Labs on March 19: estradiol was 14 FSH was 61.7. Got sent to a reproductive endocrinologist for confirmation and treatment of POF who did a second set of labs on May 3rd. Estradiol 265 FSH 10.6. Is it normal for these to jump around like this? The doctor hasn’t called yet because they’re waiting on more labs (genetics, karotype, etc. to determine possible causes) but I’m just sitting here confused. What gives?

I’ve only been on HRT for about 10 days now and it has changed me in so many positive ways. I sleep better, wake up w more energy, have better focus, & less moodiness. But the one negative side effect I’ve been dealing with is breast soreness. They hurt sooo bad everytime I take a bra off and there’s nothing supporting them anymore OR right when I wake up in the morning 😭 does anyone relate/ know what to do about this? I’ve heard ppl say to decrease progesterone dose but it’s already only 2.5 mg, I’m not sure if that’s a lot. But omg this feels like period boob pain😭😂😂

Hello, I’m 17f diagnosed at 16, and I use a xulane estradiol patch. I was wondering if anyone else has issues with severe period cramps? Sometimes mine as so bad that I can’t sleep at night or walk around. Pain relievers often don’t work. I get mild cramps when I’m not menstruating as well. I asked my gynecologist about this and she said there was nothing that could be done, which I find strange. Does anyone else have this issue or had it in the past? What did your doctor do to resolve it?

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, POI lady also trying to conceive. Genetic cause. I'm 34, AMH from .11-.15. I don't respond to stimulations. Started ttc in August 2022. 2 failed IVF.

I started HRT in February. The estrogen pill has been helpful but I still deal with tiredness, fatigue and confusion sometimes. I'm don't love the progesterone taken days 1-12 at night. It makes me so moody.

I had a follow-up with another provider today than the doctor who originally prescribed me the HRT. This provider thinks that the patch would be a better option for me. I'm hesitant to switch things up. I'm sensitive to medication and usually moody as heck.

In terms of trying to conceive whilst on HRT - is there any thought as to what HRT regimen and what estrogen form is best? Should I take 100 mg of progesterone daily vs. the days 1-12 of 200 mg?

Thank you for the guidance.

So hi everyone, I’ll be trawling through all of the information on here. I have a healthy 8 year old but after one bad loss and tests I found out I have POI, since then I tried fertility treatments but after 5 early losses and the acknowledgment that I’m also a poor responder I’m needing to let it go.

Just had some bloodwork done I’m feeling worse as the year goes on but I did just have another recent loss … I’m now apparently pre diabetic, and My liver ATP was slightly elevated and so is my cholesterol. I honestly eat well but during treatments I was told to move less and eat more carbs. But I did love pasta and toast.

Well I went from a healthy weight to not so healthy… I’m back exercising but wanting to cut my calories and figure out a sustainable plan. I used to fast and use keto pre fertility treatments. This whole situation really is tough mentally and I’m struggling.

Other people don’t get it or can’t relate, none of my friends are even close. Booked in to get baseline bone density scans but because I’m naively hopeful that maybe a miracle egg will ovulate I’m hesitant to go on HRT. Also as a younger women the pill (various brands) really messed me up mentally and i’m scared that could happen again.

I feel really old and sad.

I am a long way from optimized on my HRT but I wanted to share unexpected improvements since I started HRT three months ago.

About 6 months before finding POI I knew my health was poor so I bought an Apple Watch, blood pressure monitor and a continuous glucose monitor to figure out what was wrong. Before HRT or knowing of POI, I found:

Apple Watch said I had insomnia but more interestingly I breathed too slowly at night averaging in danger/caution zone of 10-12 Bpm. Sometimes it was as slow as 7-8. Also my wrist temperature stayed flat all month.

Bp monitor found regular prehypertension and this has been an issue for me for years sometimes with periods of high Bp.

Continuous glucose monitor found that even tho I had an A1c of 5.6-5.7 after every meal I was hitting 170-210 and then falling to 70-90. It also found with any real exercise I would drop into 40-60 range. No diet change seemed to help this pattern.

After three months of HRT all these metrics have improved dramatically. Now my sleeping breathing is average 13 bpm (healthy range), my temperature cycles through the month according to progesterone usage, my Bp is normal, and my glucose is much less variable. In the glucose case even after I eat a bowl of white rice and icecream now it hits a max of 150 and comes to 80. Also a jog or exercise doesn’t send me into hypoglycemia anymore.

As I said I still have a long way to go symptomatically but I wanted to share these findings because I didn’t expect them. It shows how POI causes heart disease etc over time in my mind.

For reference I started on .50mg patch and 100mg progesterone vaginally and now .75mg patch. Still working on getting it right.

Last week to answer this survey if anybody else wants to participate :)

Hello everyone, as someone diagnosed with POI, I decided to do my final year-long project in University on understanding the impact of POI on diagnosed individuals and the support they receive. I have always felt that my condition needs more attention, and hope that this study shines a little more light on it.

I have created this quick questionnaire that is completely anonymous to gather this data; any help would really be appreciated!! If I get good results, I would love to share with this community as well. Thanks, and let me know if you have any questions!!

Available in english

https://docs.google.com/forms/d/e/1FAIpQLSfcDGV37JHWCEf0b5fPUnQB8uC3pD0XEwNFJu_Zg7JZn343Tg/viewform?usp=sf_link

Available in spanish:

https://docs.google.com/forms/d/e/1FAIpQLSeAvQWpi1fkmYlbsTSowy6dqeF9dHdWOxj7cJ2GoX5MEmBLpA/viewform?usp=sf_link

Hi ladies,

I'm desperately trying to get my Mylan .1mg estradiol patches refilled at any pharmacy other than CVS or Walgreen's. Walgreen's mysteriously stopped taking my insurance and I was having to pay $100+ every month and the drive to my nearest one was an atrocious 30+ minutes one way. Every CVS in my town is awfuk; they don't fill scripts same-day, they take days upon days, and when they do fill a script it's wrong or they don't listen to the directions from my doctors.

Anyway, I am that person who has the worst of the worst "rare" side effects of basically any medication. It's just how I've always been. So when formulations and brands (even from brand to the generic) happen at the pharmacy, and I try to grin and bear it, my body just freaks the hell out. When I find something my body tolerates, I stick with it.

Two weeks ago I tried to transfer my patches to Amazon Pharmacy. They take my insurance, they showed Mylan .1mg in stock, and I was ready to go. Then I get a call from my doctor's office that Amazon actually *doesn't* have the Mylan patches in stock.

So I went into my local Costco and asked if they had them. I was told "yes, we have them; just have your doctors call it into us and we'll transfer it over here." PERFECT, I thought.

This week, I get a text from Costco that the patches I was told were in stock two days ago are now out of stock. WTF is going on?

Does anyone tolerate or use the Mylan patches and have a recommendation on an alternative brand you also tolerate well? I'm afraid I'm going to be left hanging without my HRT as I go into the middle of this week. I change my patch tomorrow, then I'm out dry. HALP!

Wanted to vent. I got diagnosed with POI last year and since then, it has been a crazy rollercoaster for me - Not only I was in the middle of trying to have a baby, but learnt about all the crazy things that POI does to your body and how it will affect my life.

I managed to get pregnant with IVF and as I look into my babies eyes I feel so lucky and blessed. However, it feels like now that I got my baby, my parents don’t seem to care about my condition. For then, POI was always about the ability or not to have a kid. I have told them so many times that I will need to go into hormone replacement, that all my years of anxiety and depression were prob caused because of this , and that now I have a life condition that needs to be treated. Not to mention the mental psychological toll of getting to understand that most likely my period will not come back after breastfeeding my baby. They always laugh at me and they think I am just overexagerating. They also really seem to think I will be able to have a second baby no problem.. I feel so lonely and misunderstood :(

I'm prepping for an appointment for tomorrow and rediscovered this symptom score sheet. It's a good one. https://www.menopause.org.au/images/stories/education/docs/AMS_Diagnosing_Menopause_Symptom_Score.pdf

Hi all. 29F here. I've known since I was a young teenager that something was wrong, as I've literally never had a period. I didn't really start seeking answers until 2020, but ya know, 2020.. so I buried my head in the sand until early this year. My life is finally so good that I now have started fearing death and loss of quality of life, as opposed to pining for it. The looming sense of mortality finally exceeded my anxiety over receiving treatment. I thought when I started treatment for POI, it would be fine and I would be able to relax, but I'm struggling still.

I'm currently in my second month of 1mg estradiol pills- I started at .5, then .75, then 1, as I had severe side effects to BC the one time I tried it as a teen. The side effects to the estradiol were not debilitating but there were certainly days where I suffered greatly. I'm due to start progesterone in a few weeks as well, and I'm concerned about those side effects. And then the side effects of possibly increased doses in the future. And the effects of long term usage of these medications. And the fear of possibly starting to get periods. And patch vs pill vs gel. And and and I'm sure you all can relate to the spiraling thoughts, the thousands of questions.

I feel like I'm all alone- no one understands this. They can sympathize, they care for me, but a lot of things get written off as funny instances of me experiencing puberty for the first time. I know I have to do my own research and advocate for myself, but just reading through this sub is overwhelming, nevermind actual medical resources. I know I should seek therapy, but it's just not in the budget right now. How did you adjust to the knowledge that you'll be on medication for the rest of your life? The frustration over lack of information? The overwhelming number of options for treatment, with no way of knowing if a given med is the wrong choice until 20 years down the road when you have a stroke?

I know that I had to start treatment, that the long term effects of not having any estrogen would be worse than the effects of treatment. But sometimes I wish I had just kept it ignoring it and kept my life simple and easy.

TLDR: I listened to too much Tortured Poets Department and now I am spiraling about how difficult the rest of my life will be.

Anyone here have morning sickness whilst on estrogen + progesterone? If yes, how do you cope / deal with it?

I took 10 mg Progesterone for 5 days thrice, till I reached 100mg. I stopped on 24th April. Its day 10, and I still have no period.

I am 29 F with POF/severe Oligomenorrhea.

I am 2 mg estrace and 200 mg progesterone

I wanted to ask you ladies how much mg of estrogen and progesterone are you taking for your HRT?

Hi all! I’m on estradiol and take progesterone 12 days a month to trigger a period. Works every time.

However, I got my period yesterday without taking the progesterone at all. Definitely alarming at this point. I would ask my doctor, but he recently retired and I have to find a new one.

Anyone experience this before and have any answers?

Hi everyone, I'm 23, and I was diagnosed with POF last year. I’m on birth control (2 mg of estradiol for 28 days, 10mg of dydrogesterone for the last 14 days of the cycle). And I'm unsure if the dosages are sufficient for my health. I mean, I haven't had any bad experiences or side effects, and it’s been more than a year. Is there anyone who’s on birth control? Or do you think the dosages are not enough, and it can affect my health negatively in the future?

What time of day should I take these hormones? Doctor said morning but mostly everywhere online says evening with a meal 😳

I'm 19 years old got diagnosed last year i never had a period until i took estradiol pills progynova 21 and vitamin d. I.e 2000 and got a period after 3 months of using them i always had POF/POI and my ovaries never worked once i have an amh 0.01.

Do you know this feeling your just chilling your life and then all of a sudden a huge sadness comes to you for no reason and you can't figure out why? I have this problem i have no reason to be sad. Is it normal to be often sad put of no reason? Like fr i always had this and didn't know what this was could it be because i have POF/POI? My endocronologist told me my spinal cord is healthy.

Sometimes this is very annoying i'm sweating out of nowhere and get sad this is so uncomfortable. How do i fix these? I use 2 mg estradiol once a day.

Hello! I was diagnosed with POF recently as a 24 year old woman. I’m starting HRT soon and I was wondering if anybody had any experience with estradiol that they’d like to share. It can be positive or negative, I just want to know what kind of reactions people commonly have. When I google it, I get a scary list of all these risks, so I wanted to hear from real people.

Hi all. Trying to see if anyone else is out there with a similar experience. I have diminished ovarian reserve (34). Turns out due to a genetic deletion, I have impending POI. My FSH ranges 8-20 but my main symptoms are shorter, lighter period now 30 days apart. I have extreme heat sensitivity. Anything over 70, I’m dripping. Chest, back…other places. I’m so sick of it and it is very embarrassing/upsetting. I have night sweats for a week around my cycle. Dripping through my pajamas some nights. I have hot flashes and can’t even sit in a booth with shorts if too warm. Estradiol 2mg for a month did nothing. I know it is hormonal because it happened 6 weeks off BCP and stopped while I was preg. I miscarried and it started 6 weeks after. Please help. Any other med recommendations that worked for you? Is the patch better? I just want to enjoy my summer. Tysm.

This is the place to post questions if you have not been diagnosed with POF/POI/DOR and are worried you may have it. Out of respect for our members who are learning to cope with this life changing diagnosis, we ask that you keep questions limited to this thread if you have not been formally diagnosed. Reassuring someone that they likely do not have this traumatizing diagnosis when you yourself do have it can be painful, we hope you understand. If you have had testing done that suggests you are somewhere on the ovarian failure spectrum (for example low AMH, high FSH) you are welcome to make a standalone post if needed or post here. You'll find our wiki here. Ovarian failure is a spectrum which can be considered "diminished ovarian reserve (DOR)" in the early stages and eventually progresses to premature ovarian failure (POF), aka primary ovarian insufficiency (POI).

If you are here looking for answers, Medline has a helpful basic rundown of the disease. Symptoms are often vague, nonspecific, and irregular periods are often one of the LAST symptoms to appear. Many other much more common conditions carry the same symptoms, for example PCOS and hypothyroidism. For this reason, you should see your PCP or gynecologist if you are worried.

If you are worried about your "ovarian age" or are having trouble finding a doctor to order the appropriate test, you can order one online from Modern Fertility (there are other sites that offer similar services).

If you are frustrated with your doctor and would like help finding one who is a better fit, read this post.

Thank you and welcome to our community, we hope your stay isn't long!

Is 1mg of divigel (transdermal estradiol gel) the same potency as 1mg of oral estradiol?

I am having breast pain and all, more fluids than ever, but no period.

What can be the reason?

I am not pregnant.

Has anyone been able to conquer this? It seems like estrogen never can quite make it to my hands and nails. Ugh. So tired of hating my hands.

Has anyone had any luck with this? Higher estrogen? Better products? Please help!

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).

Hi all,

I guess I’m looking for some reassurance it will stop.

In January I started taking transdermal estrogen (2 pumps estrogel) and oral progesterone (dydrogesteron 10mg) on a continuous schedule since my last period was over 12 months ago.

Although the start was good, after a month or so I started spotting every day, which has been going on for about 2 months now. It has also increased to more period-like bleeding.

I know that bleeding in the first six months is fairly normal, but I can’t stand the idea that this will continue for 3 months.

Did someone have the same experience and when did it stop?

I also want to increase my estrogen in a while to try if I can make more of the symptoms go away, but for now I’m kind of afraid to try.

I have an appointment with my gynecologist in a month but am interested in your stories and advice. Thanks in advance!

Update—————————

A few days ago, I started a new bottle of estrogel. It is from a different brand. And the bleeding stopped…

So now I’m thinking the bleeding might be related to the gel, since the first time the bleeding started I also just started a new bottle.

I always thought brands of medicine wouldn’t really matter, but now I’m not sure anymore

Update 2 ————————— Never mind, it was away for some days but then it started again

I hope this is okay to post but there is a POI group for those of us who are people of color

https://m.facebook.com/groups/POI.POF/?ref=share&mibextid=S66gvF

After 3 months of using progynova 21 (estradiol 2 mg) i got my period for the first time and my gyno prescribed me gynokadin 2m estradiol i've heard that lining can build up and you can get cancer from that, is it bad that i still use then estradiol pills for more 3 months. Should i stick to progynova 21 ot id gynakodin the same? I'm afraid that my uterus could overgrow and be cancerous. (Sry for my english)

Hi, 39f here that was just diagnosed with POI. For the last two years my period has been irregular, then for the past 3 months I haven't gotten a period. Since then I've been experiencing hot flashes ( sometimes getting cold too) and more anxiety as normal. I've just been feeling off. My husband and I thought it might either be perimenopause or hypothyroidism (runs in the family).

I went to the doctor this past Tuesday prepared to fight for getting labs done to see if I was in perimenopause. To my surprise my doctor was like yep let's order labs for you. They tested my estradiol, FSH, and progesterone. I got the results back at the end of the day that my estradiol was 35, FSH 127.4, and progesterone at <0.5.

My doctor called me the next day and said I have POI and made an appointment for me to see my obgyn for next week. I feel validated more than anything because I knew something was wrong but didn't quite know what. Now I'm just anxiously researching and waiting for my OB appointment. I'm just a bit overwhelmed at all this stuff my body is and is going to go through. I don't know what my next steps will be, but I will see what my OB suggests. What should I be on the look out for?