r/POFlife

For context, I am currently only on birth control and don’t think that it’s helping/I have bad reactions to it. This current bc that I’m on causes me to sob 4 days straight and even made me have a full blown panic attack. Not only that, but the week leading up to my period I have constant joint pain that won’t go away. I’m also hyper mobile, so it makes everything 10x worse.

Once I start the placebo pill, my emotions go back to normal. However, the pain is still there. Plus, every 9 days leading up to my period, I get what feels to be a vestibular migraine.

Even on the active pills I still feel like total garbage. I have muscle aches, am constantly tired, have 0 energy or patience, get hot flashes, have horrible brain fog, etc.

Is there any possible way this could be solved with actual HRT?

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 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’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 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?

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

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 !

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

Hi everyone-

Wanted to know what your recovery looked like post insertion. I’ve had my IUD for about two weeks and still have severe cramps, lots of bleeding, lots of clots.

My OB wants me to wait until my 6 week checkup to determine if it’s out of place. What was your experience like in the weeks after your procedure?

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.

Hi all. I was diagnosed last fall at 36yo. Initial symptoms were fatigue, brain fog, anxiety and hot flashes, and 4 months no period after stopping BC. First estrogen check was 0, with high FSH/LH. All else normal. No autoimmune. I started HRT at 0.025mg estradiol 2x/week and 100mg continuous micro progesterone. Symptoms alleviated so much and follow up labs showed good improvement. FF 5 months, symptoms crept back up, labs showed another dip in estrogen. I upped to 0.05mg patch. Improved again. This was 4 months ago. All the while, I’ve had regular 22-27 day “cycles”. Now, I’m on day 31 and my symptoms (mainly fatigue, brain fog, and anxiety) have been AWFUL this past week. I’m scheduled for labs and upped to 0.1 patch/200 mg progesterone starting tonight. My exhaustion has been at a new low today and I just want to cry. Is this normal? Is it just because I needed this dose adjustment? Please help.

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

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!

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.

I am a 25-year-old female dealing with lingering right-sided physical symptoms that started over two specific days in May. On May 4th while working, I was feeling very tired and took a few deep yawns; during the last yawn, it felt like something pulled or popped in my throat, leaving a continuous tight, lump-like sensation. This lump sensation was so intense that I was unable to eat solid food for a whole month, relying entirely on liquids. After about a month, I was slowly able to start eating solids again and can eat solid foods now. However, I hyperfixate on my throat so much that I get discouraged while eating, often feeling like my jaw function is about to stop working mid-chew and making me panic that I am going to choke. The very next day after the throat event, May 5th, while sitting in my car, things cascaded into a sudden wave of heaviness, density, and fatigue down the right side of my neck, shoulder, and arm.
Leading up to this, I had been engaging in intense daily strength training before and after work, taking 5 to 10 grams of creatine daily with heavy water intake. My health baseline includes uncontrolled high cholesterol for about five years, along with hypothyroidism that went untreated for five years and a recent diagnosis of Primary Ovarian Insufficiency (POI), both of which I have just recently started treating with levothyroxine and an estradiol patch. I also had a major right-sided dental issue: tooth #4 had an old root canal with an infection and fracture that eventually required a deep cleaning, extraction, and bone graft on July 18th. I noticed that my right-sided facial stiffness flared up severely right before my dental visits and actually improved notably after the tooth was extracted.
The sudden onset on May 5th triggered severe fear that I was experiencing a stroke or TIA. I deal with very bad health anxiety, so I know that my right-sided facial differences feel completely real and authentic to me. However, when it comes to my right leg and arm, I feel a bit iffy because there are days when I can go through my routine, focus on things only lightly, and not really notice anything at all. Because of the constant fear, I find myself compulsively checking and testing the right side of my body throughout the day.
To investigate the throat and neck issues, I saw an ENT who put a camera down my nose and found nothing abnormal. A CT scan of my neck was completely fine, and both my Modified Barium Swallow study and Barium Esophagram came back entirely normal, showing clear swallowing mechanics, no aspiration, and normal esophageal motility. On July 28th, I also had non-contrast 3-Tesla MRI scans of my brain and cervical spine. The 3T Brain MRI was unremarkable, showing normal brain tissue with no evidence of stroke, old ischemic scars, or demyelination. My Cervical Spine MRI revealed a straightening of the normal cervical curvature with no subluxation, indicating severe muscle spasms pulling my neck straight. The spinal cord was normal, but the scan identified disc bulges at C4-C5 and C5-C6 without central spinal canal or foraminal stenosis, meaning the discs are bulged but not causing severe, dangerous nerve root compression.
I am preparing for an upcoming neurology appointment to review these results. Since my brain MRI confirmed no structural damage, I am planning to ask my doctor about objective electrical and nerve tests—such as a Facial Nerve Conduction Study, Blink Reflex test, or EMG—to directly measure nerve signaling on my right side. Has anyone here dealt with something similar, known anyone who has gone through this, or can offer any advice on managing these physical symptoms alongside severe health anxiety?

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.

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?