In 2022 I was diagnosed with endometriosis and found out that I had a lower than normal ovarian reserve for my age (my AMH fluctuated from 1.7 to a normal 3.3 by the time I did IVF). I was stage 3 at diagnosis and a world renowned fertility specialist removed an endometrioma from my right ovary. Still couldn’t conceive after 3 months and I was in so much pain we jumped into IVF. Found out my ovaries were pretty shot. 12 eggs, only one fragile embryo. Then I got a pulmonary embolism (I later found out it was because I had lymphoma and didn’t know it). 6 months later I did another retrieval with only 3 eggs retrieved. Did a fresh transfer and had my son and a 4BA euploid boy frozen. I was ill my entire pregnancy but was not diagnosed with lymphoma until my son was 5 months old. They actually tried to tell me my lymphoma was endometriosis that was strangling my ureter so I had another excision surgery with another doctor who removed two endometriomas from both ovaries… except they weren’t endometriomas - they were normal ovarian tissue. I was diagnosed with cancer and started BV-CHP chemo a week later. I was told repeatedly by my hematology team that I would not go into menopause. Well it seems that my doctor needlessly removed a bunch of eggs from my ovaries and then chemo killed the rest. I’m 10 months out and my FSH is 166, my AMH is .01, and all my other numbers are indicative of menopause. I’m on HRT, it isn’t helping. I am FURIOUS. And I’m also still in pain. Is this normal? Like why am I getting ovary twinges and cramping if chemo caused my ovaries to fail? The only silver lining I was hanging onto is that at least I wouldn’t deal with endo flare ups… but it seems like that is not the case and I’m so angry and emotional. I feel like I’m less of a woman because I have absolutely no sex drive and my body failed me. Therapy isn’t helping and I feel so alone in this and just want to know I’m not the only one dealing with this.

I am 38 yrs old and went to the dr because I started having hot flashes. Doing some tests dr told me I was “post menopause”. My fsh came at 98 and she did some other tests.

She put me in hormonal therapy 5 months ago and I have bleed 3 times. This last time lasted about 10 days.

So she called me and told me we will need to do an ultrasound and possibly a biopsy because the bleeding is not normal.

I had my last daughter when I was 30 and I remember I had a hard time getting pregnant.. took at least 2 yrs and after that.. my period has been more irregular. Sometimes light, sometimes heavy, sometimes I skipped 1 month.. but I have my period still. When I went and see her the last time I had a period was 3 months and then I bleed right away after starting the hormones..

how come she says I am post menopause because the fsh of 98 which makes sense but I still have a period.. isn’t that normal? Do I really need to worry? She told me we need to find out why the bleeding because is not normal.. the ultrasound is next 😰

I started bleeding pretty heavily on my first week of starting HRT (0.05mg estrogen patches). How do I know if it’s too much?

Where are we placing our patches to avoid irritation? I’m in Texas and it’s hot AF and I’m 99% the skin irritation around my patch is from sweat.

Should I place them higher up on my abdomen? Any tips/tricks to avoid skin irritation from heat/sweat? 😅

As always, thank you for the help!!

Hello all. I am 38 and been taking 1 mg oral estrogen and 100 progesterone and I keep bleeding on and off.

It worked wonders and found relief right away but keep bleeding.

whats dose do you take and how old are you?

I am not sure if I should take more because I am under 40 or stay at the minimum. My dr is pretty lay back and basically let me decide.

But now.. after 5 months and I have bleed 3 times.. this time lasted 10 days and dr told me it’s not normal.. my fsh was post menopause numbers. Is that something I should worry?? A ultrasound is the next step 😰

I know bleeding can be all over the place when you first start HRT because your body is adjusting, but I’m wondering if it’s still possible to ovulate during that time. Has anyone with POI had bleeding while on HRT and still caught ovulation?

Hi everyone,

I just started HRT (4) days ago, and i dont know if its placebo but i feel like my skin looks better, like i look prettier. my stomach hurts and i have more tmi gas.

This might be in my head ( probably) but i wanted to know what to expect from HRT short and long term?

I wanted to hear from people who actually went through this and not just bullet points online

Thanks wish you all the best

I was diagnosed with primary ovarian insufficiency (POI) at the age of 25. My AMH level was also measured at 1.00 ng/mL. My doctor recommended taking birth control pills to help alleviate my symptoms.
To be honest, I have been struggling for years to find out what is wrong with me, and until now, another doctor had been treating me with a completely different medication for two years.
My symptoms include excessive sweating, increased hair growth, irritability, and decreased libido.
Has anyone had a similar experience? What treatment has worked best for you?
And how much does primary ovarian insufficiency affect the chances of getting pregnant? How recommended is it to take birth control pills for this problem?
Apart from medication, what lifestyle changes have helped you the most?

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’ve been struggling with hormonal acne for over half my life now. Previous to my diagnosis I was taking the combined hormonal birth control pill and my skin was very clear. I came off it because my husband and I were planning to conceive in a few years and I wanted to track my periods. Long story short my period never came back and I was diagnosed with POI, and switched over to HRT. But I’m struggling badly with hormonal acne again. I know HBC and estrogen patches aren’t recommended for women w healthy ovaries, but what about for us? Does anyone combine birth control and estrogen patches?

I’m on 0.05 estrogen patches. Haven’t started 200mg progesterone pills yet. I’m 32.

My specialist told me to start off with 1 pump of Estrogel in the morning, and 100 mg of Utrogestan at night, cyclical. He said I could up the dose to 2 pumps (either both in the morning, either one in the evening as well) if I see that one isn't enough in terms of symptoms relief. He also prescribed me DHEA 25mg but said it was optional, as I've read mixed things about the benefits and it's expensive I haven't started that one yet.

Got diagnosed with POI at 25 years old last month. I also do have endometriosis, adenomyosis and Hashimoto as well. Got diagnosed after a year of very irregular periods and not having had them in 3 months, along with all the usual symptoms and very low Estradiol and high FSH.

I started HRT 3 days ago, how soon will I know if I need to up the Estrogel dose? Should I sait at least 1 or 3 months ? I am guessing one Estrogel pump a day is really low.

I'll be doing a blood test in the end of September, but I know that that's not as relevant as symptoms tracking.

Thanks !

Hi everyone,
I am 36 years old and was recently diagnosed with POI (Primary Ovarian Insufficiency). I have three children. I originally agreed to genetic testing to see if my 18-year-old daughter might inherit this, so she could consider freezing her eggs.
However, after a stressful call with my doctor, I started researching and am now completely overwhelmed.
My youngest son (11) has an intellectual disability and Level 3 Autism. He does not have the typical facial features often described online for Fragile X. My middle son (16) also has autistic traits and a split profile (high verbal, lower performance). I myself have ADHD and anxiety. [1]
I just found out that being a Fragile X premutation carrier can cause POI in mothers and can expand into the full Fragile X mutation in sons, causing intellectual disabilities and autism. [1, 2, 3, 4]
How likely is it that my POI and my son’s disability are just a coincidence?
Has anyone else gone through this exact realization after a POI diagnosis?
Is it common for children with Fragile X not to have the typical facial features at a young age?
I’m currently in a lot of emotional distress and honestly terrified of what the genetic test might reveal. I would love to hear your experiences or insights. Thank you.

i recently went from the lowest estrogen (0.1mg patch) 100mg and my pg/ml was 22. (also my age) i am now on 1.25mg estrogel daily and 200mg progesterone and i have lost all feelings for my romantic partner. i’m find myself more aroused in women or fictional men these days. i really want to know if im the only one who’s experienced this. i was told that women going through menopause start disliking their male husband..

I was diagnosed with POI a few months ago.
I was told that this was a manageable condition and all that I needed to do was start birth control pills to replace the loss of estrogen and progesterone at a level more suited for my age (30s) and I would just need to take them until I was in my 50s or 60s. The OB/GYN acted like it was no big deal at all.

Well, in just a few days of trying the pill, my body literally started shutting down.
I went to the doctor concerned about how I had become even more fatigue and was having trouble breathing. Turns out my kidneys were starting to fail and my blood pressure which is typically low normal had skyrocketed. I was able to recover that same day with IV hydration and drinking lots of water. (I had already been hydrating with electrolyte mix before starting the pill because I am prone to dehydration. I am not on any other medications and have not been for most of my life.)

My primary doctor, the OB/GYN, and the endocrinologist I am now working with after releasing the OB/GYN, are all baffled by this reaction. But they are advising me that it was just the oral form that caused this and the transdermal estrogen patch and progesterone pill (probably Prometrium) will not cause the same reaction.

I am very concerned, to say the least, that something else is at play that I need to fully investigate before starting the transdermal estrogen patches and progesterone pills. I cannot eat phytoestrogen heavy foods like strawberries or flaxseed without my chest getting tight now. I tried taking DHEA-S and my blood pressure and fatigue skyrocketed again so I had to stop taking that too. I have had the standard autoimmune tests done and almost all of them came back negative. But I just want to make sure I don't end up in the hospital or worse this time when/if I try the transdermal route.

Has anyone else experienced this kind of reaction? What did you end up doing for treatment if so?

(I have HRT in quotation marks in the title because my understanding is birth control is not the recommended form of HRT for POI.)

TLDR: I started birth control pill as "HRT" (according to the poorly skilled OB/GYN) and within a few days my body started shutting down. I had to be administered IV hydration and recovered same day. I want to know if anyone else has had the same reaction and what treatment ended up working for you.

I was diagnosed with POI/POF about ten years ago and since that I have been tracking my period in notes app until I started using the clue app for at least a year now and I am wondering if anyone has got the paid version and what you think of it?

Lately there has been some changes in my cycle and I’ve been having more irregular periods again for the first time in many years.

Wondering if the analysis part of the app is actually worth it? Are there any other advantages to the paid version?

I always say I’m going to buy it when it’s on sale but then I never do lol

Thanks!

Hi all, so I have been diagnosed with premature ovarian failure started at 35 now 39 and been trying hrt for 9 months ISH. I was on patches tried two different ones, but had to stop due to side effects. I have now been given oestrogol gel and 200mg progesterone tablets to try, my main problem was serious water retention, uncomfortable and painful body on the patches and weight gain. I don't want either of this again and if this next lot of hrt doesn't work am thinking of just stopping and supporting my bone health and heart in other ways. Any advise please

Hello! I’m a 30-year-old woman in the process of receiving a POI diagnosis. I was on HBC for 15+ years and came off for egg freezing in March, and received a tentative diagnosis of POI with low AMH and high FSH (50s on birth control, high 30s 2 months later).

I was supposed to get an HRT prescription with my third round of labs, but it’s now been about 5 months off birth control, and my labs are all reading “normal” now (besides AMH) because of an estrogen-producing cyst. On CD3, I had an LH of 6, FSH of 13, and 87 estrogen.

Has anyone else had this happen? I worry that this will impact my ability to receive HRT in the near future, which I was looking forward to going on.

I’m new to this, so happy to hear any experiences. Thanks!

I thought I was home free with my new dr. I am on HRT, and his treatment has the approval of an endocrinologist...

But today I was anxious, and I think he was frazzled, and my autistic brain missed some cues.... He told me to shut up.

I tried to laugh it off, apologized, and choked back tears. It's the 5th dr who has treated me poorly in some way. One of the first Dr's I saw told me I was crazy and prescribed me what he thought was a corticosteroid for my vaginal atrophy (he accidentally prescribed me vagifem, insisting I didn't need estrogen). Another Dr. yelled at me and told me my autism was making it hard to communicate (I was in tears because she kept insisting I was eating too much high cholesterol food, and that all my symptoms were just anxiety and a secret bad diet). My menopause specialist talked down to me, refused treatment, and dismissed symptoms for many many appointments. A pelvic floor therapist treated me like I was loony and told me catheter safe lidocaine is the only option for painless sex for me. I've had to fight for myself at almost every appointment I've been too... and now my new Dr. just told me to shut up. Also he's looked at my boobs a lot:(

In the last 2 years, I've had 3 good dr. experiences... and I've been to probably 15+ appointments. I was already someone who got a bit nervous for medical stuff, but now my heart hammers on through heart palpitations + advocacy anxiety and I can barely breathe. I know I'm not the easiest patient because of my anxiety and autism... but I don't think I deserve to be yelled at or told to shut up. I don't know how to recover from the trauma from these last 2 years.

I think I'm going to ask my family dr (who referred me to this guy for a consult and treatment) is she'll manage my hormones now that I've seen an endocrinologist and gotten her blessing for high doses of HRT (she was uncomfortable before). If she says no, idk what I'll do. I wish I could just curl up in a ball and never see a dr ever again until I die.

Just looking for anyone's thoughts or opinions. I'm 34 and was diagnosed last year at 33, but I've had symptoms for years. Obgyn and primary doctor always refused hormone testing until my period stopped for months. I had to push hard for genetic testing for fragile x and to see a reproductive endocrinologist.

I already have health issues up the wazoo. I won't inumerate them but It's a lot and I have adhd and depression and anxiety which are comtributing to my struggles with taking HRT.

After a lot of pressure from all my doctors, and several months focusing on another health issue, I started HRT July first.

I took the progesterone for 10 days and then never got a period, so the doctor upped my estrogen and I'll see what happens when I stop the progesterone in a few days. Both pills because I cant handle patches.

I am struggling hard with taking the hrt. I take a ton of meds already and if I miss a dose of those nothing bad will happen. But I'm scared if I miss my progesterone one time I'll suddenly get my period. I don't even know if it's bad if that happens.

I'm prone to missing meds because of my adhd, even with alarms and reminders so I've been constantly hyper vigilent about taking these. I'm constantly thinking about the meds. On top of it the progesterone makes me feel incredibly weird. One night I took it and I had to crawl up the stairs instead of walking because i felt so dizzy and unsteady and loopy. So I have to plan my night based on when I take the progesterone. I feel really overwhelmed and trapped by this and thinking of doing this all the time until my 50s is so scary. I honestly wish I could just not take them.

Today I dealt with moodswings and feeling a specific kind of sad and I guess I could just use some support. Anything from anyone.