI affect your health
- Infertility – as POI is a condition where the ovaries stop functioning properly before the age of 40, the chance of conceiving naturally is significantly reduced.
- Bone, heart and brain – POI is associated with reduced bone mineral density; you may be at increased risk of bone fractures later in life. POI is associated with an increased risk of developing heart disease. POI may have an impact on your memory.
- Dating/sex life – The combination of infertility, menopausal symptoms, and lack of energy may result in a significant impact on your dating life and or relationship with your partner.
POI and Fertility
Can women with POI still get pregnant?
Yes. Although POI affects your fertility, it is still possible to get pregnant. If this is something you are considering, it’s best to ask for a referral to a fertility clinic sooner rather than later so that you can do some baseline tests to get a better sense of your specific situation.
Getting pregnant without any special treatment – Since many women with POI still may have some ovarian function, especially if diagnosed earlier on when the ovaries are just beginning to slow down then it is still possible to get “spontaneously” pregnant. The number that is often quoted is that between 5 and 10 percent of women with POI are able to conceive and carry a pregnancy without any special treatment.
Fertility treatments – However most women with POI need to use fertility treatments to get pregnant. Whether you are able to have a child with your own egg or a donor egg will depend on your specific situation: age, AMH levels, FSH level and AFC.
If you’re curious about IVF, here is a tool that helps estimate odds of success. However note that while it does take into account your age and AMH, it doesn’t take into consideration your FSH or AFC which can drastically lower your odds of successful IVF treatments: IVF Calculator.
Another interesting tool is the IVF Hunger Games Database in which thousands of reddit users have entered in their details and their IVF results.
Pregnancy with a donor egg
This is an increasingly common fertility treatment option. It’s when eggs are collected from another woman, fertilized with sperm, and then placed into the uterus of the recipient.
- Article on parents.com: I Used an Egg Donor
- Donor Eggs Epigenetics: Will The Baby Look Like Me? (2023)
- Will I Regret Using Donor Eggs? The Psychology of Egg Donation (2023)
- Support group for Canadians: Donor Conception Canada
If you know of a resource that might be a good addition to this page, or if you have any questions about this peer support group, please email info@POIsupport.com.