r/POFlife

POI Together Group

I started having symptoms of POI when I was 18 years old, but didn’t receive a proper diagnosis until my 30s.  The diagnosis was devastating, the medical experience was, and continues to be, difficult, and the whole journey was profoundly isolating.  

This past July, I created POI Together, a free, virtual peer-led support group for people diagnosed with Premature Ovarian Insufficiency.  It’s a space o talk about the physical, emotional, relational, and existential experiences of living with POI.  

I am a licensed therapist, and I share this because my professional training helps me create a safe, respectful space and guide our conversations with care.  In this group, however, I participate as a peer who shares this diagnosis, not as a therapist.  Through my work, I’ve seen how much healing can happen in a group.  POI Together is a place to support one another, grieve, share resources, and heal.  

POI Together is launching a new series of Monday meetings that will run from October through the end December.  The group will meet on Zoom from 2:30pm to 4pm (Pacific Time) on the following dates:

• October 12, 19, 26
• November 2, 9, 23, 30
• December 7, 14, 21

Additionally, I’m excited to announce a second series of group meetings, designed to be more accessible to people in various time zones. This group will meet once a month between the months of October and December, from 6pm to 7:30pm (Pacific Time), on the following dates (all Thursdays):

• October 29
• November 19
• December 17

You are welcome to join one or both groups.  Please complete THIS FORM and I will send you the Zoom link for each group that you select.  

If you have any questions, please email me at POITogetherGroup@gmail.com.  

Your voice matters!

44 members of Congress (Rep. Debbie Dingell + colleagues) sent a formal letter to FDA and HHS Secretary RFK Jr. this week demanding action on the estradiol patch shortage. You can read the full letter here.

Read their asks. They're almost word-for-word our own call-to-action last month from the original Reddit post in August:

• Officially add estradiol patches to the FDA's Drug Shortage Database. Right now it's not on there. This is the same gap we've been flagging
• A concrete timeline for when supply stabilizes
• Data on which brands/doses are hit the worst
• Whether additional manufacturers can be brought in to close the gap

Why this matters for us: The letter states plainly that Congress first notified HHS/FDA of this shortage in July, and as of this month, there's been no meaningful response. Congressional pressure alone hasn't been enough. Constituent volume is what tips agencies from "monitoring" to "acting."

One honest note: every signature on this letter is a Democrat. If your rep is not on this list, especially if they're a Republican or you're not sure, that's exactly why your letter still matters. This shouldn't be a partisan issue (estrogen doesn't check party registration), and a flood of contacts from every district, red or blue, makes it much harder to write this off as one side's talking point.

Write now. This still takes only 5 minutes of your time:

1. Find your rep: house.gov/representatives/find-your-representative
2. Find your senators: senate.gov/senators/senators-contact.htm
3. Copy/paste, fill in two blanks, submit:

Subject: Urgent — Estradiol Patch Shortage Demands Immediate Action

I'm a constituent whose health, or the health of someone I love, depends on estradiol therapy. This shortage has now gone unaddressed since July, when Members of Congress first notified FDA and HHS.

This isn't limited to a subset of patients. Any woman on hormone replacement therapy for menopause, surgical menopause, POI, or other issues is affected, regardless of political affiliation, geography, or who represents them.

On September 29, 44 Members of Congress sent a formal letter to FDA and HHS Secretary RFK Jr. demanding official shortage designation, a concrete restock timeline, and transparency on which brands and doses are hit hardest. I'm asking you to publicly support these demands, regardless of party.

I expect a substantive response describing what specific action your office is taking, and by when. Silence on a basic medication access issue that affects women's health and well-being is a choice I'll remember.

Sincerely,

[YOUR NAME], [YOUR CITY/ZIP]

If you have a couple of extra minutes, personalize the letter to make it your own.

If you sent a letter a month ago, send another. It doesn't matter what party you vote for. If we stand together, lifting each other up, we can make this happen. Share this with someone not on Reddit (or share on another social media platform) & let's make some noise!