Living with Primary Ovarian Insufficiency - Perspectives from a Mom and Therapist
At 26 years old, I was diagnosed with Premature Ovarian Failure (POF), also referred to as Primary Ovarian Insufficiency (POI). The day I got my diagnosis, my life was turned on its head. I was utterly shocked and confused. How did this happen? I didn’t even know this could happen? What does this mean? It didn’t help that my ObGyn, (the Chairman of her department at a major University Hospital) was as perplexed as I was, “We’ll retest your blood, just in case this is all a lab error.”
Her measure of caution was understandable, as POI affects just 1 in 1,000 women under the age of 30 and 1 in 100 women under the age of 40. A second FSH level well in the 90’s confirmed that not only had my ovaries stopped working, but the hot flashes, feelings of fatigue, insomnia, and hair loss were not a figment of my imagination. More devastating than my health symptoms were the odds I was given of ever being able to conceive on my own (less then 5-10%) and the next sentence, “you can use donor eggs.”
Being the cat who loves to play with fire that I am, I have spent the last 13 years of my life learning how to live with POI. I have immersed myself in the world of fertility treatment and pregnancy, both professionally and personally. I’ve learned a lot of good things along the way about how to cope and recover from the diagnosis and I would like to share a few of the highlights here for the women out there like me.
Focus on Your Health First! POI is a major health condition. Like diabetes or thyroid disease, it is treatable with the right evaluations, medications, and lifestyle changes. POI is associated with everything from bone loss, other autoimmune diseases, loss of libido, and even dry eyes. You will want to find a treatment provider who is well versed in the use of hormone replacement therapies in young women, who will thoroughly evaluate you for other related health conditions, and who can help you explore your fertility options when you are emotionally and physically ready.
Find Good Support! Being diagnosed with POI can feel very lonely at first. There is a grief process that occurs when you grapple with the loss of fertility and the health issues associated with this loss. It also comes at a time when others are flaunting their fortunate fertility. Friends are getting pregnant with ease, invitations to baby showers arrive, and it can feel like everyone around you has a bump. Your feelings at this time are valid, and you deserve care and support at this time. Studies have shown that women with POI have an increased prevalence of depression and loss of self esteem. Ask your health care team for recommendations on infertility support groups in your area, and/or a therapist who understands the emotional impact of fertility issues like ours. Surround yourself with others who understand what is going on with you, who allow you time to process, vent frustrations, and emotionally heal. One good resource to turn to is the nationwide infertility support program RESOLVE, which has a wealth of web based information and local support programs.
Give Yourself Time! The diagnosis of POI usually occurs at a time when you’re on your quest to create your own family. Getting the diagnosis may feel like you have to “hurry up” even more. The truth is that this is a time to slow down. Take time to learn about your fertility issues and to educate yourself on your options. Be realistic about those options given your specific circumstances and related health conditions, and seek second opinions if necessary. Most importantly take time to be an informed health care consumer. Infertility treatment is expensive, time consuming, and emotionally exhausting. Before you start to spend money, be informed about treatments that are likely to work for you versus treatment that may be less fruitful. If you are choosing to conceive through egg donation, get good advice on to how to choose an egg donor, resources for finding suitable donors, and pitfalls in the ovum donation process.
- There is no one right path for creating your family. Both adoption and egg donation are great options but both have their challenges. One thing I can tell you with all sincerity, as a mom post-POI diagnosis, is that however your child comes into your life; you will love them no differently. You will worry and take joy in them to the same full extent that every other parent does. And they will love you as fully and as intensely as any child loves his/her parents. With Warmth and Understanding.
Anne Cheever is a Licensed Clinical Social Worker. Anne is both a mother and licensed counselor with an interest in women's health and mental health issues. She holds a masters degree from the University of North Carolina, Chapel Hill School of Social Work. Anne has clinical experience working with high-risk pregnancies and coordination of birth plans for surrogacy deliveries.