r/POFlife

I just watched a video of a perimenopausal woman absolutely going through it due to menopause symptoms. It made me think about how I get so down on myself for not having energy, getting angry, having wrinkles, and weight gain. I’m 36 and been going through “the change” since I was 24. I don’t think people realize how much our bodies endure during this time. It made me feel a bit less guilty to think about how somedays feel like an uphill battle! I hope you all are kind to yourselves today. ❤️

Does anyone know how long this will last??

Hi, I was diagnosed with Pof for some years now because of endometriosis and surgery and since late 2025 with early menopause (no period, hot flashes, all the symptoms).

My gyno put me on combi HRT pill (Climaston 2mg/10mg). The first couple of months I was better, I slowly got a little bit of energy back, no hot flashes. But I started having a longer and longer "periods", heavy and painful.

So after 6 months of this, I became anemic and I asked my gyno for another treatment. She told me to go on another pill, called Tibolone.

I started this pill 3 weeks ago but I'm felling horrible, I'm continually bleeding, joint and muscle pain and so much fatigue.

I tried to contact her but with no response, I stopped the Tibolone as I was feeling really badly.

What do I do now? She mentioned at my last check up that if Tibolone is not ok, I should try Climaston 1mg (so the lower estrogen dose).

Anyone had a similar experience?

I live in France and may be different than the US or other countries...but still I would love some perspective from others.

Thanks

Hi,
I was diagnosed with POI at 23 years old. I started HRT 2mg daily and cycle progesterone 200mg in monthly.
I noticed for 3 months straight I had period like symptoms and bleeds without introducing progesterone. No REI can tell me if this is a period or not. I was told “you could be ovulating, but we don’t know.” I then had a few months with no bleeding unless I introduced the progesterone.

Has anyone had experience with this? Anything would help. I feel lost in this diagnosis.

I haven’t talked about this to pretty much anyone. It’s always on my mind and I found this group and thought maybe someone here could understand.

Let me start from the very beginning. I have always had irregular periods. I have had huge ovarian cysts and horrible periods since I was 12. They always told me I would never be able to conceive. Fast forward to 2015, I end up pregnant. I had my first in 2016, and besides pre-eclampsia, I had a very healthy pregnancy. Delivery was another story. Fast forward to 2018, I get pregnant again, and besides cholestasis, I had another healthy pregnancy and delivery. I was over weight during all of this and after the birth of my second, my periods basically stopped all together.

I went about two years without a period. None of my doctors seems concerned or worried. I would go a few months without a period, and then get a really heavy, horrible period every once in a while. Fast forward, I get bariatric surgery in September 2024. After my surgery I get a period in October, November, and December. All normal, on the same day each month. I think the surgery fixed whatever was wrong. January, I’m extra tired, my boobs are sore and I start wondering if I’m pregnant. No period comes in January so I take a test, or a few. They say I am pregnant. I call my doctor schedule and appointment and now I’m waiting. As I’m waiting, I take more test because I can’t believe it. Then, I start getting negatives. The once dark line is now lighter as the days go on. And by the time my appointment comes, the doctor tells me I’m not pregnant and send me for blood work. Blood works confirms I’m not pregnant. So I ask, why I would have gotten all the positives and they basically tell me, “I don’t know “.

Since I thought I was, the idea of having another sparked a want in me and my husband. So we start trying. My period doesn’t come in February. Doesn’t come in March, April, or May. I got back to the doctor to see if something is going on. They run tests do some blood work and come tell me, I am in ovarian failure. My body is not producing any estrogen or progesterone. They put me on birth control to give me some estrogen. I start having heavy and painful periods. Plus my mood is so low, my husband is worried about me. I go back to the doctor in February of this year, he says stop the birth control let’s try the patches and pills. Also, you probably won’t ever be able to get pregnant because of the ovarian failure. So here I am now in July wishing on every shooting star and praying that maybe, just maybe I can conceive. And trying to be happy for everyone that can have babies around me.

Sorry for the long post. I just had to get it off my chest.

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 POI, so I don’t think the diagnosis itself caused it.
I’ve been on HRT ever since. Right now I take Femoston 2/10 (2 mg estradiol every day, with 10 mg dydrogesterone during the second half of the cycle).
Since my diagnosis, I’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 something 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, I’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 POI 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, I was diagnosed with POF at 14 after not having my period for a year. I've been on multiple types of HRT since then (I'm 22 now) and I'm just exhausted. My doses have been changed more times than I remember and it always ends up with me bleeding off schedule. I use estrogen gel everyday and progesterone for 10 days every second month (I have very low iron). The problem is that I don't want to bleed. Like ever again. I've discussed with my endocrinologist but there's nothing really they can do, other than change my dose, again. Not being able to have children doesn't quite bother me as I accepted the chances years ago. I've stained basically all my underwear, I can't have sex without bleeding afterwards or the next day, I can't predict when I'm going to bleed and I'm just so tired all the time. All I can really consider a solution is getting a hysterectomy, but it's expensive and my doctor said no. I lived my entire youth struggling with this and I'm just so so over it. Idk what to do

Pof and severe hair thinning and loss? I can’t believe how much hair I’ve lost, anyone else? Will it be like this forever :(

Hello I'm 29, recently diagnosed with POI, the cause? Still unknown might be thyroid still up for tests if it's autoimmune.

AMH < 0.03; FSH high

My gyn suggested I take Estradiol (oral) but I'm hoping to switch to another specialist, if it's better to have gel/IV/patch estrogen.

POI is so rare that my doctor recommended I take multivitamins and Oral BC.

Any thoughts/wisdom re this matter? Thanks!

OBGYN, Reproductive Endocrinologist, family doctor, someone else?

TW: pregnancy & breastfeeding

When I started my fertility journey, I had a pretty awful RE that treated me as just another number rather than trying to help me get to the root cause of my infertility. In between switching clinics, I met with an online menopause specialist (midi) who advised that yes, I more than likely have POI based on my labs, infertility, and other symptoms I’ve had for years. However, since meeting with them, then fertility treatment at my new clinic, pregnancy, and currently weaning from nursing, I’m not sure who to go to to truly get a formal diagnosis or treatment plan once I’m no longer nursing.

So just trying to understand where everyone else got their formal diagnosis and who do you currently work with for ongoing treatment/HRT?

After 2 whole ass years going through hell I finally did it!! It's been a crazy fight. I want to share my story incase theres someone like me here. Scroll down for the paraphrase.

For those who don't know my story, I don't fit perfectly in the POI diagnosis criteria... but my symptoms are too severe and my hormones are too low to fit in the DOR box. Every other possible diagnosis has been ruled out 4 times.... so the final thought is: I'm in an early stage of POI and the severe low hormone symptoms came earlier for me. As my cycle sputtered out, I was given BC... but I never got repeat labs... so I'll never know if my FSH rose. I'll never have closure in that way.

I'm not sure if anyone else in this group has had the same experience diagnostically, but it has been an absolute horror to try and get proper treatment as someone who doesn't fit in the box. Dr's look at my labs, graze past the multiple low hormone readings, and see my FSH, LH and AMH. They hear the severity of my symptoms, and then look back at their computers, ponder over the FSH LH and AMH.... and say no. "No, you can't have HRT. No, birth control is the better option. Birth control has more hormone in it anyways. Also therapy, you're too anxious."

My own menopause specialist was super out of date with black box warnings and dismissed me everytime. I shouldn't have to wear Depends as a 23 yr old... but she'll help! And then 23 turns to 24, and then to 25... I ended up getting so anxious for any Dr's appointment because it felt like I was preparing for war. She felt like the only option. My 2 different endocrinologist referrals would take years to see and I'd seen 4 doctors already who all said #1 "youre crazy and need therapy." Or #2 "I can see somethings wrong, but I'm not knowledgeable enough to help."

So I finally tried one more time for a new dr. My boyfriend had multiple head injuries that left him with low T levels, and his dr has been a godsent for his hormones.... I asked during one of his appointments if he was comfortable with woman's hormones... and he said he'd take a crack at it.

He kinda treated me like a man. He saw that my FSH, LH and AMH were weirdly okayish.... but he honed in on the low hormones and saw that everything was ruled out except for POI. He listened to my symptoms and started me on a really weird regime. The synthetic progesterone in my BC was too weak and I still couldn't sleep... so he gave me bioidenticle progesterone on top. He gave me a new (and stronger) compounded estrogen cream for the external vaginal atrophy. He heard that I was forced to change my stupid BC patch every 72 hours instead of 7 days cuz it ran out of juice. He wrote a prescription so I could continue doing that.

I still wanted HRT, and the cost of the uninsured 72 hr throwaway BC was killing me. I told him I couldn't afford it, and he said "thats fine, bioidenticle is covered for you, so lets do that." He told me to take the 1 pump compound cream I was using on my vulva for vaginal atrophy and increase it to 4 pumps, spreading it on my thighs and belly.

I didn't believe him!!! I was so scared and so ready for a fight, I thought he was crazy for making me spread vaginal atrophy treatment on my body. Surely it wouldn't be systemic!?

Well, yesterday I learned that compounded creams are systemic in larger doses lol. I am now the proud owner of a continuous regime of 1mg of bioidenticle E2/E3, and a taker of 200 mg of bioidenticle progesterone. And if that's not enough after 1 month.... he will increase me again and again until I am symptom free and have the hormones of a 25 yr old (including testosterone). As for right now. I feel AMAZING. Within 6 hours of ripping off my BC patch and putting on the cream, my heart palpitations stopped and my blood pressure dropped. For the first time in 2 years I felt happy and hopeful and energetic. I haven't had a single hotflash and my skin is bright again.... and I'm only on 1mg of E!!! Thats like 4mg of synthetic E (and I was suffering on a 35mg BC patch!) I want to kiss that weird old man on the mouth. I was ready to give up on my old self and accept that I was broken and hopeless. I cannot believe the difference between bio and synthetic hormones, and I'm so goddamn relieved that my fighting is finally over. I won't ever know what happened to my body, but after 2 years of just wanting to feel okay, I don't think I really care that much anymore. I feel so at peace. I'm gonna go on so many hikes and bike rides and have so much fun and shag my boyfriend until hes dry!!!

-----paraphrase

I don't fit in the poi box perfectly, and multiple doctors have said it must be an early stage of POI after ruling out everything else 4 times.... but because I don't fit in the box, getting proper treatment was impossible. My menopause specialist sucks, was out of date, and we hate her💅. I saw a new dr (who is my boyfriend's testosterone dr). He is weird, but has finally treated me like a human, we love him!!!!!! I understand the HRT vs BC hype, HRT has made me feel perfect! For now I am on a starter dose (1mg E2,E3 + 200mg P) of continuous HRT with plans for increases and T in the future! For the first time in 2 years I feel myself and have hope for my future.

I’d really appreciate hearing your stories and experiences.

I’m 40 years old, have no children, and honestly thought I still had time. Recently, some symptoms led me to a menopause clinic, where I was diagnosed with POI. I was prescribed hormone replacement therapy, so I’m now taking estrogen and progesterone for my health. I was also advised to see a fertility clinic if I wanted to have children.

I had my appointment at the fertility clinic today to get a better understanding of my options, but I left feeling confused and overwhelmed.
My AMH is 0.03, and they couldn’t see any follicles on the ultrasound.
I was told that if I want to have a child, my only option would be egg donation abroad.

To be honest, I’m quite shocked by this. Especially because I still get my periods. They’re irregular, but they do still come.

Is this really the end of the road when it comes to conceiving with my own eggs? Has anyone here been in a similar situation or received a similar diagnosis? Were you able to conceive with your own eggs, or did you pursue other options?

I would be very grateful to hear about your experiences.

Today is day one of trying compounded testosterone. I felt a bit off and had some hot flashes, but mood is good. For those who have tried testosterone, how long did side effects last, and when did you start feeling benefits? Thanks!

Update: day three now and the weird feeling and hot flashes didn’t happen after day one. Seems to be good now!

I (35) have Primary Ovarian Insufficiency (POI) since 1 year and I’m on continuous HRT: 3 pumps of Estrogel every morning and 100 mg Utrogestan (oral micronized progesterone) every night.

About 3 weeks ago I accidentally missed one single dose of Utrogestan. A couple of days later I developed light brown spotting, which turned into about a week of light-to-moderate bleeding accompanied by intense uterine cramps.
The bleeding completely stopped for about a week, and since the forgotten dose I’ve been taking my progesterone every single day without missing any doses.

However, I’ve now started spotting again (currently just light brown spotting) and I’m getting lower abdominal cramps again, 1 week after it stopped. I had a transvaginal ultrasound a few months ago and my endometrial lining was thin and everything looked normal.

Has anyone experienced prolonged or recurrent breakthrough bleeding after missing just one progesterone capsule on continuous HRT? How long did it take for things to settle down again?
I’m mostly wondering whether this can simply be my uterus reacting to the hormonal disruption, even though I’ve been taking my progesterone correctly ever since.

(I’m waiting to hear back from my gynecologist, but appointments take several months where I live, so I was wondering if anyone has had a similar experience)

Hi all! I’m 36 and got diagnosed this week with POF. My dr gave me two options, HRT or birth control. I know I’m super forgetful and would probably be inconsistent with taking my meds so I opted for the birth control patch called Twirla. After reading up on this, I’m worried I made the wrong choice. Has anyone chose birth control over HRT? To be honest, I don’t even need birth control because my husband had a vasectomy a couple years ago. Just looking for some insight! Thanks!

TLDR: How did HRT affect your milk supply?

My baby is currently 11 months, and my original plan was to breastfeed her for a year, which I’ve been able to accomplish so far. She is EBF, though she can take a bottle occasionally when I’m not around. I have a small freezer stash of frozen breastmilk but not much as I’m pretty much an exact supplier.

I still havent restarted HRT. I love breastfeeding much more than I thought I would, and I’d like to continue for at least a few more months for bedtimes and overnight as needed, or until baby is ready to wean herself.

I am struggling to decide if I should start HRT, as I’m concerned about my own health, but more concerned about continuing to breastfeed my baby. I still nurse at least 6 times a day plus overnight wakeups. She is eating 2-3 meals per day of solids.

I know that estrogen affects your milk supply, but what does that mean exactly? If you resumed HRT while breastfeeding, did your supply dry up immediately? How much did it decrease? Were you able to eat/drink more or power pump to get your supply back up or is it an irreversible decision?

I’m so scared that my supply will just completely dry up and I’ll traumatize my daughter because there will be no more milk left for her. 😞

Prior to pregnancy, I was on an estrogen patch 100 mcg twice weekly, the. Progesterone pills 14 days a month.

I got diagnosed in my early 30s. Was in denial and in fear of treatment plan for 3 years. Finally started HRT, which helped with joint pain and fatigue.

Libido hasn't returned. Weed helps but I have zero spontaneous desire. I feel so empty inside. My parter is amazing but I feel so guilty.

I feel no interest in sex, no attraction, nothing. A few years before my diagnosis I was telling people I was asexual.

I would do anything to get my libido back and interest in sex. The last time I remember wanting sex/getting spontaneously horny was like July 2016.

My endocrinologist hasn't mentioned testosterone.

I feel better knowing I'm not alone in this feeling.

What hurts the most is seeing women a lot older than me still being able to get horny and feel sexy. It's quite a depressing existence.

I am 38 and was just put on hrt just 4 month ago. I went to my check up and dr keep kind of “advising” that I could go in a higher dose since I am still young and not producing any estrogen.

What dose do you take?

I am in 1mg estrogen in pill and 100 mg estrogen. I feel good so far but not sure if I should increase it..

Hi.. I’m waking 1-3 x every night with a rush of energy which is hard to describe.. kind of like a sudden surge of adrenaline in my body, but often my brain will still feel sleepy.. it’s not a normal alert feeling.

Often this is accompanied by a chest sensation that I guess could be described as pain.. though it’s not really painful per se. Edit: [My pain tolerance might be higher than average though]. I think it’s usually across both sides but a little more on the left.

Feels very hormonal, but I can’t find many descriptions like this. It does not feel stress related. The heart aspect does not feel like palpitations, fluttering, jittery, heart burn/reflux, pressure (I don’t think), or other descriptions I’ve come across. I guess tight and pain is how I would best describe.

I’m still in the process of being diagnosed POI/POF, and really need to advocate for testing/investigation.. but lots of signs do point to this. Canadian system.. doc would likely get me HRT faster than ordering investigative tests.

Is there heart related testing I should ask for?

Anyone else having this?

I think chasteberry is helping the frequency/intensity, but it’s still nightly (well.. the heart piece maybe not nightly, but often enough). I’m open to HRT as well, but I would love to get an investigation/diagnosis of endometriosis first so that HRT protocol appropriately factors that in.. can’t get anywhere in this system.

Hi all! I’m 38, surgically menopausal for almost 2 years. Despite there being a heatwave and living in the US South, I am so cold. I noticed I had a lot temperature issues leading up to my hysterectomy..and lately it seems to be creeping back in. Any advice or input or personal experiences? I know I need to make an appt with my dr (I have no libido), so wondering if it’s T related or if everything is just a little off kilter and I need a med adjustment.