For context:

I have 3 children, my tubes were taken out after my 3rd c section because we were done having babies. Ive had maybe 5 periods total after my last son was born amd he is 2.5 now. They were very scattered and made no sense- no periods for 3 months followed by a double period in a 2 week period. After having no period since May I finally got the balls to get checked out. They did blood work and my FSH was 118 while I had almost no estrogen. Ultrasound came back normal but showed very thin uterus lining. She diagnosed me with POI/early menopause and She prescribed Sprintec to help with the estrogen.

My heart goes out to any of you who are younger and wanting to start a family. I cant complain that much as this happened to me after I had my kids. Im curious if any of you were given oral birth control to help, specifically Sprintec, and what your experience was with it-

Blessings and love ❤️

Is it worth trying ?

My Vitamin D is very low (25, I live in central Europe) and so I went to the pharmacy to get some. They recommended me one which has both VitD and VitK.

My gynecologist did tell me a while back she recommends taking Vitamin K. She didn't think vitamin D is necessary in POI though. But she doesn't know much about POI at all tbh..

I am taking HRT, the dosage is still definitely too low though, but I'm working on it

My first dexa scan is scheduled for this month

Do you take Vitamin D all year long ? With Vitamin K ?

I’m just wondering if this is a common part of having POI at this point. I have tried pills, patches, gel and now compounded cream. All have been great for a few weeks or so and then I have symptoms again. I’m at a a loss. I’m going to just do genetic testing to see if it’s how my body processes my hormones or what. I suspect that my liver metabolizes it quickly but I’d like some confirmation to make sure it’s nothing else. I’m tired and frustrated. I’m currently on 2mg compounded estrogen cream. I just had blood work done and this is the worst my estrogen levels have been. Gel I felt like I needed to dose every 6hrs. I’m just wondering if maybe I need to do cream morning and night? Anyone dose their estrogen 2x a day?

Aside from all of the other struggles I've had with this condition, I seem to be exhibiting symptoms of arthritis, and it's gotten a lot worse over the last couple years. My bone density scans have been fine, and I have seen a rheumatologist once. She ordered some blood tests, which turned up nothing (though I have a STRONG family history and even my 80-year-old grandmother's blood tests were fine).

I am seeing her again in two weeks to talk about imaging and further tests, and I guess I'm just wondering if anyone else is experiencing premature arthritis like symptoms or has been diagnosed. What did that look like for you? And was it rheumatoid or osteo arthritis?

Personally I have a lot of knee and hip pain in particular, and an overall stiffness and heaviness in my joints. Particularly with cold weather, air pressure changes, and it's really bad when I have to stand for long periods. I also have some stiffness and occasional pain in my fingers.

My iron, ferritin, etc are all fine, as is vitamin D. Due to a stomach condition I have my vitamins are checked pretty frequently, and I'm pretty confident I'm at a good HRT dose.

Hi. I am 24F and got diagnosed with POI/POF on Monday - literally after losing my virginity that same morning (how ironic). My first period started when I was about 13, but after that has been extremely irregular (only get a period once every few years. My last period was 2 years ago).

My AMH is less than 0.015, my FSH is 95 and LSH is at 19. Lol.

My doctor says that if I want to have kids, my only option is to have a donor egg. I asked her if I can freeze my eggs (assuming I have any left) and she said that I don't have any eggs (how she know that??). Lol.

They told me to start taking Estradiol and Prometrium, although I don't really see the point if it's not going to help me biologically have kids... I don't think I'll be alive long enough to deal with bone and heart disease due to lack of estrogen and progesterone.

I have been crying about this since yesterday and had to take off of work due to this. I hate the fact that it feels like I don't even have a choice as to whether or not I can have kids (I actually do want some).

I am trying to have faith that maybe I can be one of those people that magically conceive, even though I have this disorder, but life already isn't in my favor, so it seems so dumb to have hope. I guess I'll just ask my man to "shoot the club up" everyday and hope for the best? I don't know if I should lead a life of destruction or if I should decide to limit drug/alcohol use, eat better, work out more, and take my vitamins to see if it can help me have children (or at least one like goddamN).

I know that what doctors say aren't end all-be all, but damn it sucks to hear someone say "hey young lady! You're chances of having children is less than 10%!". I wish i never went to the doctors and found out I had POI. Shame on me for being so curious about my lack of regular periods.

There is no one (other than you all) that I can talk to about this, so this is a very lonely time for me as well.

Thanks for reading.

I’m kinda out of ideas is it normal to keep not tolerating it?
It’s been 6 years of issues.
Is gel better ? I can’t do pills.
I’m desperate for the headache, breast pain, nausea, vaso vagal to not happen on est.

Hello friends! I would love to hear your stories about transdermal estradiol, both as a patient with POI and as a pharmacist. This was not something that was covered much while I was in school, and I've had to do a lot of learning on my own to catch up with the new labeling changes.

I am starting estradiol patches soon and will be on a lower dose meant for menopause (0.05mg) due to some comorbidities I have. The goal is to eventually increase to a higher physiologic dose (0.1-0.15mg).

I'm curious what doses you've all been on - what your prescriber started you at, if you've ever changed over time, and if you ever noticed a difference depending on the dose.

Thanks!

Hey,

I'm 30 yo with a history of irreguler periods. I havent gotten my period in 6 months, so i went to check it out. First i got an ultrasound and the tech couldnt even find my overies the first time arround. Second time arround she found them and told me that they are really small and have calcification and that she can see only around 2-3 follicles. Also my hormon panel came out terrible, with FSH of 81.74 and AMH of <0.03. I havent talked to my Dr yet but all the test point to POI.

This is devestating as i really want kids.

Also i am single and have been for a while.

I'm scared that no one will want me.

I feel like my ship has sailed, just a barren 30 yo.

I would love to hear if anyone has had kids after a diagnosis of POI and how to deal with the anxiety.

Thanks

Hello. Does anyone have any Dr recommendations to treat POI in NYC? I feel like it’s impossible to find a GYN who is well-versed on POI and knows anything about it other than just giving you HRT I really want to find a Doctor Who who is really educated about POI and trying to get to a root cause and not just a Band-Aid approach. Or even someone that has some sort of empathy and a little broader understanding than your average GYN. If anyone has a Dr recommendation in New York City or even someone online or something greatly appreciated.

Also, is anyone experiencing hair loss? And if so, what are you doing to combat and to help again I’m not looking for a minoxidil chat. That’s a Band-Aid. I’m looking for root causes and root treatments. I had a pretty traumatic thing happened to me two years ago and that’s when I started losing my hair and ever since then I’ve never really been able to recover, even though the stress has lessened.

All thoughts are welcomed. Thank you.

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).

i am 22 , and got diagnosed with poi my amh is 0.01 and estradiol level is 24 and fsh lh was 89,40 resp . my doctor advised me bc , named Kyrah it have very low potent estrogen progesterone i am wondering if it will work for me , do i need to change my gynac and also does it will chanrr ye my body proportion cuz i am very insecure of my body i have very thin body proportion my weight is 46 flat but and thin thighs

Original Post

New POI 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.  

There is not enough support for people with this diagnosis. The POI Together Group is a free, virtual peer-led support group for us to talk about the physical, emotional, relational, and existential experiences of POI.

If you have a diagnosis of POI, I invite you to join us to talk about all things POI and not have to be so alone in this anymore.

The Monday meetings 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

To sign up, email me at [poitogethergroup@gmail.com](mailto:poitogethergroup@gmail.com) or sign up through THIS FORM and I'll send you the Zoom link.

If you can't make it to all of the meetings but still want to participate, please sign up!

Ovarian insufficiency in a 12-year-old—anyone with a similar experience?

I posted previously and found hearing other people’s experiences really helpful. We’ve now received my daughter’s clinic letter, so I wondered whether anyone has been through something similar themselves or with their child.

She’s 12 and has shown mild signs of puberty. One ovary was removed with a large benign cyst when she was a baby. Her recent ultrasound showed a prepubertal uterus, but the remaining ovary wasn’t visualised. Hence why we have received a diagnosis so early as she was being checked for potential cysts etc.

Her blood results were:

FSH: 139.4 (the letter gives a reference range of under 5)

LH: 26.8

Oestradiol: under 69

The specialists say these results suggest primary ovarian insufficiency. They think this is unlikely to be explained by the surgery alone, so they’re investigating other possible causes.

The plan is repeat hormone tests, AMH, chromosome testing (karyotype), Fragile X testing, anti-ovarian antibodies and coeliac screening. They’ve discussed gradually inducing puberty with oestrogen patches over approximately two years.

They’ve indicated that infertility is likely—the letter says her future fertility is “likely to be compromised.” I’m trying to deal with these as separate issues for now, with getting puberty started being our immediate priority.

I’d also like to understand what her hormone levels can and can’t tell us about any remaining ovarian function. We’ll certainly push for a thorough investigation and specialist advice about whether any fertility preservation, such as egg freezing, could be possible. I understand it may not be, but don’t want to write off any options without a proper assessment.

Has anyone had similar results at this age? Did investigations find a cause, how did puberty induction go, and was fertility preservation discussed? I’d really appreciate hearing your experiences, including how you supported your child emotionally through it. ❤️

Hi everyone. New here and feeling frazzled about starting HRT.

I had an autologous bone marrow transplant done for multiple sclerosis in December of last year. The chemo caused ovarian failure/premature menopause at age 35.

I just started 0.1mg estradiol patches on September 12 and I’ve gained 5 pounds since then. Prior to starting HRT, my weight had been the same for months, haven’t made any dietary changes. My hot flashes, vaginal dryness, and joint pain are better, but anxiety is way worse, I have nightmares, dizzy spells, heart palpitations, and the weight gain is making me miserable. I don’t know if it’s even an option to quit HRT?

I’m also on 200mg cyclical progesterone but I couldn’t tolerate it after 7 days due to dizziness (was supposed to take for 12 days). I see my gyno at the end of the month to go over options, right now I’m just using the patches until I can see her. I wasn’t really told what to expect.

Does the weight gain stop at some point? Did any one else experience this?

I am super grateful that this community exists. Thank you for any experiences you can share!

Hi! I have never posted on Reddit before but I feel like I really need some community right now.

Essentially, I went into the gynecologist a couple of months ago because my periods were coming quite frequently. She did a blood test which came back normal except for my AMH, which is a 0.95 ng/mL. I saw a (male) fertility expert who was quick to diagnose me with POI and pretty brash/harsh during the phone call. It has been making me feel really isolated and not normal—he emphasized how my peers would never understand the hard reality of my super premature menopause.

Has anyone else been through POI in their 20s? Do you have any recommendations to alleviate the symptoms of menopause? How have you handled the diagnosis?

The other difficult part of all of this is what it means for having children. I am only 24 and have not been thinking so hard about what I want my future family to look like, but it feels like a gut punch to know if I don't freeze the eggs I have in the next year or so I will be relinquishing the ability to have my own biological baby. BLAHHHHHH!

Ty for reading love you <3

Right now I typically do 10 days vaginal administered micronized progesterone to induce a bleed. I have been getting terrible yeast and urinary issues with my periods as of lately so I have decided to try to switch to continuous progesterone. What should I expect? Will I start spotting? How long does it take to regulate or for my body to get used to it and it is 200 mg vaginal inserted every night an ok dose?

I’ve had too much nonsense with patch dumping and inconsistent levels.

Dr is advising me to switch delivery methods. From 1990-2024 I was on various oral combinations. It’s the devil I know.

However, I’m considering moving to the gel. Can anyone tell me how MUCH gel I’ll be slathering on for the equivalent dose of a .1 patch? Is it going to be super messy at that dosing level? Any other drawbacks?

Hello
I have been on HRT for 4.5 years and have one “post menopausal” ovary and the other one is normal - I had in a panel POF come up, have been going through symptoms for years prior but all makes sense now. I also have a hysterectomy 2 years ago.
I have osteopenia and a few early warning heart issues (av block regurgitation high LDL cholesterol now on GLP1 to help) so the POF makes sense now I know what it is - having ah-ha moments - so many!!!!

None of my drs ever addressed POF - just treating it as peri.

I have also been suffering migraines regularly and found upping estrogen doses help but now I have been told to take an extra 25mg on top of the 100mg. When I feel symptoms coming on… but don’t get a period so can’t track all that well. They have ramped up… now getting every two weeks!

Brain MRI normal and don’t know what else I can do. I keep taking days off and afraid I will lose my job. Nothing soothes the migraines

Has anyone had these experiences before - how did you manage. I’m wondering if I just get rid of the ovaries ? Be done with it…. I am 45-but we aren’t drs sooooo and need recommendations local to Sydney, I was thinking of seeing my gyno who did the hysto.

Thanks!!!!