Hi everyone, I was diagnosed with POF/POI at 20 due to my period stopping and a high FSH. No known causes/all genetic tests negative. I immediately went on birth control as HRT and didn't revisit the diagnosis until recently.

Now, at 34, I've been exploring my options and in an attempt to leave no stone unturned before closing the door on the possibility of bio parenthood, I've been going for weekly appts to have bloodwork and ultrasounds done to monitor for spontaneous ovulation (however unlikely) and see if there is any possibility of viable eggs (again, I am aware that this is extremely unlikely). So far (about 6 weeks in) the results have not been promising and have shown high FSH and no visible follicles.

The whole process has felt extremely singular and isolating. I haven't heard/read about anyone with POI/POF going through this, although I know there must be people out there in the same boat. Would appreciate hearing about any similar experiences (positive or negative). I'm grateful for this community as I've never met anyone in my life who has even heard of (let alone experienced) this condition. Thank you!

hi everyone, i got the poi diagnosis in 2024, this was after couple of years of health issues which im grateful to have overcome, in live in Africa.. Tanzania to be precise unfortunately we dont have doctors who specialize in menopoause or this condition, we also have a challenge with medication not very many are available so doctors prescibe birth control mostly, i felt no relief when i was on them, i recently went to see another doctor who did blood test and below are my results: Estrodial 43 and FHS 124, the doctor also prescribed me evra patches, so based on your experience and knowledge am i on the right track in managing this condition..

hi everyone, since my diagnosis i was part of a wonderful whatsapp community of ladies from all over the world with the same diagnosis, i exited accidentally and now im not able to find it, if any of you ladies know the community and can share a link to rejoin i will be grateful, thanks everyone...

Hey all, entered surgical menopause 6 weeks ago at 28yrs old. Currently on estrogen pills, plan on switching to the patch yet. No progesterone (dr said I wouldn't need it since my uterus was removed too) or testosterone.

It's been rough so far so I figured I'd compile some tips if possible from those who've been going through this journey longer than myself - are there any daily habits, lifestyle changes, or whatever else that you wish you'd implemented in your life sooner?

What I've struggled with the most so far is hot flashes, insomnia, & muscle weakness. Can't believe how sore my arms felt after just a few mins of whisking some batter yesterday!

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 recently started cyclical HRT in June. I started with 0.05 mg estrogen and just moved up to 0.075 mg, with a goal to move to 0.1 mg estrogen next month. I am on 12 days of 100 mg progesterone.

The first month, I had what seemed like a lighter period bleed 6 days after I started taking progesterone that lasted 4 days. The second month, I had spotting start 5 days after I started taking progesterone that lasted for 5 days. I didn’t ovulate the first month and it didn’t seem like I did the second one.

My questions: should I be getting a regular withdrawal bleed? What is the reason people bump up to 200 mg progesterone? Does the fact that I’m getting bleeding 5/6 days after i start progesterone (and before I finish it) mean anything? I want to make sure I’m getting the protective benefits of the progesterone.

My new REI doctor supposedly knows about POI but just said I can follow up next year or earlier if I have problems so I feel a little lost (and like I maybe need a new doctor, not that I’m likely to find a more knowledgeable one). She said it’s fine to stay at 100 mg progesterone and wasn’t worried that I didn’t have much of a withdrawal bleed this past month.

I started 0.4% 2mg a day testosterone cream in mid July, and I lowered my estradiol dose from 0.1 to 0.075 about two and a half weeks ago. I’m now having increased hair loss in each shower. I’ve had hair loss before from starting HRT, tellogen effluvium, and it was pretty distressing for me. I want this increased hair loss to stop soon. Any ideas which change could be the culprit? Thanks in advance!

Hello. I am pretty tan and recently I have been told I'm getting fairer or others said "paler" I'm only 2 months in. Are you guys experiencing the same thing with estrogen/progesterone (cyclic)? Thank you!

Hi all,

Postmenopausal since 39, now just shy of 42 and have started a new HRT regime (I was prescribed something ineffective that caused many side effects initially in my 30s). On the .1 estrogen patch twice a week. A couple months in and this part is going well. I have a uterus and so have been prescribed progesterone 200 mg 14 days of the month. I have not menstruated in 4 years and have not experienced any breakthrough bleeding (though before I started the patch I was producing no estrogen naturally so maybe it will take a while for there to be enough to thicken my almost non existent uterine lining). I’m finding the progesterone is not agreeing with me. When I take it I sleep for 10 hours and wake up groggy and nauseated.

I understand that I have to take the progesterone, but am wondering if there may be another option. For example, I read that you can take it vaginally and not experience the sedative effects or nausea. Though I have also ready there are no studies showing the effectiveness of this “off label” use. Any insight would be appreciated.

I always thought going months without a period meant I wasn’t ovulating

Long story short I went about 1.5 years with zero estrogen and then started the lowest dose and have been slowly increasing over the last 6 months (because doctors are idiots 🙄).

Anyway, after about 3 months of being on 1.5mg of oral estrogen a large tattoo I have on my leg is totally freaking out, itching, raised, and red. I know this isn't uncommon and not necessarily related to hormones. I've had little bits of it flare up for a few days here and there over the years but this one is the mother of all flares. Google said there was a correlation with hormone therapy and I know estrogen is closely linked to the immune system so I'm curious if anyone has ever experienced this after starting HRT?

FWIW I have developed a ton of food intolerances and lupus since POI and I definitely think there is an immune system link.

Thanks!

Just wondering if anyone ever got WGS/WES or other genetic testing done to figure out if there was a reason for their POI/POF? (besides the typical testing that is done at diagnosis)

Was just curious if anyone found any results at all (whether or not they definitively pointed to your diagnosis or not)?

Edit: I think I should have specified I meant other testing besides for karyotype for Turner or mosaid Turner, FMR1 for fragile X, 21-hydroylase ab, thyroid peroxidase (TPO), ANA.

I was tested for the above at diagnosis and at this point it doesn't change anything but was offered whole exome sequencing (have also heard there is specific POI genetic panels and was debating doing this more so out of curiousity not that it will change anything).

Anyone else here who simply never got a period or went through puberty at all?

I was diagnosed when I was 15 due to never getting a period and feel like the experience of being diagnosed as a teenager is completely different from being diagnosed later in life. Being diagnosed so young meant I got to adjust my life expectations early but I felt very alienated from my female peers and still do. I'm 26 now and often feel like a child who didn't get to grow up and also an old woman at the same time if that makes sense. It is also confusing because much of the information out there about POI seems to apply more to women whose ovarian function stopped early, not to women who have never had functional ovaries to begin with.

Looking for others who might relate, though I know it is not the most common POI experience.

My ovaries failed in my early 20s and it was not a fun experience, but thankfully I caught it pretty quickly and was able to figure it out and get on HRT within 2 to 4 years.

I am currently on non-cyclical HRT. Both so that I have a will to live (girlies, if you feel like your mental health crashed and burned when your ovaries failed, you are NOT CRAZY!) and to keep my heart, brain, and bones healthy long term. My health is really important to me.

HERE IS WHY I’M HERE:

My doctor recently told me that I do not need a DEXA scan until I’m 50 to 55? He said as long as I’m on HRT I don’t need to worry about my bones…

Ladies, what have doctors told you regarding bone density scans? I want to stay strong and healthy and osteoporosis is much harder to undo than it is to prevent…. I don’t think I need to run out and get one tomorrow- but waiting 20+ years to even CHECK on my bones density sounds wrong negligent to me???

TLDR: how early and how often have your doctors ordered bone density scans? Why?

I was diagnosed 2 years ago at 36 when I had insurance and wasn’t given a lot of information just 3 months supply of bc. I hadn’t had a period for a good 5 years and now realize I should have probably been on hrt. Does anyone have experience with treating this or getting hrt without insurance and cheap?

Is there evidence online that this method is safe and what for?

I'm am ttc and want to make sure I have a safe dose of estrogen.

Im using 0.05 mg estrogen patch. Should I increase my dose?

This may be completely random, but I’m waiting for a call back from my 18 yr old daughter’s doc. She was diagnosed with POI one year ago. She is currently on estrogen and progesterone replacement therapy. In the last 5 months, she has developed constipation, major bloating and has gained 20 lbs. she went to the GI doc and they did blood work and a CT scan, everything came back normal. Would an endocrinologist be the next step for her? She is so uncomfortable and miserable, and I know this isn’t normal. Thank you for any advice!

long story short: I’m in the middle of an official diagnosis but after my bloodwork results it’s pretty clear it’s not PCOS/PMOS but POI. my gyno prescribed birth control for the time being and said it would help treat my symptoms regardless. I’m only 33 and he recommended BC in either diagnosis to protect my endometrial health. Ive never been on BC so I’m enticed to try it but should I just go for HRT? which will be more beneficia? anyone have success with BC? I was prescribed Junel FE at the lowest dose, I’m not worried about getting pregnant im worried about these freaking hot flashes 😭 any insight would help! thanks!

I'm switching from estrogel to patches. I'm used to taking three 1.25mg pumps of gel (totalling) 3.5mg daily. I'm switching to a 0.1 2× weekly patch.

Am I about to be decreasing my dose or will this be equivalent (I'm scared lol)

Hi all! I’m curious to hear what your dose is with HRT. I’m currently 37 and my HRT has been bumped up to 3 pumps of oestrogen gel and 400 mg of progesterone. It’s increased significantly to help with my symptoms and I can’t help but to feel like I’m so young and have to be on this dose and for what seems like it could be for the rest of my life! Just want to see if there’s anyone out there I can relate with :)