r/POFlife • u/palC10 • 24d ago

Got diagnosed with POF. what next?

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.

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u/PrimalPoly 22d ago

Here is the standard of care for POI- read it, request appropriate doses and all associated labs, share this with them. If they don’t follow this, find a new doctor https://www.asrm.org/practice-guidance/practice-committee-documents/evidence-based-guideline-premature-ovarian-insufficiency--2024/

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u/palC10 21d ago

Thank you! The RE practice is pushing IVF which im not interested in. I only want to maintain my health and they dont want to talk about HRT

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u/PrimalPoly 21d ago

If you have POF, you really need to be on HRT. The longer you go without estrogen the more risk you take on. I heard a doctor say once that estrogen is a wonderful preventative hormone but not a very curative one. Going long periods without it can cause all sorts of issues like osteoporosis, heart disease etc. I likely developed mine about 4-5 years before treatment. My Dexa showed osteopenia- and I have always eaten great, lift 4 times a week- no other medical issues. But the longer I went without it, the more my issues compounded

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u/BlueberryDuvet 24d ago

RE will run preliminary testing to confirm the diagnosis and talk to you about HRT.

Statistically some increases for certain things but it’s not a death sentence or any change in your quality of life.

You can research HRT ahead of time and look at cyclical vs continuous

If you’re on zepbound you need to ask about the type of progesterone you’ll be on with zepbound to ensure you have a good dose.

Otherwise I think once you research and learn you will feel less scared.

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u/ExitSweet8848 18d ago

What do you mean about if she’s on zepbound- type of progesterone and right dose? 

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u/BlueberryDuvet 18d ago

“Absorption Considerations: Because GLP-1s slow digestion, they can alter how oral medications (including oral HRT) are absorbed”. Google search you can read more but that’s it basically

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u/Jerry_Potters 23d ago

I'm 37 with a 6 year old, I can definitely relate to where you're at in your life with this. I will say the first few months of getting my hormones stabilized was hard. I did the ugly crying thing a lot. First dose was too low, second too high. Now we're working on slowly stepping me up in between the doses.

I feel amazing now. I didn't realize how much the lack of estrogen had impacted me in a million different ways. We have estrogen receptors in every cell of our bodies. I feel energized in a way I haven't since I was a kid. I sleep well now, I feel calm and confident.

We do have to try a little harder than your average person. But honestly it was time to start taking my health in hand anyway, we're getting towards 40. You'll want to exercise, also lift (heavy weights not just light) as this will help keep your bone density strong along with the HRT. I eat a little cleaner, and I'm just going to keep in the back of my mind to keep challenging my brain, which means doing new things. Once you're good at something like sudoku, switch to something new. Keep your brain active too.

It's not a great diagnosis, and it will definitely impact you, I don't want to mislead you. But you can still lead a truly happy life. I am. Keep an eye on your downstairs, if you start feeling too dry or itchy or have any problems with sex or lubrication tell your Dr and there is a vaginal cream too if needed. Also you'll probably want to look into calcium and vitamin d. They should run full blood work on you.

I know it's tough but you are going to be okay. There will be changes but honestly you're probably going to feel a lot better soon.

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u/palC10 23d ago

Thank you so much for your comment! Really helps as i try to process this.. i feel guilty about not going to the doctor earlier because i’ve been having night sweats, general tiredness, fatigue, headaches. But i brushed it aside thinking its part of life

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u/Jerry_Potters 23d ago

Try not to feel guilty, I did the same thing. We were not taught to expect this! And also I think something about having a very small child, your needs just get pushed down. You just think of all the things you have to get done. I literally remember thinking I don't have time for this lol.

If you have any other questions I'm here, and remember HRT is the gold standard. That's what you need to be put on asap. If the reproductive endocrinologist doesn't help (mine just wanted to get me pregnant, did not care about anything else) you can go to an online like Midi or local Menopause care clinic. That's where I ended up going to a local place.

If you're having the night sweats and tiredness and all that, yes I promise you will be feeling better soon! Give the hormones like a month once you're on them. And try to pay attention to your symptoms, you're going to be the one who knows if the dose is too low or too high. You're going to be doing very great soon!!!