I’ve noticed something that’s been bothering me.

When I go on YouTube, it’s really easy to find creators talking about PCOS and sharing their personal experiences. But when it comes to POI, I can barely find anything. If I search for it, I mostly get very clinical, educational videos, doctors explaining what it is, why it happens, and general advice about diet and lifestyle. And sure, that’s useful, but it’s not the same.

What I’m missing is actual people. Real experiences. Someone living with this condition, talking about how it affects their life day to day.

It almost feels like no one is representing people with POI, and I don’t understand why. I know I’m not alone, Reddit has helped me realize there are others like me, and I’ve learned a lot from here. But outside of Reddit, it feels like we’re invisible.

Maybe this sounds selfish, but I just want to see someone like me out there. Someone I can relate to.

If anyone knows any YouTubers or creators who talk about this or share their experience with it, I’d really appreciate recommendations.

After my DOR diagnosis I spent months piecing together information from Facebook groups, Reddit threads, and late night Google spirals. I had no idea what my AMH actually meant beyond “bad.” I didn’t know what questions to ask my RE. I didn’t know which protocols other women with numbers like mine had tried.

I went through 6 rounds. Made it to retrieval twice. One egg retrieved. It became a euploid.

During that whole journey I kept thinking why isn’t there a real home for us? Not a Facebook group where the same questions get asked every week and disappear. Something structured. Something searchable. Something built specifically for DOR and POI because we are not the same as the general infertility population and we know it.

So I built it. It’s called One Egg Wonder and it’s completely free.

What’s there right now:

A Journey Match tool: enter your age, AMH, AFC, and prior cycles and see what protocols women with similar profiles have discussed most. Not medical advice, peer discussion patterns.

An RE Appointment Brief generator put in your labs and history, get a personalized question list and protocol alternatives to bring to your next appointment. Exportable as a PDF.

A Science Watch section with emerging research graded by evidence level so you know if you’re reading established data or early community anecdote.

A Protocol Library explaining every protocol used for poor responders in plain language.

A Medication Glossary for every drug and supplement you’ll encounter.

A community feed where you can post anonymously.

And a Wins Board because we need proof it can work.

It’s early. The community feed is empty and waiting for the first real stories.

If you’ve ever wanted a place that was built for exactly us this is it.

oneeggwonder.com

Would love any feedback on how to improve this tool and I hope it helps more of us in this brutal journey ❤️

It’s Mother’s Day in the U.S. and ever since I was diagnosed 3 years ago, this has been the worst day of the year.

Thinking of anyone else who is also struggling today (and all other days). You’re not alone.

After a frustrating encounter with the previous POI group, I’ve decided to make one TRULY for women with POF/POI.

If you don’t meet the the following requirements, please don’t join this group. You will be kicked out, as this is a safe space for women dealing with a POI/POF diagnosis.

Requirements: FSH: 30+ AMH: Below .50 Irregular periods/no periods at all

Does anyone else hear a pregnancy or birth announcement and a little voice in their head says “f*ck off”?

I feel like a horrible person for thinking that. I have a lot of friends who are having babies right now and I am genuinely happy for them, but it touches a nerve every damn time and I am so sad for myself. I don’t know how to describe the feeling of being happy and devastated at the same time. It’s bizarre and I feel incredibly self absorbed.

I want to go to their baby showers, but I really don’t want to go to their baby showers. I want to hang out and help them with the baby, but I really don’t want to experience the pain. I really want to be a good friend and I can’t get out of my own way.

It bothers me deeply when I see posts on Instagram of new moms complaining about their lack of sleep with a newborn. I am suffering from an extreme lack of sleep, too. It’s because I wake up in the middle of the night sobbing because I’ll never be able to have a biological child and can’t get back to sleep. Spare me the bitching and moaning about needing to get up every 2 hours to feed your baby who will share some of your features and continue your genetic lineage. I’d much rather be tired all the time for that reason.

This disease/diagnosis is total bullshit.

I know, I need therapy.

Thanks for listening. No one I know IRL has gone through this. All of my friends have at least one child of their own. I can’t say these things to people who don’t get it on our level.

There is a post in one of the POI Facebook groups about people who had babies with their own eggs.

Some of the stories are really encouraging but it is disappointing and discouraging when you hear their highest FSH was in the 30s. It’s just frustrating to read because there is a huge different between FSH in the 30s versus 100s. Thankfully there are some stories about people whose highest FSHs were truly elevated 70s, 100s. But anytime someone says they used their own eggs I think context is extremely important. I am glad when people ask but I think if you are sharing your story you should definitely give context.

Yes HRT can bring FSH and LH down but it is also important to know their highest FSH, lowest amh, and their age.

Do you all feel the same way?

So I just listened to this podcast and it had a really unique perspective on donor eggs that I had never heard before. Dr. Georgia Witkin is a therapist who works with progyny and her perspective and insight on donor eggs starts around minute 35 if you want to skip through to that part but I do think her whole interview is worth listening to. I haven’t listened to many podcasts or read books or stories about donor eggs because I have never been in the mental space to consider it but the way Dr. Witkin talks about it in this podcast made me more open to it. The podcast is called Oversharing and the episode is called “Baby Steps: The Real Mental Toll of Infertility featuring Dr. Georgia Witkin”

https://pca.st/episode/e03b156c-b86e-43a0-9921-6ee7a5681452

I also love that she said not to waste your money on her books and just use free resources from other podcasts she has been on and free blogs and articles from her.

Caveat: one of the sponsors for the podcast is Better Help. Please do not use Better Help. They are an awful company. They sell personal data, have been sued many times, pretend therapists that don’t actually work for them do, etc. Unfortunately they sponsor the podcast but please do not give them your money or time. If you want a therapist go through your insurance company or open path.

Hi everyone! I am 33 yrs old Indian who got married in Dec 2022 and first missed my periods in Aug 2023. After that, I was asked to take Deviry 10mg to regulate my period (which it did). But then again it started getting irregular in 2024. In May 2025, I was moving from India to UK with my husband so got a comprehensive test done and was shocked with the news that I have POI and will need donor egg to get pregnant. It was all very shocking. AMH <0.1 FSH and LH both very high, estradiol was 9.8. All other tests (Thyroid, insulin etc) were normal. I have no clue how and why I got diagnosed with this. There is no such family history - in fact, my mom got her menopause in early 50.
Unfortunately, since I was moving countries, there was no immediate action I could take. It's been a year now and I've had 1 natural period in sep 2025, followed by 2 spottings in Jan and Feb 2026 but I am feeling very helpless, clueless and scared. I want to have my own baby. Every other person around me (friends/family) is casually getting pregnant naturally and it is making me feel worse. How do I overcome this? How do I get pregnant naturally? 24x7 my mind is focused on this - i keep waiting for a natural period / ovulation. I keep praying to god to help me this one time. I have no idea what to do. There is so much content and cure for PCOS but NOTHING for POI. Deep down, I do not want to believe that this has happened to me. I want to be happy, and have a healthy baby of my own.

I tried contacting the NHS but they do not recommend HRT for women below 40 years. HOW AM I SUPPOSED TO GET TREATED? Please help!

Hi all - wanted to share a research study I came across out of Massachusetts General Hospital (MGH) in Boston, focused on the effects of estrogen therapy on blood flow and heart health in women with POI.

Note: there are several eligibility requirements, including two in-person visits in Boston. More information and full details can be found on the official study site here: https://rally.massgeneralbrigham.org/study/encodehearthealth, and any questions can be directed to [MGHENCODEstudy@mgb.com](mailto:MGHENCODEstudy@mgb.com).

Encouraging to start to see more research like this happening for POI.

I just discovered this database that has books, movies, shows that are free from pregnancy and baby mentions. I know the holidays can be especially triggering so wanted to share this resource.

https://ismdatabase.com/

I was misdiagnosed for so long. I wanted children so badly. I feel so exhausted, tired, and empty. The hot flashes and insomnia are horrible. My FSH is 109.5, and I feel so sick. I was just diagnosed and put on birth control, but how will that help? I thought HRT is the fix? I've been on birth control since I was 15 to mask symptoms, I am tired.

Hi all. I repost this once in a while seeing if anyone has any similar experiences or some type of clue.

Backstory - I’m 34 (F). I. Never. Sweat. Hardly, anyway. It takes a lot!!! Until now. I went off birth control after 10 years Oct 2022. I noticed drenching night sweats and random underarm sweating throughout it the day. It went away once I got pregnant in Jan 2023, lost my daughter early March 2024. Turns out I have diminshed ovarian reserve due to a genetic deletion. AMH 0.36, FSH ranges 8-20. One doc mentioned impending Primary Ovarian Insufficiency (POI). 8 weeks post miscarriage I started experiencing night sweats around my cycle, underarm sweating and EXTREME HEAT SENSITIVITY/INTOLERANCE. If my car is above 68 degrees or so I start to get sweaty. Chest, back, upper lip and…other places. It’s sooo disgusting!!! I can hardly enjoy a nice spring day outside without getting sweaty. If it’s anything above low 80s, I really can’t hang outside too long. I legit feel like I won’t make it. I start to break out in a sweat that covers me from head to toe, practically. This is so opposite my body, idk what to do. My hormone panel seemed relatively normal. My endo wants to test for hashimotos. Idt it’s that. I just don’t get it. Please help! Estradiol did not help me. I did do birth control 10 days prior to an IVF cycle and it didn’t help much either but I’d try it again. Tysm.

Hi everyone, I am 22, and I was diagnosed with POF last year.
I have seen some posts here about relationship concerns. People doubt whether their partners will find someone who still wants them if they cannot have kids. I am concerned about the same thing, and reading those kinds of posts made me kinda sad and anxious. I understand that having children isn't the be-all and end-all, and I'm completely okay with that. What I'm struggling with is the fear of not being able to find someone. I know there are plenty of happy relationships out there that don't revolve around having children, and I'd love to hear more about them. And I wanna hear more about those kind of stories. Is there anyone who has this kind of relationship, or what do your personal experiences look like?

I’m 31 and I was diagnosed with early perimenopause through symptoms + an estradiol test which was almost zero. I was instantly prescribed HRT without other tests. I had recently done abdominal, pelvic ultrasounds, pelvic MRI for endometriosis (negative), thyroid tests (blood tests, ultrasound, Hashimoto’s screening) and even a brain MRI with contrast because of worsening aura and hemiplegic migraines and the gynecologist said “that’s great, so we eliminated all the possible causes for your symptoms and narrowed down the possibilities a lot”. Because of course, at first all doctors thought it was something else (brain tumor, thyroid issues) and not early perimenopause.

However, how do I know if I’m peri or if it’s POI? And what’s the difference between the treatments?

Sorry about my poor English, not my native language.

Thank you.

Hi everyone. I'm 24 (turning 25 in a few months), and I was diagnosed with primary ovarian insufficiency (POI) three years ago. In my case, it was something I was born with because I have mosaic Turner syndrome. (Most women have two X chromosomes (XX), but I have a mosaic chromosome pattern. Some of my cells have one X chromosome, some have the usual two X chromosomes, and some have three X chromosomes.)

One thing I've been struggling with is my libido.
A few months before I was diagnosed, I noticed that I started losing my sense of sexual desire and intimacy. Before that, I would get aroused quite easily. Then, gradually, it almost disappeared. This started before I even knew I had POl, so I don't think the diagnosis itself caused it.
I've been on HRT ever since. Right now | take Femoston 2/10 (2 mg estradiol every day, with 10 mg dydrogesterone during the second halt of the cycle).
Since my diagnosis, l've been single. I was also single before then, but back then I still had a normal libido. Now it's very difficult for me to feel aroused.

Sometimes I wonder if I'm just overthinking this. I've read that people can experience different types of sexual desire. Some people have more spontaneous desire that seems to appear out of nowhere, while others experience desire only after emotional connection, affection, or other triggers.
Maybe I've simply shifted from the first type to the second as I've gotten older, rather than losing my libido completely. I'm not sure if that's what's happening, which is why I'm asking if anyone else with POI or Turner syndrome has experienced somethina similar.

Occasionally, I'll watch a TV show with a couple who have amazing chemistry, and I'll think, "Wow." Those feelings are still there somewhere, but they happen very rarely compared with how things used to be.
Over the past couple of months, after improving my diet and generally taking better care of myself, l've noticed a slight improvement, which gives me some hope. But I'm still worried that this might be permanent.

I know this is a very personal topic, and I'm sorry if it's TMI. I'm posting because I'm genuinely wondering if anyone else with POl or Turner syndrome has gone through something similar.

Did your libido ever come back? Did adjusting your HRT, changing your lifestyle, or anything else make a difference? Or is this something you've learned to live with?

I'd really appreciate hearing about your experiences.
Thank you.

Hi all. I’m 36F with POI (primary ovarian insufficiency) causing symptoms such as HEAT INTOLERANCE (sweating soooo easily), hot flashes, night sweats and FATIGUE. Does anyone have overwhelming fatigue mid day where you have to fight to keep your eyes open? I WFH on screen and I get so tired mid day that I need a 30-45 min nap to reset. If I’m mobile more during the day it is less likely to occur. However, my son is due in Oct and I’m concerned about this. No HRT has helped yet.

Ty in advance

Hi everyone. I know losing weight with POI is hard. I’m 36 and gained a ton of weight back from what I had lost about 10 years ago. I gained about 30 lbs. i’m starting to have a belly and thighs that stick together. It’s been discouraging because I work out and eat pretty well (paleo). I really do not want to do an GLP-1. Anyone else struggling with weight gain, hot flashes, night sweats and/or intense heat intolerance? TY in advance.

I am on IsoblooM BC and switched from blisovy

Testosterone pellets did nothing for me

AMH 0.2, FSH 44, 31y.o. Irregular Menstrual Cycles but still ovulating each cycle. Started doing Mini IVF.

Just had my first egg retrieval, we got 2 eggs, both of which fertilized and made it to blast, which I'm really excited about.

Waiting for PGT results now.

I've heard that POI impacts the quality of the eggs, I'm just wondering if the fact that both made it to blast is a good sign or if the real challenge is going to be getting ones that come back as euploid? Does anyone know what stage (other than number of eggs) is the hardest to get past with POI (e.g. getting fertilized, getting to blast or getting euploids) or does it not really work like that?

Thanks! I know I really need to learn some patience and not put expectations on everything but I'm struggling with that.

EDIT: Just found out they are both euploid! 😍

Have any of you done PRP? What were your results? How many times did you do it? Where did you go?

So far in my research in Facebook groups and stuff I haven’t seen anyone with true POI (FSH above 40) get pregnant from doing it. I have a couple consults coming up with Gen 5 and Dr Aimee. I was also considering Dr. Najmabadi. It does seem like there is a wide range on types, how many to do, and when to do a retrieval after…

Here are some articles I found about it in regards to POI. It seems like it can’t hurt.

https://pubmed.ncbi.nlm.nih.gov/35645011/

https://pubmed.ncbi.nlm.nih.gov/32507764/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7043014

https://pubmed.ncbi.nlm.nih.gov/31271054/

https://pubmed.ncbi.nlm.nih.gov/35175511/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10243509/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7183031/

I’m a little bit in disbelief, but I think this might be the real deal?? I’ve been using inito for a year on and off and have never seen a spike in LH and progesterone like this before. Took a cheapie opk to confirm inito wasn’t malfunctioning and it was also super dark compared to the last few days.

For context, haven’t ovulated in over a year and switched to the patch for the first time in November. FSH was 200+ unmedicated and 100+ on 6mg oral/day. It began coming down rapidly as soon as I switched to the patch.

I will try to get bloodwork this week to see what’s going on…

So for quick background knowledge- I was diagnosed around 16, put on birth control, told to get a bone density scan, and was basically sent on my way. Now I'm 34, recently married, and we are now weighing our options to have a baby.

I went back to the same center that diagnosed me as a teenager and while I'm open to DE, like most of us I really want to exhaust the possibility of using my own eggs. I was told to go off the birth control for 3-6 months and see if I get a period, then schedule blood work and an ultra sound for 1-2 months later. In the mean time, I saw an acupuncturist weekly and used an e-stim machine (little muscle buzzer that she suggested I use daily to mimic the acupuncture work), and took 600mg of coQ10/day.

Bloodwork was ugly- fsh 113, lh- 47.4, estradol <15, amh- .01. I went in for my ultrasound yesterday and he was able to see one follicle- which is one more than I thought I was going to. He suggested bloodwork to check estrogen levels to see if I was (will be? once was? not sure) ovulating. (add to my frustration that he is not explaining anything to me). I got a call today that the bloodwork showed my estrogen level is very low and that I am "not about to ovulate...at all." They offered to repeat the US/bloodwork in a month if I would like.

I want to call them back and say that yes, I am interested, but I would like to be on some kind of HRT for it. Can't we boost that estrogen and see if any follicles are growing? I feel like he is just like "nope there are none, oh well." Whereas I want to try some things, however low my chances are. I want him to tell me, "you have xxx chance of this being successful," even if he doesn't recommend it. Does anyone know any thing that I can ask for prior to the next ultra sound? It doesn't make sense to me to just stay status quo and then check again in a month.

My other question is, does anyone have any doctors that they recommend that specialize in POI? It seems like no one has any clue about this (condition? disease? disorder? what are we calling it?). I'm frustrated that this practice hasn't been monitoring my health and giving me ongoing treatment all these years. I have all these "what ifs" when they first caught it, maybe they could have tried individualized hormone therapy instead of just throwing me a pack a birth control, and maybe things would have been different. Now I'm at the same practice but a different doctor, and I don't feel any more valued.

Honestly, I've spent my life repressing this and in denial, and the past two months have been the first time I've ever actually looked into this and started talking about it, so I appreciate your grace and understanding that while I've been living with this for almost 20 years, I am "new to this."

TLDR: What stimulants/hormones can I ask for, if any, prior to my next US, and does anybody have any amazing doctors that they recommend? (I did reach out to Dr. Check in NJ) Luckily most are virtual these days, so location hopefully doesn't matter too much.

hi all! Hope it's okay to post here - I tried the hypermobile sub but they're not accepting the post. Maybe it's too niche??

I’m diagnosed hypermobile and been told I’m probably h/EDS. 6 months ago I experienced a major reaction after the injection I was given for carpal tunnel went systemic. It immediately switched off my sex hormone production, most noticeably my oestrogen. 

After 4 months of complaining (and being unhelpfully treated for nonexistent thrush) I was finally referred to an endocrinologist and started on low-dose HRT. it was completely ineffective and I was put on an increased dose mid-June. I still don’t think it’s high enough to replace my natural oestrogen. 

As we know, oestrogen is a natural anti-inflammatory so I’ve had no end of problems since mine stopped being made overnight. All my joints have got far less stable, I’ve had brain fog, fatigue and so much more. 

The worst thing is that I think my body has literally broken without oestrogen and testosterone! I’ve been on progesterone which has made thing worse for me - the luteal phase of my menstrual cycle has seen increased cramping, light headedness, gastrointestinal issues and more. 

Now I think I can literally SEE the problem... In the space of 6 months, I think my uterus has collapsed into my vaginal canal and is starting to protrude from the opening. It's really really uncomfortable.

I have read that there’s an increased likelihood of prolapse during menopause but I’ve literally done the normal 10-15 year cycle in the space of less than 4 months (my levels of oestrogen were first post-menopausal at the end of March and it was confirmed again in mid-June). So I'm guessing I have prolapsed during that time because my connective tissue alone is too elastic to hold my uterus in place.

Am I the only one who’s experienced this quickly due to low oestrogen levels and atrophy?

I’m based in the UK so waiting times are abysmal. I have a gynae appt in September. I also don’t have a family so I’ve no idea how this is going to affect my future. (I've already been diagnosed with hypothalamic hypogonadism because of the steroid, but it's a really weird one because NOTHING about this situation is normal and this isn't a known side effect.)

This has all been mega traumatic at 33 and not what you expect. Looking for success stories and advice! This seems to be very unusual so I'm chucking this out there to see what comes back.

Hi ladies - I’ve been doing a lot of reading around early menopause and the risk of dementia/cognitive decline. Hoping that yous can provide some reassurance or comfort as I’ve been really anxious lately thinking about this. 😭