POFLife members: while this sub is focused on life outside of fertility, we feel inclusion in research is important for this often overlooked disease. For this reason, this post has been approved.

Thank you, Mod Team

Are you and your partner navigating infertility? 💗

We’re inviting Australian individuals and couples experiencing infertility to take part in a Deakin University research study exploring the experience of infertility.

Infertility is a unique experience and it can affect partners in different ways. We want to better understand couples’ experiences throughout this journey, including the psychological impact and how partners support each other along the way.

What’s involved?
Participation is straightforward and can be done from home:

• Online surveys (~45 minutes) capturing your fertility experiences, emotions, and your perceptions of your social supports
• An optional online observed conversation task for couples (~1 hour 15 minutes)

If you and your partner are currently navigating infertility, we’d love to hear from you!

Taking part is entirely voluntary.

Find out more and complete the eligibility survey via link below:
🔗 https://researchsurveys.deakin.edu.au/jfe/form/SV_0VDwYdRivCrz3VA

If you know a couple who may be interested, we’d also really appreciate you sharing this post with them!

What patch dose is 1mg/day 0.1% estradiol gel roughly equivalent to? She told me it’s “close to” the 0.075 patch, but that’s not what I’m reading. I know it’s not a spot-on comparison, but any advice is appreciated.

Does anyone know of any doctors specializing in POI in the DC area, including Virginia or Maryland? It's almost open season time for switching insurance and I'm so tired of the blank stares and shoulder shrugs and outright gaslighting I've been getting from doctors the past few years.

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 just got an IUD and 1mg oral estradiol this past week. Just now I posted on a POI Facebook group and someone commented telling me to immediately contact my doctor and get off of oral estradiol because of blood clot risks. I had heard of it beforehand, and it seemed like more of an uncommon side effect from what I read at the time, but after that FB comment I’m scared 😭 they said I could get a pulmonary embolism, even.

Are blood clots and embolism common enough of a side effect that I should truly be worried??

Ladies

Bit shocked to know that I'm a carrier since there is no family history of early menopause or any neurological or autism in the family
Those who have POI and premutation for Frag X, what other symptoms do you have other than POI if any ?

My brother was recenly diagnosed with mild hemophilia which is also X-linked

I have a 2 yr old son, who is perfectly fine but I'm worried. He has hit all milestones , is very smart and hasn't shown any concerning signs. We will get him tested for sure but I was TTC, after this, I'm concerned.

RE near me wasn't very helpful so I know IVF and PGT is very unlikely the road for us, the next RE is about 3 hrs away.

POI moms with sons, how are you all doing ?

Not surprisingly, my DEXA came back with osteoporosis of the spine and osteopenia of the hip.

I am 40, I found out I had Diminished Ovarian Reserve back at 31 but the doctors only talked about in the context of fertility and never about long term health. I went on to have 2 children but breastfed them and didn't know how the suppression of estrogen + my low estrogen state anyway was going to affect me. As a result, I didn't start HRT until Dec 2025 when I was 39. Years of bone loss could've been avoided with proper medical guidance.

Anyway, I got my diagnosis this Monday. And I upped my patch from 0.075 to 0.1. I have been doing resistance training with dumbbells for 10 months now but may be I am not challenging myself enough, so I am going to get a personal trainer. And also up my calcium/VitD etc.

This week has been very rough on me mentally. Looking to hear stories of reversal to get to at least osteopenia without medication. I'm afraid to take medication at this age. Please shower me with hopes!!! Thank you.

Does anyone here have POF and Hypermobile Ehlers Danlos Syndrome?

I have a bone density test coming up next week to see where I'm at without HRT. (I'm 34 for context) But the issue I'm having is the sublexing and dislocating aren't from lack of bone density, it's from weak ligaments.

Is anyone else in my boat?

MIDI today told me I’m SOL and they don’t offer injections. They want me to go on injections instead of trying to up my topical estrogen which is really irritating. I haven’t tried the vaginal ring yet I’m just not sure how much it would help me honestly.

They’re trying to refer me to endo but of course that’s scary because then I have to advocate for myself to another doctor that might not be ok giving me high doses of estrogen. 😭

Just got back from a regular nurse appointment to get the progesterone pill which I use for irregular periods, and I got told my hospital letters say I have ovarian insufficiency so I should consider HRT if I have menopausal symptoms instead. And I have no idea if I have menopausal symptoms because a bunch of thing that are considered symptoms are just things I've maybe always had?

It's been several years I've been going back and forth to the drs with absent periods. I used to be super regular, then my cycle began lengthening, and I skipped some, and then had one year where I went about 5-6 months without a period. At first the dr was like 'sometimes that just happens' but after I pushed I got refered to a gynecologist who did some bloods and then sent me a letter saying I wasn't ovulating come back if I ever wanted kids basically. But I wasn't happy still having absent periods and my dr wrote to them again and I was told to take progesterone to protect me from cancer risk if I wasn't having a period. I was super scared of the mental health effects (I get visual aura migraines hence progesterone only pill), did a lot of reading and tried the 10 day method. This plus cutting sugar and exercise seemed to restart my periods and I was able to stop using the pill and have periods. After a few months the cycle sort of got longer or weaker maybe- like my body wanted to have a period but it wasn't happening. Another drs appointment following a seeming sensitivitiy to sugar (headaches before and after eating) and I was told the gynecologist had said I had qualifying criteria for PCOS, but at the time I was getting periods and my blood test didn't show qualifying hormone levels (though my period usually shows up more if I cut refined sugar). I've had another spell where after cycles getting longer I skipped again- before getting a fairly normal feeling period (started taking inositol which seemed to help with the blood sugar stuff) so asked for another progesterone prescription to do the 10 day method, and after I left I got a message from the nurse saying after reviewing my hospital notes (to officially record PCOS) the condition I had was ovarian insufficiency which meant weak/no ovulation and I should consider HRT for bone protection if I got menopausal symptoms.

Now I'm just really confused. Because if that's the case then I got diagnosed like 2 years ago but noone explained or discussed HRT then I just got a letter saying no further action unless I wanted kids. And I've since then been able to have periods for several months at a time- typically if I'm super strict on diet, exercise etc.. The PCOS thing seemed to make more sense.

But now I've been told to consider HRT if I get menopausal symptoms I'm questioning if I even know what those symptoms are. I get flushes now and then, much more rarely since cutting sugar. I'm always tired but that feels like it's been my permentant state most of my life. Brain fog too is v common for me- I've had periods of depression since I was a teen, and I'm in therapy and it's been going really well. I'm also autistic so anxiety is common, and therapy has definitely reduced it. I did however read some stuff on here ablut itchy thighs which I didn't know was a thing but I do get- my skin has been very sensitive and reactive the past couple of years.

I have no clue if my general life classes as menopausal symptoms or not, because my periods have been irregular for like 6 years at this point. And with the mixed messages I don't really trust the apparent diagnosis because why did the consultant not mention HRT or basically anything beside just saying I don't ovulate. And in following hormone tests I've had some normal results I think. But I also am really scared if it is POI because HRT is an unknown zone, but what if stuff I've attributed to mental health etc has more if a biologicial basis? Is my back pain desk work or weird hormones? What if it's not POI and HRT screws my mental health after therapy has finally got me to an okay zone? It's so confusing.

This is basically a really long info dump to ask people if they have had similar experiences, and if my experience does seem like POI with awful communication or if maybe I should be doubting the diagnosis. I know I need to go back to the dr and ask a bunch if questions I'm just not sure I trust any answers they may give.

Hey all!

So I've had POI for 3 years. For unrelated reasons, I've been offered a hysterectomy, which would be great as I don't tolerate IUD insertions/removals and cervical procedures well AT ALL, and this would stop it.

My surgeon also offered to take out my ovaries while in there. She said it was optional. Since my ovaries don't work anyway, the benefit would be prevention of any future complications that could happen like cancer or otherwise (I have had breast cancer and though it wasn't BRACA genes, perhaps better safe than sorry).

However, we discussed that my ovaries maybe could theoretically still be putting something out, but there's no way to know. Back when I was diagnosed, my blood tests put my levels so far into menopause range it made my doctor's head spin. Because I've had breast cancer, doctors are extremely hesitant to maintain my HRT and certainly don't want to increase it. So I worry a bit I'll be making things even worse by removing my ovaries. Any thoughts or experience with this would be so helpful.

Thanks!

This was the only silver lining to me of having POI untreated. I had no bleeding for 4 months. As someone with endometriosis and adenomyosis this was like a dream come true, but obviously also awful because of all the POI symptoms.

But since getting on HRT I started having my periods again. I started by taking 12 days of Utrogestan 100 and 1 pump of estrogel and my periods quickly came back during that. Then it stopped when I stopped the prog and it started again after the second time of prog.

Then two weeks ago from now I had a hysteroscopy for a polyp removal. I had what seemed like a period a few days after and now 2 days before stopping the prog after 12 days I am bleeding heavily again. It is so tiring.

My iron has never been higher than 30 even with iron infusions.

I am so tired of having to buy new pants every 2 weeks at this point. Don't get me wrong I have been having super heavy period since they started so this is nothing new, but the 4 months break made me realize how miserable it makes me. But before POI at least I had Txacid as a med to fall back onto so that the periods is not that heavy, but I do not have it anymore now that I am on HRT... so it's just full blown super heavy ones

I cannot afford getting an IUD right now.

I do 1 pump of Estrogel (roughly like a 0.025 patch equivalent) every morning and take 100mg of Utrogestan 12 days (day 16 to 27 abt that). I started HRT in mid-August. I know my estrogen dose is still low, but my doctor thinks it should stay like that (it's not right, I know...).

A few years back I was on daily prog only BC which made me bleed every single day. This makes me scared of trying to take the Utrogestan everyday... Not sure if this would be the next logical step ?

I would like to keep my uterus as I will start fertility treatments within the next two years (my AMH is still kinda ok-ish) but I really really do not want to have a bleeding.

If I would not want to give pregnancy a try hoping it works I would have asked for a hysterectomy.

Any help or sharing of experience is very welcome, thank you

Hi, sorry for tmi. Sleeping with a new partner and noticing some strong discomfort in certain positions during penetration. It’s not every angle, and I don’t think it’s a dryness issue. Almost feels like he’s pressing on a bruise or nerve. It’s not my cervix.

I just know that people talk about pain during sex being connected to low eastrogen but I’ve never heard anymore describe the pain

Any advice welcome thank you!

Does the estradiol patch bloating really resolved within 2 to 3 months? I am on the lower dose.

How was the transition from cyclic to continuous progesterone for you ladies? What should I expect with bleeding, periods, etc?

I am 39yrs old and 5 months ago was diagnosed with POI. My diagnoses took some time even if I highly believe all started in 2020 or even earlier. I never had children but in a challenging marriage. 2 yrs ago i got vertigo and after being on medication, I continued having migranes and doctors couldn't find the cause of them. This year when I was diagnosed with POI, my gyno put me on BC ( I had to do this since doesnt cost me anything and because I was trying to avoid pregnancy ).

BC helped me eliminate my migranes but took time yo adjust. Definitely affected my depression even more and my anxiety.

Im 5 months in taking the BC in and recently my husband started being more loving ( he suffers from a lot of medical pbs so our intimacy suffered for 10yrs to the point that it got me depressed but I didnt give up on him and he told me to be patient). Anyway recently he spiced things up for me and without getting into too much detail and keeping it plain I got extremely excited and with that excitement a shooting to my right side of the head giving me the worst migrane. I thought ok it was just this time. Definetly took some time for it to subside. Well the situation repeated some days later and the migrane happened again.

Im so mad, I waited so long and now being intimate causes me migranes? What the hell.

Im making an appointment with my gyno to tell her but i was wondering if anyone experienced this whether on BC or HRT.

Hello all. I am 38 yrs old and on hrt.

I went to the dr just 6 months ago because I started having hot flashes.. I could not handle them 🤭😅 at the time I was missing my period 4 months. I been having peri symptoms for yrs.. I had my last daughter on my 30’s and I had a hard time getting pregnant.. at least 5 yrs. Ever since.. my periods have been crazy, sometimes light, sometimes very heavy, sometimes skip a month, crazy Mood swings as well as probably anxiety, getting overwhelmed easily.. pain in joins and hips for years. I work cleaning houses so I always blame my physical job.

When I wen to the dr bc of hot flashes and missing my period my fsh came high.. post menopausal numbers so they put me a tag of “post menopausal” and put me in hrt. I have always had a period.. crazy but still.. and after starting the hormones i started bleeding monthly but my dr keep telling me i was NOT supposed to. So they keep adjusting my dose and did an ultrasound.. everything was normal 😑 but they insisted I was not supposed to bleed.
So I was taking 2mg estrogen and 200 progesterone at the time.
I went to another dr looking for a second opinion and she told me I was in peri menopause and my fsh was high bc I was missing my period at the time 😰
I had so so many pms symptoms and she did a blood test.. my estradiol was thru the roof and I was low on progesterone. So she took me off the estrogen and send me to take 400 mg progesterone 🫠🫠
I am a week after and I can feel the join and hip pain slowly coming back.. what should I do?

How do I find out if it’s early menopause, perimenopause or early ovarian failure? I am 38.
Because I dr told me it was very important to take the therapy bc of future problems, osteoporosis, cardiovascular issues and the other one took me off meds .
She also told me hot flashes are because of progesterone, no estradiol like everyone thinks 😱😱

Those of you who got the IUD do you like it more? I’m SO tired of taking progesterone and the weird bleeding BS correlated with it.

Do you guys still bleed with the IUD? I’m Reallllyyyy debating getting one

I have been trying to find the appropriate dosage for me on the last few months after suspected POI after chemo treatments. I currently take 1.5mg Divigel (3x0.5mg sachets) and 200mg progesterone pill at night everynight for the last 2 months and I have been feeling better overhall but still not "amazing". My new gynaecologist suggested to stick to this dosage for a few months before making adjustments (maybe adding testosterone for my non existent libido) but she did say I should be taking 300mg and not 200mg for uterine lining protection as 200mg is not enough according to her. I have never heard of anyone taking this much? I have been doing quite a bit of research as well and it seems like 200mg is generally the rule? I dont think im even at the "max" estrogen? Curious what ppls dosages are and if you have ever tried testosterone what benefits did you get from it? Thanks!

Hi everyone, I need some reassurance or to hear from anyone who has gone through this. I have POI and for the last 6 years, I was on a cyclic progesterone routine where I took 200mg for the first 10 days of the month. Like clockwork, I would get a withdrawal bleed from the 14th to the 18th every single month.
My doctor just switched me to continuous progesterone (200mg rectally every day) because I want to stop having a period.
Today is the 18th (which is usually the very end of my normal period window). For the last few days, I only had light spotting after a bowel movement, but today I just went to the bathroom and I am suddenly bleeding heavily and experiencing cramping.
Has anyone else experienced a delayed, heavy breakthrough bleed right when they switched to continuous? Is it normal for the uterus to just "override" the continuous progesterone during the first month because of the 6-year tissue memory? How long did it take for your bleeding and cramping to completely stop after making the switch?
I’m staying consistent with my nightly dose, but seeing active bleeding is really throwing me off. Would love to hear your experiences! Thank you.

Has anyone had an ablation & did it help your bleeding?

I have been dealing with HRT for almost three years now and I’ve hated how it’s made me feel this entire time. I’ve been on every dose from 0.025 to 0.1+0.05 double-patched. The higher the dose the worse the irritability. Currently on 0.075, 100mg micronized progesterone vaginally and during the day (due to “paradoxical” response), and 2mg compounded testosterone cream daily. The testosterone has helped very much, but it’s doing all the work. I’m currently having hair loss, telogen effluvium, and if testosterone is the culprit and I have to stop it I’m back to misery. There has to be a deadline for how long I put up with this. I don’t know what to do. Please do not recommend antidepressants or an IUD. Any other advice would be greatly appreciated!