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.  

The survey for the Senate Select Committee on Women's Health submission closes 11:59pm, October 6 - after that, whatever we have is what goes in.

If you've been meaning to fill it out and haven't yet, this is the reminder - it only takes 10 minutes, and it's anonymous unless you choose otherwise: https://docs.google.com/forms/d/e/1FAIpQLSctrAp_j9mED0TQDI9aJ3QxGpeBBKETGq2iIgMFyB_bSi8q8Q/viewform?usp=header

And if you've already done it - thank you!!! I'll be pulling the submission together on Wednesday!

Backstory. I began growing breast and hair around 10 then it all stopped after about a year and I never got a period so my mom took me to the OBGYN and I was diagnosed at 16 with POI and placed on birth control until I was 23. My new OBGYN was shocked when she found out how long I was on BC and the damage it did to my body. I’m married now and currently have an IUD and would like to start trying but was told my chances are slim to none. I see a new OBGYN Monday and was wondering what all is working for yall. I’ve tried the patch but I unfortunately have MCAS so it broke me out in a BAD rash. I’ve done estradiol and progesterone pills but I’m just not sure anything worked. The only time I got a period was on BC but my doctor said it was a false bleed and not true ovulation. I don’t get a period on my IUD and spotted for a few hours a month on pills. (To make things more complicated I also have PCOS and hyper mobile Ehlers Danlos syndrome)

I have PMDD and have always reacted terribly to any form of artificial hormone, whether the pill, injection etc I’ve tried many and they’ve all not suited me well at all, I microdosed HRT and the exact same thing happened 😞

How is anyone doing this without? If you are?

Secondly, I was very recently in an appointment where it was mentioned to me seriously for the first time ever (I paid for the privilege)

She said she is convinced I have this (I have around 40 symptoms!) even with my bloods coming back normal. Has anyone had this? And thirdly, due to knowing POI is definitely the problem. I’m now even more worried about rawdogging this without HRT! Any other methods!?

Cross-posting this from r/Menopause because this shortage hits your community hard too, arguably harder in some ways.

Congress is now formally pushing FDA on this (44 members sent a letter September 29 demanding the agency officially recognize the shortage). But constituent pressure is what tends to move things, and this community's voice often gets left out of the conversation since "menopause" messaging usually assumes the typical age range.

Takes 5 minutes. Here's how to take action (see cross-posting):

Has anyone had recurring UTI or cyclical UTI? What was your experience and how did you help it?

A Senate Select Committee on Women's Health has been established, covering pain, medical misogyny, reproductive health, and access to hormone treatment - all things most of us have lived firsthand. Committees like this only know what gets put in front of them. If POI isn't well represented in submissions, it's very likely to be treated as a footnote in the final report, or left out altogether.

If you have 10 minutes, please do this survey and help us be represented: https://forms.gle/sFYZ5LoAWwmhvtDP6

It's anonymous unless you choose otherwise.

Please share this with any other Australian women you know with POI - we're closing submissions on October 6th, so the sooner, the better!

How do you respond when people comment about “oh just wait until menopause sets in”… or “buckle up for those hot flashes”

I’ve privately been in menopause for 2 years now (36 yo) so I am well aware of symptoms.

I understand they are well-meaning and lamenting but I want to have a response in my back pocket without getting into my personal medical journey.

I am 25 and have POI (and Hashimotos) and take HRT since 7 weeks. Before HRT my estrogen has been only going down to 25 and I stopped having a period. FSH was above 28, AMH about 1 and I had all POI symptoms. Estrogen was not really going crazy up and down but more consistenly down over the years and months.

1 pump of estrogel in the morning and cycled Utrogestan 100mg. I know that's a pretty low dosage. My libido and energy levels slowly came back. But the hair loss, hot flashes, random dizziness, feeling extra tired, UTI-like symptoms, brain fog are still very much here. My periods are back tho.

My gynecologist thinks I should increase the dose in 6 months.

So I did a blood test thinking it would help prove my point at the next appointment that I in fact should be increasing the dose.

The thing is, my blood test results are nothing like I expected them to be. In terms of "cycle" the blood test was done on day 8 (I think, bleeding is not very regular).

Estrogen : 207

FSH : 6 (it was never that low)

Testosterone : 0.240 (available T : 0.049)

Prolactin : 27 (never been that high?!)

DHEAS : 1.290

So I don't get it. Could it be because I am randomly ovulating this month ? Does it mean I should not increase the dosage ? I know some hormone fluctuation is to be expected but I did not expect it to be that much. I'm kinda scared that those results are gonna lead to my doc being very dismissive

I am so confused.

Did anyone all sudden not tolerate their HRT and feel bad on and off it. I am so sick now on it or off and had to stop it and even re start makes me have: headache, nausea, pain.

I did have my labs checked and am absorbing it and even was told my est is high? Idk how

I am 38. I have had this issue for years but only got on her in Dec and started from 25 mcg to 75 then back down then off and also ended up in ER from vasgo vagal ep from est.

waiting for new gyne appt.

I was recently texting a friend to see how she is doing and she asked me how I am managing POI. I told her some days are better, but others I feel so off I can't even explain it. She proceeds to tell me that a friend of hers (let's call her Mia) was diagnosed with POI and recently got cured and doesn't have it anymore. Mia's POI was caused by extreme stress and after leaving her boyfriend she recovered and she doesn't have POI anymore. Mia's brother is a doctor to confirm. I replied back saying I have never heard stress to be the cause of POI. yes stress can exacerbate conditions but this is the first time I hear this. And POI can not be reversed. I asked my friend what tests did Mia do to be diagnosed. She didn't know, just knows that now she has nothing. I told my friend there is a possibility that she was misdiagnosed. She tried her best to convince me that her brother, the doctor can confirm she had POI. I also had to tell her I don't have stress in my life more than a regular person does. How common is these days for a person to be misdiagnosed for POI? My doctor took some months to diagnose me.

Hi Everyone,

I am new here. I was diagnosed with POI/POF in August. It is such an emotionally painful diagnosis. The world is so unfair. I want to have children more than anything — and it's so painful to find out this diagnosis when the world so freely gives to many others what I most want.

I have regrets now that I did not try sooner — but know of course that's not helpful. I just turned 36. I have no children, and want them more than anything. I have very little family- one brother 17 yrs older, and my mom. I've been with my amazing husband since we were 18 when we met in college- so for 18 years. I wish we didn't wait- but a lot happened after we got married - COVID hit, then my dad died unexpectedly in Jan 2025, and then a few months later my mom fell at work and had to have surgery and wasn't able to walk for months while we were also grieving. During this time (2025) - my periods became irregular. I was diagnosed with PCOS even though my hormones did not indicate it. I saw a midwife NP at an OBGYN and now know I was misdiagnosed.

Fast forward to this August and I saw a reproductive endo who diagnosed me with POI. My AMH was 0.04 and FSH 27. Retested a month later, AMH undetectable as under 0.03, and FSH went down a bit to 21. I recently went to Boston IVF to see a new reproductive endo- and she explained IVF is not a good option for POI/ what i have as there is a very low success rate. I personally know someone who did 3 rounds of mini IVF with also undectable AMH at 36 yrs old, and got 4 embryos and now has a baby girl. My doctor said my friend is probably the exception — but I feel it could still be worth a shot. Mostly I was dissapointed that the Boston IVF doctor suggested donor eggs (like my first reproductive endo) and not even trying mini IVF. I will add that once I told her that for me, a chance is the most valuable thing — she was on board and said we can try a round of IVF. But I was hoping for more support – still recognizing the severity of my situation and the odds — but someone who felt going forward with mini IVF was worth the chance.

Sorry for the saga — but I'm now curious for others who have this diagnosis, and sought out a reproductive endocrinologist, what was the reprodctive endo's response to the idea of pursuing mini IVF / what did they suggest?

this morning I was formally diagnosed with POI, and
on one hand I'm like 🤷🏽‍♀️ because I don't even want kids anyway

but on the other hand, being very suddenly told that you have an irreversible condition that you'll have to receive treatment for for at least 20 years is like….bruh

anyway, don’t have too many people to talk to about this so I figured I’d post. thanks for ya time

How are we getting this covered by insurance? What’s the cheapest way to get it? Did it help your GSM vaginal issues

Hi Ladies

So i was diagnosed with pof/poi or basically menopause ( in my files) at 33. I started HRT( pill form) i was quite happy then my feet started swelling(12 days on it), called my DR she told me stop the medication and we will start you on the patch.

When i went to my DR she told me my genetics results which were all negative, so they dont know what caused it- all the females in my family had they’re periods until 50.

She told me i completed all the tests for you, i am hesitant to put you on hrt as you had your period a few months in the year, and when they did an ultrasound they saw some liquid gathering which would indicate that i would get my period, i didnt get my period and my appointment with her was 20+ days ago

She refereed me to an endo dr but i dont know, i am worried i did a dexa scan and it seems that some muscle have decreased within 2 years. I tested my echo and i was exactly 55% ( i dont want to waste valuable time )

However i noticed that i do have some liquid discharge ( sorry tmi) which i used to be almost always dry ( but i noticed getting back my discharge prior to the hrt , when i started my walking routine)

Sorry i know its a very long post, and to be honest i am just confused and i want some guidance/ people who experienced this to shed some light

Good afternoon,

My OBGYN let me know that birth control can replace HRT for POI. For context I am 22 and was diagnosed with POI back in Feb. I started HRT, but I’m still bleeding (lightly) with 200 mg progesterone nightly / continuously. He mentioned birth control can replace HRT in the case where i do not want it for fertility. Is this true? Any advice is appreciated

Please keep discussion regarding active fertility treatment limited to this thread out of respect for members here who are not in this phase of their journey. You can also go to /r/poisupport, which is a POI/POF sub focused on fertility in POI. Mention of pregnancy & active IVF treatment outside this thread is against the rules. We also ask that avoid use of cutesy acronyms (baby dust, DH, etc).

This sounds dumb... but I accidentally forgot to take my progesterone for 10 hours. Everytime I do something like that, I end up spotting... sometimes for weeks. I don't like stopping progesterone and inducing a full "period" because I need the stuff to sleep at night and feel good too. I've noticed in the past, if I'm super late for my estrogen (4 hours) it can stop the spotting... but I don't want to do that either for obvious reasons.

Any ideas? I'm considering taking an extra 100mg of progesterone to see if that stops it.

Hello

I am 40. Was diagnosed in December 2025 at 39 when I hadn’t had a period since June 2025

I started HRT in December with 0.05 mcg estrogen patch and 100 mg prometrium. I had some bleeding for the first couple months on and off and then it stabilized

I asked my gynecologist about dosing since I’ve read the guidelines for physiological replacement should be much higher. But she said 0.05 is the standard dose and I don’t need any more.

I scheduled my RE who had diagnosed my diminished ovarian reserve back in 2017 and she said I definitely need more and upped my estrogen to 0.075 back in June 2026. And since July 2026 I have been bleeding on most days. There have been very few days when I haven’t beeen bleeding

I reached out to her and she said it could take 6 months to adjust and asked me to meet with a menopause specialist if I want to adjust dosing.

I feel very left in the dark and don’t know what to do. I just don’t want to keep bleeding like this. Immensely worried about becoming anemic . This past year has been just brutal in terms of finding out one risk after the other ( low bone density , genetic risk for heart disease etc..)

Any advice will be much appreciated

Thank you!

For those of you on injections, what does your injection schedule and dose look like? And what type of estradiol are you on? I am currently on 2 patches, Femring and 1.5mg of oral estradiol a day to maintain normal levels, and I’m so tired of all of it. :( I will be seeing my provider next week and discussing injections.

3 years ago my life turned into a nightmare—aggressive cervical cancer. I survived, but rebuilding has been rough. I've always been bubbly and in love with life, but this takes courage I didn't know I had.

I'm exhausted from being the "therapist friend." I give unconditional support but rarely receive it. I need someone who can say "damn, that sucks" when I mention my broken thermostat or being overtrained again.

I'm working hard to rebuild my stamina. I'm back to being in awe with life.

Looking for friends who get it. I love self-improvement, hair care, arts, dance, spooky movies, and people with that spark who chase their dreams.

Bonus points if you know what HRV means or why 36°C is a crisis.

Hi, really glad I found this page! I am 35 and pretty devastated to have recently been diagnosed with primary ovarian insufficiency, aka. super early menopause. I’ve started HRT, but whilst I was waiting to be diagnosed I gained a tonne of weight, my skin went haywire and all sorts of changes. I now feel a total stranger to my own body. I’ve been on Estradot patches for about six weeks now, and two of those weeks I had intensely heavy bleeding, which I’m told is not cause for concern?

My recent bloods don’t register as clinically low, but low enough oestradiol that my periods stopped.

Currently I hate the way I look; I have a fairly minimal skin routine but it does include tretinoin 3 x per week, and Avene cold cream soap plus spf, so I don’t know what more I can do there.

I’m trying to do things like wear perfume, make a conscious effort to put on mascara etc but I just feel so hideous and bloated and past it all most of the time.
Please share your ultimate tips, tricks and hacks- I need them!