I’m 28 years old, I was diagnosed with Primary Ovarian Insufficiency at 26 following a car accident where I broke my spine, pelvis and sacrum - my body stopped creating hormones, eggs were damaged and I can’t have children easily, etc to where I now need HRT to protect bone density.

My problem, I don’t tolerate progesterone at all. It’s been a year and a half of trial and error with different timings (cyclical vs continual), different dosages (100mg - 200mg), and I still feel absolutely awful. Normally just deal with the insane bloating that adds 10 pounds, but this most recent cycle has landed me in the worst depressive episode I’ve experienced and it’s all tracking with progesterone.

My other problem however, from a result of the car accident, I have hypertonic pelvic floor syndrome (my pelvic muscles don’t relax - excruciating painful and exhausting), so vaginal progesterone goes out the window.

I’m nervous about the efficiency of progesterone cream, and so exhausted that I don’t want to try other progestins. The IUD also makes no sense to me as my body clearly does not like any form of progesterone (I did trial the vaginal).

I’ve been looking into Duavee and am interested, but feel like my doctor isn’t going to advocate because my body is actually producing no progesterone.

My overall dilemma: I am not producing progesterone naturally, but I’m also severely intolerant. I don’t want to be on it at all, but understand its purpose. I don’t know what to do.

I feel like giving up, it’s been years of suffering and I’m just exhausted.

I’m 30F, found out incidentally I have POI a few months ago when I went to freeze eggs after a breakup, knowing my work covers $30k of fertility treatments. I was obviously very shocked and devastated, and it’s been a process dealing with this and coming off BC and figuring out what to do. I had been on BC for 15+ years and sort of hoped it was a fluke of labs being done while still on the pill. To be fair, my numbers DID get better off the pill, especially my estrogen, and I’ve been having a regular period and seeming to ovulate. Nevertheless, my AMH and FSH are still unfortunately very indicative of POI, and I want to explore what I can do in the moment.

If I wasn’t currently single, I’d probably TTC with a partner, but I don’t really feel comfortable being a single mom at this age. I don’t have qualms about donor eggs - honestly, I’d rather be a mom to a donor embryo with a partner than a single mom to a child of my own egg. I know chance of success isn’t great, but I want to see if it’s even worth it to try to retrieve any eggs.

Current numbers on CD2 on my second month off oral BC are .02 AMH, 39 FSH, 21 LH, 75 estrogen, .7 progesterone.

Hello everyone,

I want to share my story and would really appreciate hearing from anyone who has gone through something similar or has any advice.First of all, I got my first period when I was 13, and until I was 16 everything was completely regular and on time. Then, when I was 16, I lost my father. After that, my periods stopped. I went to many doctors, and when they checked my hormone levels, they said it was stress-related amenorrhea. They prescribed me birth control pills.I kept using birth control pills continuously and went to doctors regularly. But whenever I stopped taking the pills, my period wouldn’t come back. They kept telling me this was normal.When I was 22, I went to a very well-known doctor. He ordered the standard tests: FSH, LH, estrogen, and progesterone. Based on the results, they sent me for genetic testing, but nothing showed a genetic condition that would affect my ovarian reserve. Even though my FSH and LH were high, I was still diagnosed with amenorrhea.Everything continued like this until I got married. After marriage, my husband and I decided we wanted to try for a baby. But since I wasn’t having periods, I assumed I wasn’t ovulating, and unfortunately we were unsuccessful. At 25, I went to the doctor again. They put me on birth control pills to induce a period and then ran tests again. At that point, I started doing my own research, and everything pointed strongly toward POI ). I didn’t want to believe it at first—I kept wondering if it could be confused with something else. But my AMH level was 0.011, and that is something that cannot really be mistaken for anything else.I fell into a very deep emotional state. I cried for days. I didn’t want to live. I kept asking myself, “Why me?”Later, I found another doctor and underwent ovarian stem cell treatment. I used HRT for 3 months. At the end of those 3 months, my doctor told me to stop the medication and go for antral follicle monitoring. I went, but no antral follicles were seen. It has now been one month since I stopped the medication, and I feel like I’m back in that same dark place again. I don’t want to believe it, I can’t accept it, and I don’t feel healthy.

So I have a question How can I sleep faster🥲?

How do you deal with sleeping problems?

Life's hard and I hate poi/pof don't know what to do I feel lost fr

I do HRT I take 14 days utrogest and always to sprays estrogen lenzetto 1,53mg

Progesterone is like a lifesaver when it comes to sleep but in Generell im struggling to fall asleep faster nothing works not even breathing technique for 30 minutes.

I always open the window so its cold and I try to sleep faster and Idk why ut takes so long.

Today It was the worse I took accidently 4 sprays and my head started spinning my heart was racing liek Crazy and i couldn't sleep the whole night.

since 16 to now 22, my estrogen levels have been at 23-24pg/ml. i’ve had to explain what POI is to every single doctor i’ve had. they do one google search and tell me what i’ve known for years. from the depression and anxiety turning into alcohol and benzodiazepine use, from sticking on 2-3 0.1mg patches at once. i’d take xanax just to try and stop the heat flashes. now that ive been sober for 2 months, im realizing the only thing that gave me sleep relief was alcohol. i started clonidine this week and broke down crying after being able to go back in public and not instantly start pouring sweat from every pore on my body. one tiny pill already stopping an issue ive dealt with for a month straight. life is hard.

Hi all,

I am 39 and have been on HRT since 05/24 (started at a lower dose and increased over time) + 100 mg nightly progesterone.

I recently switched from my .1 mg patch that wasn't absorbing (my levels went down to 54 and I was having breakthrough symptoms) to a 1 mg divigel generic. I applied last night at 10 pm and tested today at 11 am. I still am having some symptoms, but figured it'd be higher than 54 because I've been losing a bit of weight easier (as if that's the only litmus test lol).

Well...I get my tests today. FSH is up to 26, LH is 19.5, and estradiol is <10!!! This was shocking to me and now hindsight, I have been waking up hot despite my AC being on nightly and my room being cold, waking often, having awful foot pain when I walk, and had a DEXA and lost muscle and gained visceral fat despite being active and prioritizing protein.

Has anyone experienced this? I suspect I need a higher dose and maybe I need two delivery systems (patch plus gel or mist), but I wanted to avoid OCPs and oral estradiol at this time unless nothing else works. I am just so defeated as I've been dealing with the HRT journey for a while and this just scares me tbh.

Any input is appreciated, thanks!

Hey all!
I got diagnosed 2022, but I haven’t until just 1,5 week ago been able to take in the diagnosis due to other trauma, survival stress and a great dose of denial and dissociation .
I’ve been feeling absolutely wrecked coming to terms to what this means for the rest of my life.
Right now I am very focused on my libido and how it’s just not really there and haven’t been for long.
It is for me an unbearable loss as I for the first time in my life since 24 have a loving, kind and amazing partner.
I am on estrogel 0,75 2 times a day and I take provera cyclical.
My life does not feel worth living like this.
Does anyone have a success story with regaining a sense of libido and sexual drive?
Hugs❤️

Hi everyone,
I’m 29 and my period has been missing since January. My doctor initially suspected PCOS because she saw cysts on my ovaries during the ultrasound. However, my hormone panel showed otherwise: my estrogen and progesterone were very low, my FSH and LH were completely normal (a clear 1:1 ratio, not the typical PCOS ratio), and my AMH came back low at 0.89 ng/ml. My ultrasound also showed a completely flat endometrial lining and a stagnant follicle stuck at 1.2 cm.

Looking closely at my lifestyle, it became obvious that the real culprit is Functional Hypothalamic Amenorrhea (FHA) due to severe restrictive eating and high exercise volume.
I started my recovery journey about 3 weeks ago (eating in a surplus, cutting out intense workouts). I’m already seeing great signs—my libido is up, I’m getting some twinges in my ovaries, my Oura ring showed a slight temperature jump (+0.2 °C), and I just found my first stretchy, fertile-ish cervical mucus today!

While I’m fully committed to recovery, my 0.89 AMH value really freaked me out since I want to have kids in about 5 years. I know that HA can temporarily suppress AMH levels because the ovaries are basically asleep.

Has anyone here been in a similar situation and seen their AMH level go back up after fully recovering from HA and getting their cycle back? I would love to hear some positive stories or timelines to ease my mind a bit.
Thank you so much! ❤️

Has anyone used a GLP-1 for weight gain from POF rather than HRT?
What was your experience?
I’m considering both.

hello, i hope y'all are doing well!

i was diagnosed with POI at 18 but medicated in 2023! while i'm on HRT (taking estradiol and medroxyprogesterone pill), i'm still struggling with symptom management, wellness and in general moving forward. it doesn't help that this condition's effects are compounded by my hypothyroidism as well.

i've had to drop out of university and also stop working as i couldn't adapt "normally" or "quickly" to what was needed or expected in these spaces. i find it extremely difficult to do normal activities (e.g. chores, eating, work) without facing fatigue, pain or brain fog.

i was wondering whether anyone has gotten accommodations for their diagnosis? i'm in canada and i tried once (and failed lol). i was thinking i should give it another shot but it feels like doctors don't consider it "bad enough" or as visible to diagnose.

i would appreciate any advice!

Hello, I am currently on 0.1 mg of estrogen twice per week (transdermal patch). I am taking 100 mg progesterone per day, and I recently started bleeding at day 10. I was wondering if I should up my dosage to 200 mg? My reproductive endo wanted 200 mg at first, but I told him when taking cyclical progesterone I experienced severe side effects. Should I message the doctor’s office to let them know to change it?

New acct but not new to Reddit - just separating the threads a little.

TLDR: 41 yo. Likely had POI since ~28, misdiagnosed as PCOS with no real follow-up or investigation. Now 41, learning that all along it was probably POI. Just got my AMH back. Undetectable. Not sure what I’m looking for besides maybe folks who also get it.

Full story:

In 2013 I started with a new PCP. I was super busy and fell out of the habit of going to docs every year since graduating college. My cycle wasn’t regular when I was a teen - I figured it was at least partly because I did gymnastics - but in my early-mid 20’s it had gotten fairly regular. Now it wasn’t and I brought that up to the doc.

She did the tests you’d expect. Results came back: FSH 155.8, LH 64.6, DHEA 599.2, Testosterone 54, TSH 0.77. She concluded it must be PCOS based on elevated testosterone and DHEA, blaming elevated FSH and LH on it too even though FSH that high is not PCOS. Noted in her notes numerous times that I didn’t have classic PCOS signs - was on the lower end of healthy weight, no excess hair in the typical places, etc.

Sent me to have a transvaginal ultrasound to check. Radiologist saw no signs of PCOS on the right ovary and couldn’t visualize the left. Said “further evaluation is suggested clinically”. Doc prescribed birth control (with no explanation as to what the purpose of it was to do besides to make my period regular) and sent me to a fancy breast cancer treatment center for them to confirm it was safe for me to take hormonal birth control with strong family history of breast cancer. They side eyed me a bit because I did not belong in a cancer treatment center. Something felt off.

No referral to an endocrinologist. No referral to reproductive specialists to discuss the possibility of freezing eggs. At that point in my life I trusted docs strongly, so if she said that’s what it was then she must be right.

The next part is on me - for lots of life reasons, I didn’t get back into good habits of seeing a doc yearly. Detail doesn’t really matter. I wasn’t regularly having sex and didn’t mind not having to deal with a period so I never did take the birth control. I thought it was just to prevent pregnancies and give me regular periods, neither of which seemed critical.

In 2021, I’m 36. No cycles pretty much since 2013/2014. I finally got myself back to a doc, who is in the same system as my previous one. Was hoping to switch to her as a new PCP, but she told me during our first appt that she was moving and this was her last week in my city and in the larger system. She gave me a work up including relatively basic bloodwork. FSH 104. She leaves me a voicemail (since she’s no longer in the system) telling me that my blood test is in post-menopausal range. I shut down a bit - we were all dealing with Covid still - and didn’t deal with it for a while.

Now, 2026. I’m 41. I finally have a new doc. Am on the “let’s figure out what’s been going on” train. She is fantastic and thorough. Orders blood panel to check all the things, refers to endocrinologist before the tests are even back, and now they are coming in. FSH 99.9, LH 37.9, DHEA 349, testosterone 35. Blood sugar is in the good range, cholesterol is a bit elevated.

This morning I got my AMH back and it’s under .015. Undetectable.

I knew it was likely. But seeing it right there and irrefutable is hard. Really, really hard. I wasn’t on track to have kids - no life partner etc - but on some low level I hoped I’d have an option to freeze eggs, and it looks like that door is firmly shut.

So that’s where I am right now. Mourning the lost possibility without knowing if it was even there. Deeply angry at the doc in 2013 who waved away the test numbers that didn’t fit her hypothesis. Frustrated at my past self for not questioning the doc’s conclusion when something felt off, not running the numbers past the (many) docs in my family, and most importantly for not going back for regular checkups in that extended period.

Not sure what I’m looking for here beyond some friendly shoulders because I’m definitely crying. Maybe insight into what to expect next. I know HRT is probably happening soon to see if we can prevent any further damage from the lack of estrogen for all of those years. I’m low-key hoping it might help me lose some stubborn belly fat that I now realize may have been a side effect of all of this rather than just gaining weight in COVID.

But mostly I think just getting confirmation that I’m not alone in all of this.

So there is apparently an estrogen patch shortage and it has been a mess trying to get my prescription the last few months. Because of this the brand I’m given is jumping around A LOT. Does anyone think this is a problem?

I don’t know why it makes me nervous lol. Most recently I was out on the one week long patch (hate it) and the patches I was given this month were huge white and thick instead of thin and clear and they made my skin so itchy. My next prescription to pick up says it needs to be refrigerated and I’m honestly afraid to pick it up?? I have no idea what I’m going to get. Also super annoying that because of the shortage they won’t give me a three month supply again so i have to fight and drive 1+ hour sometimes to find my prescription in stock

I was diagnosed with poi at 16 (as I’ve never had my period). I was on estradiol for a bit but I stopped when I was 18. Being infertile never bothered me as I never wanted to give birth anyways so I stopped. I’m 22 now and it’s been awkward when I go to the doctor’s and they ask when was my last period in which I reply .. I’ve never had one. I’m now learning more that having poi puts you at higher risks for osteoporosis and other medical conditions so I’m wondering if it’s worth getting back on estradiol for that.

Hi all, I have revised my recent poll to include the experience of trauma as an adult and in childhood. Both of which I have experienced myself, and as pointed out by other users this should be included as an option in the poll for clearer results.

Original post

I experienced a sudden trauma about 5/6 months before I became symptomatic. My doctor thinks it’s highly plausible that this trauma led to my POI. I also experienced quite a lot of trauma and neglect in childhood.

I’d be interested to hear if anyone here had a similar experience? There are so many environmental factors that could contribute to POI, and I know it’s complex. But I’m quite interested in the role of trauma in the development of POI.

If you feel comfortable doing so, feel free to share your experiences. 🩷

View Poll

Asking because I really don’t want to have to switch to birth control if I don’t have to

I experienced a sudden trauma about 5/6 months before I became symptomatic. My doctor thinks it’s highly plausible that this trauma led to my POI.

I’d be interested to hear if anyone here had a similar experience? There are so many environmental factors that could contribute to POI, and I know it’s complex. But I’m quite interested in the role of trauma in the development of POI.

View Poll

I have had POF for 20 yrs since I was 19 and have been struggling with high cholesterol for at least a decade in my adult life despite I have always eaten healthy. I have had to cut my saturated fat way back to less than 15g a day and lost quite a bit of weight. Now my cholesterol is okay but still on the high end.

I was looking up how Estradiol is made and turns out your body uses cholesterol to create estradiol with a few steps in between. So considering my FSH is probably still high despite being on hormones (cause they never test it and just go by symptoms) then it makes sense that my body is making extra cholesterol because it wants my ovaries to make more estradiol but they can’t cause they don’t work.

And it bothers me because I’m also hypothyroid and they test my TSH levels every 6 months to verify my medicine is right but no doctor asks to test my FSH to see if my estrogen levels are high enough for my body to function normally. It’s like they (doctors and the majority of medical professionals) don’t care about the uniquely feminine. I just thought this was really interesting and wanted to share/vent.

Anyone with painful breasts during period/ before and around ovulation? 🙄