I am excited to share information about a new, ongoing study that is collecting data and experiences with Hypothalamic Amenorrhea (HA) from all over the world!!! If you have had no period for three months or more, please consider signing up. The study will allow for better understanding of the prevalence, racial, and ethnic diversity of those experiencing HA, as well as addressing additional questions through the years. Please go to http://noperiod.info/reveal to sign up. More info below, but I wanted to put the link front and center so it doesn't get lost.
The criteria for joining the registry are:
Between 18-40 years old
Missing your period for 3 months or more (not pregnant or breastfeeding)
Diagnosis of hypothalamic amenorrhea or unknown (more below)
Access to the internet
NOTE: Your diagnosis could be hypothalamic amenorrhea (HA), functional hypothalamic amenorrhea (FHA), hypogonadotropic hypogonadism (HH), and possibly with the word "idiopathic" in front of any of those, which basically just means "we don't understand why it's happening".
If you don't know what your diagnosis is, the study team can send you a serum separator kit to get bloodwork done. So that's fantastic!
If you have been diagnosed with PCOS but you aren't sure... do fill out the eligibility survey. Particularly if you dont have bloodwork or your LH level is less than your FSH level, and you have possibly been underfueling/overexercising. (And go to http://noperiod.info/HAvsPCOS to learn more about the difference between the two conditions.)
If your diagnosis is Primary Ovarian Insufficiency (POI) (which can also be known as premature menopause), then this isn't the right study for you, but you could find others at the registry of clinical trials, if you're interested.
If you are interested in participating, please go to http://noperiod.info/registry to learn more (also at Registry of Very Early Estrogen and Anovulation due to Functional Hypothalamic Amenorrhea. - Mayo Clinic) and http://noperiod.info/reveal to complete the initial survey to see if you're eligible.
The study is being run by Dr. Chrisandra Shufelt and colleagues at the Mayo clinic in Jacksonville Florida. We recently interviewed Dr. Shufelt on our podcast, go to http://noperiod.info/all-in39 for the youtube video, or http://noperiod.info/allin to find it on your favorite podcast platform.
If you are someone who has followers with missing periods/HA, please consider sharing this blog post and/or the podcast so that we can get the word out about this registry to as many people as possible.
If you are unsure about diagnosis, I do offer a brief call to discuss diagnosis (and longer calls to help with recovery as well), go to http://noperiod.info/appointments.
Please comment with any questions you might have.