At what age were you diagnosed?
Around the age of 26. I’d begun experiencing hot flashes and other menopause symptoms after stopping hormonal birth control to try for a baby. The flashes would occur dozens of times a day, were very intense and made me feel miserable. A blood test revealed a high FSH level (almost 100 mIU/mL) but then I was told everything was normal. I asked for a copy of the result to be posted to me. When I read them, I saw that my level was in fact ‘normal’ for a woman post menopause. A second test by my gynaecologist was also elevated so I was referred to the university medical centre. Here, further tests showed an undetectable AMH level and no eggs visible on my ovaries. I have a master’s degree in public health so I understand medical terms but those with POI who do not may struggle to get diagnosed. Patients with uncommon medical conditions end up becoming advocates for that disease. They face the burden of educating the doctor in their community who may have never treated someone with POI.
What were your options for having children?
Within minutes of my official diagnosis, my doctor said donor eggs would be an option. However, I knew I wanted to try IUI or IVF using my own eggs before moving on although I was told it would be a waste of my money because I had so few eggs. I tried a follicle-stimulating drug that proved unsuccessful but gave me the psychological closure I needed.
How did the diagnosis affect your vision of the future?
My husband and I spent time discussing our values and priorities as a couple. On some days, we weighed the pros and cons of each option available for building a family. On other days, I was in denial of the POI diagnosis and scheduling second, third and fourth opinions with doctors around the US. We considered remaining child free, adoption, and known egg donation. Ultimately, we decided to pursue anonymous egg donation.
How did the egg donation ‘journey’ work out?
Searching donor profiles for months was emotionally taxing and we faced disappointments. The first fresh embryo transfer with our chosen donor was unsuccessful, I developed hives all over my body. What’s more, my endometrium barely reached the minimum thickness to do the transfer the first and second time. So, we took a break. I did allergy testing, an endometrial biopsy and changed my medication protocol. A third transfer with two more embryos was successful: I became pregnant with twins, a son and daughter born at 29 weeks. They spent 52 days in the neonatal intensive care unit but are now thriving 10-year-olds. Two years later we transferred another embryo which resulted in our daughter, now aged five. Then, I became pregnant again a few months later, spontaneously.
Aside from fertility, what other health considerations are important for women with POI?
When I was diagnosed, fertility was my primary concern but it’s important to understand that all POI patients need additional medical care. Clinicians did inform me about the general health implications of POI and to screen for thyroid and bone density issues, as well as taking hormone replacement therapy. Mental health support should also be a priority.
How important is it for patients to be involved in guidelines?
It’s been an honour to serve as the patient representative to the ESHRE POI guideline committee. The patient perspective is so important. The doctors made me feel very involved in the process and were interested in my experiences and opinions. I feel proud that my feedback was all included in the final document. Since my diagnosis, I’ve volunteered to lead peer support groups and participated in state and federal advocacy events for infertility awareness. All these opportunities have been meaningful, but being a patient representative for ESHRE stands out. It gave me the opportunity to work with international POI experts on a document that will inform patient care globally.
What are the ESHRE guideline’s key messages for supporting patients?
Faster diagnosis. New criteria mean less testing (and less time) before an official diagnosis to ensure patients start treatment sooner. And to screen relatives. Talk with your doctor if there is a family history of POI, ask what testing is available, how often, and the options (if any) for fertility preservation. I have two younger sisters and my doctors recommended they should do fertility bloodwork every year. One does not have any of the same challenges as me and has a child. However, my other sister has similar issues to me. She was aware at a much younger age and has been able to freeze embryos with her partner ready for when they want to become parents. POI is a very isolating condition and patients need resources for medication, counselling, and support groups (in person or online).
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