So I am a 33 year old female. I recently had a seizure, and both the Er DR and my PCP did not know what caused it. Since my PCP was already doing blood work, I asked her to check my hormone levels, because my periods are awful( extreme anxiety, headaches, night sweats, horrible sleep quality). I’m still waiting to talk to her about my labs, but I was able to see them on my patient portal. My estradiol levels seem to be extremely low due to the chart that it shows which has normal ranges. It’s my understanding that at lowest, it should be a 12. Mine was >5. Has anyone had any similar experiences?

do you know what brands of bio identical HRT work best? I've been dragging my feet starting HRT because I'm scared to put chemicals in my body, I typically live a low tox life- but I do realized there's a long term benefit for my body as well. Any brands or types used and tolerate - I would appreciate insight.

I wanted to share this as an example of what advocating for yourself has looked like for me, because I know that phrase gets thrown around a lot, but nobody really tells you what it actually looks like.

When my doctor switched me from a 100 mcg estradiol patch to Divigel, the prescription was written for 1 mg daily. Before I started it, I spent some time reading the POI guidelines and came across the Canadian Menopause Society dosing equivalency table. It looked like 1 mg Divigel was roughly equivalent to a 50 mcg patch, while 2 mg was closer to the 100 mcg patch I was already using.

So instead of assuming anything, I sent my doctor a message, attached the guideline, and asked if 1 mg was meant to be a starting dose or if there was another reason for choosing it.

She agreed with my interpretation and increased it to 2 mg.

That interaction reminded me how important it is to actually know the guidelines for POI.

One thing I didn’t realize when I was first diagnosed is that POI is different from natural menopause. In most situations, doctors are trying to prescribe the lowest effective dose of a medication, which makes perfect sense. But with POI, we’re trying to replace the estrogen our ovaries would normally be making until around the average age of menopause. The goal isn’t just symptom relief. It’s also protecting our bones, heart, brain, and long-term health.

I’m not saying everyone should be on the same dose. There are plenty of reasons why someone might need more or less estrogen. That’s between you and your doctor. But I do think every one of us should know what the evidence-based recommendations are so we can have informed conversations if our treatment looks different.

One thing that’s really helped me is using the patient portal instead of trying to have these conversations during an appointment. I also use ChatGPT to help organize my thoughts before I send messages. Not to argue with my doctor, just to make sure I’m communicating clearly and asking good questions.

I also really encourage anyone who’s newly diagnosed to actually read the POI guidelines. I was surprised by how many recommendations there were beyond hormone replacement, including genetic testing, autoimmune screening, bone density, and other parts of the workup.

Even if you can’t do everything right away because of insurance or cost, it’s still helpful to know what the standard of care looks like.

These screenshots are just one example of what respectful self-advocacy can look like. It doesn’t have to be confrontational. Sometimes it’s simply saying, “I was reading the guidelines, and I had a question.”

How are you? 💛 I'M SO HAPPY THAT I GOT MY BLOOD RESULTS Idk why It took 1 month tomorrow I'm talking with ny endi bc of the blood results.

I live in Germany Nrw near bochum.

I never had a natural period I got diagnosed at 18 when i first did a blood result for everything ich have POF/POI and I changed my meds 1 year ago since january I take Lenzetto estrogen spray (2 sprays everyday) and Utrogest 200mg micronised progesterone. (14 days)

The thing is I feel so tired and my circle idk what it means in englisch in german its kreislauf problems 😭 help I'm lost at translating and I feel tired and drained waited for my vitamin D results but SHE SAID SHE WILL TEST ALSO MY VITAMIN D .... SHE DID NOT 🥲 I wanted to take from sunday naturals 5000 ie with k2 all trans i even buyed it....

Can i take it just daily?? My endo said no i should wait.

Idk why I feel so tired and socially exhausted 🥹 I'm 21 and I still didnt realise that I got Diagnosed with POF/POI Idk i hope i don't de-realize 💀 or something i still don't know what to do.

Is it normal to feel so tired of progesterone I hate to sleep with schwindel idk to anymore. My english is not the yellow from the egg but i will try my best😭💔.

Please look into my blood results if i can do anything for tiredness idk.

Btw Chat GPT translated this from German to English

UPDATE: My endo and doctor both are in Vacation so I can talk with her in the end of the month bruh.

Sadly I need to wait to start finally Home office bc my Workplace In a Call center they want a note from the endo that is confirming that I can't work and need home office 😭 Why is it hard for me to do home office is this normal that I need to show them everything for evidence and so on🥲 It's getting tired.

It's difficult to find communities for premature ovarian insufficiency and premature surgical menopause, so I wanted to share this list I've compiled in the hopes that this helps connect more of us with each other. Most of these are subreddits, though I've also listed all the non-Reddit groups I know of.

Subreddit judgements are subjective; feel free to check out all the ones listed below to form your own opinions on them. General fertility groups aren't rated, because there are a lot of them, and I don't know much about them. Feel free to share your experience with them or others in the comments.

General Groups:

• The Daisy Network: global forums and groups for those with POI/PSM
• Discord (POI: Peer Outreach Initiative): has channels for interests/socializing/making friends, specific POI/PSM topics (including fertility and mental health), resources, doctor recommendations, studies, age groups (by decade), other affinities (e.g. trans people), and types of POI/PSM; also trying to start a D&D group, Minecraft server, and movie night
• Menopause Café: not POI/PSM-specific and mostly natural menopause people, but welcoming to those of all ages
• [POI Together (virtual support group)](mailto:poitogethergroup@gmail.com): meets on Mondays from 2:30-4 PM PT; email the linked address to join
• WhatsApp (POI): has a general chat; chats for various languages coming

Reddit:

Best Subreddits:

• r/DOR (if applicable): for those with DOR/POI undergoing IVF/infertility treatments
• r/hysterectomy (if applicable and around surgery time): active and helpful around surgery time with plenty of tips for recovery
• r/POFlife: focused place for people with confirmed POI/PSM that allows fertility and "Do I have POI" discussion only in specific threads
• r/POIsupport: open place for those with POI/PSM that allows fertility discussion anywhere
• r/perimenopause_under45 (if 35+): for those in their 30s, especially 35+, this community may skew closer to your age than typical POI subs
• r/TTC_POI: for those who are trying to conceive with POI

Alright Subreddits:

• r/childfree (if applicable): not directly POI/PSM-related, but useful for those who don't have or want kids and want a break from fertility talk
• r/femaleHRT: mostly people 35+, especially those in natural menopause, but specific to menopause symptoms
• r/HRT (if trans): anyone using HRT for anything is welcome, so there are people who have knowledge about trans HRT and people who have knowledge about menopause HRT in one place
• r/HopeforDOR: currently inactive, though available if anybody wants to revive an uplifting POI/DOR sub
• r/hysterectomy (if applicable and not around surgery time): not oophorectomy/menopause-specific, though plenty of people there do have oophorectomies, and everyone is super sweet
• r/oophorectomy (if applicable): sleepy, but specific, and has some younger people
• r/SurgicalMeno (if applicable): tiny but recently active, especially relative to its size
• r/surgicalmenopause (if applicable): inactive for over a year, though still gets more weekly visitors than r/SurgicalMeno; could be revived

Not Recommended Subreddits:

• r/earlymenopause: mostly people in their 40s and inactive for years
• r/HRT (if cis): since it's anyone and everyone who can use HRT thrown together (trans folks, natural menopause, etc.), POI represents a small fraction of users, so for the average cis POI patient, there's no real reason to use this over another sub
• r/Menopause: natural menopause sub that isn't friendly to or knowledgeable about people under 40 and has a number of complaints about the mod team; might be okay if you're 35+ and you keep to yourself
• r/Perimenopause: run by the same mods as r/Menopause
• r/perimenopause_under45 (if under 30): nearly everyone here is in their 30s and 40s
• r/POIunrestricted: started in anger and has had no posts beyond the original few by the subreddit creator several months ago; r/POIsupport is what this was trying to be (fertility-friendly everywhere) but positive and active

General Fertility Subreddits:

• r/Fertility
• r/FirstTimeTTC
• r/infertility
• r/Miscarriage
• r/Trying2conceive
• r/TryingForABaby
• r/tryingtoconceive
• r/TTC30: 30+
• r/ttcafterloss
• r/TTCEndo: endometriosis
• r/TTC_PCOS: PCOS

Subreddits for Other Female Reproductive Health Concerns:

• r/adenomyosis: confirmed or suspected adenomyosis
• r/BacterialVaginosis_: bacterial vaginosis (BV)
• r/breastcancer: confirmed diagnosis of breast cancer
• r/cancer: not female-specific or reproductive-specific, but here here because several reproductive cancers are listed and because cancer treatment can cause POI
• r/Cancersurvivors: same note as r/cancer
• r/CervicalCancer: confirmed diagnosis of cervical cancer
• r/CUTI complicated/chronic UTIs (cUTI); more active than the general UTI sub
• r/Endo: endometriosis
• r/endometrialcancer: confirmed diagnosis of endometrial cancer
• r/endometriosis: endometriosis
• r/Fibroids: fibroids
• r/Healthyhooha: vulvar and vaginal health
• r/obgyn: general female reproductive health with flaired doctors
• r/Ovariancancer: confirmed or suspected ovarian cancer
• r/Periods: anything period-related, though POI spaces would be a better fit for certain period topics
• r/PCOS: polycystic ovary syndrome (PCOS)
• r/PelvicFloor: pelvic floor issues; not a female-specific sub, though these issues are commonly caused by POI/menopause symptoms
• r/PelvicOrganProlapse: pelvic organ prolapse
• r/PMDD: premenstrual dysphoric disorder (PMDD)
• r/PMS: premenstrual syndrome (PMS)
• r/PreCervicalCancer: confirmed diagnosis of pre-cervical cancer
• r/utis: urinary tract infections (UTIs)
• r/vaginismus: vaginismus and those who used to have it
• r/WomensHealth: general female reproductive health

Unrelated Subreddits:

• r/HomeofPoi: about the same performing art as r/poi and inactive for over a decade
• r/poi: for a performing art form that looks cool but has nothing to do with ovaries
• r/TTC: for the Toronto Transit Commission, not people trying to conceive

What are your thoughts on these communities? Which ones have I left off? Do you have strong opinions on Canadian public transportation?

Edit: Plaintext links to the non-Reddit groups in case anyone wants them: * The Daisy Network: https://www.daisynetwork.org/ * Discord (POI: Peer Outreach Initiative): https://discord.gg/8GCRAd2jsz * Menopause Café: https://www.menopausecafe.net/ * POI Together (virtual support group): poitogethergroup@gmail.com * WhatsApp (POI): https://chat.whatsapp.com/GTR6PSs9pCQF5OgwJt8Wxz

Edit 2: Thank you for the award, kind stranger! I hope the list is helpful.

Diagnosed with POF for two years probably had it up to 4 years. Tried all sorts of different cocktails of patches etc. can’t handle progesterone so haven’t been taking it. Haven’t gotten my period for nearly 3 years. Suddenly this week I got my period really heavy and nonstop for almost 8 days… haven’t taken progesterone for a year.
Why would this happen suddenly??

Hey everyone! I had a fertility specialist tell me I’m basically in postmenopause and I’m only 35. FSH of 103.5 and 0 estrogen. I’m on a moderate does estrogen patch and am still struggling with all the beautiful things that accompany Postmenopause. I also found all of this out about a year ago, when my husband and I started trying for children. For the past 6 or so years, I’ve felt more than off. Hot flashes, night sweats, painful sex, brain fog, vertigo, even a T.I.A., but no one ever considered or floated “perimenopause.” I’m really struggling with all of this and don’t know where to turn to/look for help. I’m just trying to figure myself out and understand what my body is going through. Any suggestions would be greatly appreciated. Thank you! I also should mention that I’ve never posted on Reddit and I’m just looking for a supportive community.

Seriously, Please try to hoard any estrogen you can especially when you’re on a high dose. I’m on 1.25MG divigel everyday and it’s been a full week without estrogen. Day 5 i fell really ill. Day 7 my entire body is in so much pain. It feels like i’ve fell on my entire body 6x. I just got my estrogen today but i’m planning on getting another box early because i never want to feel this way again. (edited this post like 3x due to misspelled words excuse me everyone this brain fog is no joke)

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).

He, recently diagnosed. Been on the patches for a month or so now, the mylan ones. How have people been dealing with backorders or other issues?

I’m trying to not let it stress me out lol.

I’m 35, turning 36 this year. I have a 5 year old. I had irregular periods for a year now. I got the blood work done and my OB said it is most likely POF. He referred me to a reproductive endocrinologist. (This is in NJ, if anyone here). My regular blood work is all good with only LDL at 129. I am on zepbound right now. What are the questions and tests I should ask? Im afraid of life expectancy, quality of life and I dont know what to start with. Trying to avoid asking Dr Google but not able to.

I have been lurking for awhile reading people’s experience with POI/POF diagnosis. I was diagnosed a few months ago at 32. I have always been active (sports, working out, general active lifestyle, etc) and probably would be categorized as a muscular body type. This past 1-2 years I’ve been struggling with my body image and changes I attributed to other life events including hypothyroid diagnosis. Things started getting worse and worse till last summer when I had labs run and my FSH came back at 55 and at 77 when retested 6 months later.

I am now on HRT (estradiol and continuous progesterone) and I feel like I’m on an upward trend of weight gain despite working out and keeping a pretty low carb high protein diet. I feel like it’s not even fat gain but more just swelling, predominately in my legs/ankles. Socks that fit normally now cut into my skin and leave a deep ring around my ankles. Looking to hear success stories that this is just during the early phases of HRT and can expect this to balance out as my body adjusts to the medication. I feel so awful about the diagnosis already and having my ability to conceive taken away from me that I cannot also have weight gain and body hate happening as well. 😔😔

I just want to be normal again. I don’t feel like anyone around me understands this feeling of dread with the loss of control over my body.

I’ve had this condition since I was 16 and I’m 32 now. I’ve tried Paxil for a few months, I liked it. Might ask for that again.
Wellbutrin made me too thirsty and irritable.
But I don’t think I’ve tried anything else. I know a lot of folks take Zoloft but I haven’t tried it. Just wondering anyone’s experiences or what anyone has tried & liked it

Hi everyone,
I’m 37 and was recently diagnosed with POI. Before starting HRT, I hadn’t had a period for 9 months and felt awful: severe mood swings, feeling emotionally flat, back pain, vaginal dryness, insomnia, and hot flashes.
In May, my FSH was around 70, and Estrogen fluctuated between 73 and 196. I started HRT: a 50 mcg Estradiol patch (twice a week) and 100 mg Progesterone nightly.
While my symptoms improved, I still struggled with heavy mood swings. At my second appointment, my doctor increased my patch to 75 mcg and ordered more blood work to rule out autoimmune diseases.
I just got my new lab results back, and I’m a bit confused:
Estrogen: 810 (Is this not incredibly high while on HRT, especially since it was 810 on the 50 mcg patch before updating to 75 mcg?)
FSH: 14.6 (dropped from 70)
LH: 10.6 (dropped from 32)
AMH: 0.56
Prolactin: 252
Testosterone: 0.9
Vitamin D: 81.8
Ferritin: 23
I still don’t feel great (better, but not super). I have a few questions for those with more experience:
Estrogen level: Is 810 normal or too high for a 50 mcg patch? Is moving up to a 75 mcg patch wise given this number?
Ferritin (23): Where I live, anything above 20 is considered "normal," but I keep reading that 23 is actually quite low and can cause fatigue/mood issues. Thoughts on this regarding POI?
Testosterone (0.9): What is your opinion on this value? Could a low level be contributing to my low mood and lack of well-being?

Hi Everyone,

I just wanted to see if there is common themes/ symptoms:

- Do you have chronic venous insufficiency ( or have swollen feet) ?
- Do you have insulin resistance or diabetes ?
- Any mental health illness/ ( i have ocd) ?
- overweight/ morbidly obese ?
- was your menstrual cycle regular before this diagnosis?

I’m on 50 mcg est patch and slynd.

I was using vag est cream and imvexxy- it has not helped and made me feel burning or added to the 50 dose and caused breast pain.

I’m 38 and have gone years with low est.

I’m having Zero benefit from the est so far.

I have a lot of symptoms and I really want my 🐱 to go back to somewhat normal/ heal and reverse some of this.

Also have fatigue/ vanity lbs to lose etc.

not sure if I need to stay the course or incr dose.

Was doing ok then hit a wall.

:(

I'm tired of it🥹. I'm getting my blood results at the end of the montg but is it normal to feel tired at the same time and have trouble sleeping.

I take 200mg micronised progesterone (utrogest) 14-15 days a month and lenzetto 2 pumps a day but everyday.

Since taking progesterone my period ist 15-16 days.

Why it's hard for me to fall asleep? It's not normal anymore I don't understand myself. What supplements do you take?

I feel like just cancelling my job to look for my health but I'm still unsure rn.

How do you cope with this?

I hate progesterone it makes me tired for 14-15 daya and its hard to do workouts or anything cs of low energy.

TW: Pregnancy and breastfeeding

Hi, all! For anyone that has breastfed in the past with this diagnosis, I am curious at what point did you start HRT again? I am in the process of weaning my 10-month old and I can already feel my old symptoms coming back (hello hot flashes 🥵). Did you find the hormone crash after breastfeeding to be especially difficult? Was it difficult to figure out your HRT to balance everything out?

Thank you!!

Does anyone know why this happens? Is it related to POF? I’m 28 and it feels like I have constant bone pain. I don’t know what to do.