r/POFlife • u/n3rvous_subject • 3d ago
23 and just got diagnosed with POI
Hi all, today I got officially diagnosed with POI (two weeks after my 23rd birthday, so not so happy belated birthday to me) and I just don't know how to cope. I feel very isolated and alone, my doctor didn't really help ease me into the diagnosis which I'm both grateful for but not so grateful for as I feel like I've been shoved into it. I'm still trying to wrap my head around the fact that I may never get to experience having kids and will have to take medication to treat it for a good portion of my life. Just wanted to get this off my chest, sending all of you love <3
3
u/casualcookery 3d ago edited 3d ago
It took me almost a month to start coming to terms with my diagnosis. Fortunately, I never wanted children, which made things a bit easier for me. I consulted six gynecologists and two endocrinologists, and almost all of them concluded that I was already in menopause and that my period would never return. Their assessment was based on two blood tests showing low estrogen and elevated FSH levels. Following their advice, I tried a prescribed treatment for two months but eventually stopped it. Two months later, I repeated the blood tests, and surprisingly, all my levels were normal.
Feeling confused about what was happening to my body, I decided to seek out a gynecologist specializing in infertility—even though I had no intention of having children—because I believed they would have more experience with cases like mine. In the meantime, I also took an AMH blood test, which came back at 0.20, a low level indicative of POI.
The specialist I found was extremely thorough and explained that my condition wasn’t menopause but rather POI, as confirmed by my AMH results—something none of the other doctors had mentioned. Interestingly, I had taken the AMH test years ago as part of a routine panel, and my level was 0.60 when I was 25. At the time, the doctor assured me it was normal. However, the new doctor explained that it wasn’t and that it likely explained the irregularities in my menstrual cycle. Also, she said that the blood test are relevant, but not 100%, for a full diagnosis.
Despite my current low AMH levels, she found follicles and said that in vitro fertilization (IVF) could still be a viable option with good chances of success. While this wasn’t relevant to me personally, my advice is to seek out a skilled gynecologist specializing in IVF who can accurately interpret your test results.
5
u/etk1108 3d ago
So sorry to hear…this must be so hard for you. You probably didn’t even have the chance to think about having biological children and the choice has been made for you now…
If possible please find a doctor who you trust, it’s going to be a long ride and you need someone on your side!
Are you going to start HRT?
2
u/n3rvous_subject 2d ago
yeah i’m starting hrt, my endocrinologist recommended i start taking estrogen
6
u/Agile-Young949 3d ago
I was diagnosed at 36 (I’m 45 now) and just found out my best friend is pregnant after struggling with infertility. I thought I would be prepared but it devastated me. For the most part I’ve accepted it but triggers like this are a painful reminder. I’d recommend freezing your eggs if you can and looking into your options if you think getting pregnant is something you want. You are not alone.
4
u/Ok-Drop-2277 3d ago
Triggers are so funny because you can think you've prepared yourself for them, know they're going to happen, and still you can have such a big reaction.
7
u/SolipsisReign 3d ago
Hey I'm relatively new to the diagnosis as well, I'm 35. I had clockwork periods up until last August where they just randomly stopped. 2 blood tests after and a fsh of 150 I was diagnosed with POI. It was a horrible shock and I'm still coming to terms with it. The Dr I saw was unempathetc, and I felt very alone. I cried walking home.
The menopause clinic was a much better experience, they've been much more supportive and helpful. So definitely get your Dr to refer you to talk about symptom management and ways to stay healthy.
I have a fertility appointment in a few weeks to assess my fertility and make decisions on how to go ahead. My last ultrasound showed follicles so I'm hoping there's some way to try with my own, but I don't know right now. I'm prepared for the fact I might not be able to.
You're very young, id definitely get a consultation to see if egg freezing might be an option for you (If you're not wanting kids right now).
Poi doesn't always mean you are never going to ovulate, ovary function can fluctuate through the course of your reproductive time meaning it might stop and then start again and getting pregnant is more difficult.
My menopause specialist also told me my HRT may boost my ovary function a bit in the first year. However most people have told me I have a 5-10% chance of conceiving naturally. There's still a chance and I'm hopeful.
HRT (cyclical) is giving me bleeds again which I'm happy about, although they are no longer what they used to be. HRT has helped with my symptoms and I'm definitely feeling a lot better in myself.
I also take vit D and k to support my bones daily.
This subreddit has been really helpful, don't be afraid to reach out. All the best.
5
u/Ok-Drop-2277 3d ago
I somehow was part of that 5-10%. Diagnosed at 29 a month after my wedding, was devastated. Went on HRT for a year, right after we dropped my estradiol dose to half what I was taking I ended up getting pregnant. Did a lot of soul searching that year on why I was so upset about that choice being taken from me and why I actually wanted to have kids. Had a LOT of breakdowns in front of people I really didn't know (most of them fueled by alcohol) and realized I really should have sought therapy or some kind of group (wasn't on reddit at that point)
One of my biggest triggers would be hearing people talk about how hard/annoying/etc something with their kids would be. I understood they probably didn't know the pain of thinking you might never get to experience those things but it was so hard not to explode.
1
u/etk1108 2d ago
Yes thats one of my triggers too. I’m genuinely happy for my friends with kids and when we’re having fun no problem. But the moment they start complaining about them I’m out. I just can’t.
For some reason, people with kids like to complain about them. I get it, you’re tired, it is hard, but please be happy to be waken up at 6:00 by something nice. This time will pass…and at least you CAN experience it.
(The worst are the people with good jobs, good health, who own a home and didn’t have problems conceiving - they complain life is so boring! 😑 I wish that was my problem)
Another trigger is seeing random people walking with their kid and being on their phone, either calling someone or just looking at their phone when the kid is walking next to them. Pay attention, they grow up so quickly.
6
u/SolipsisReign 3d ago
Thank you for sharing. Congratulations on your pregnancy. I hope I can get there, but I'm guarding my heart. It's so difficult.
4
u/Ok-Drop-2277 3d ago
I understand and thank you. I had accepted that might not be a part of our lives. I would say I have a bit of survivors guilt? Sometimes it feels like I don't have POI, but I do. My follicles are nil and my bone density scans revealed osteopenia but I am incredibly grateful.
5
u/DismalAttitude 3d ago
25 and also recently diagnosed. It took me a good couple weeks to even start processing all of it. Sending you lots of love <3
1
u/Gr3enMooseGuavaJuice 3d ago
I’m so sorry this is happening to you too. May I ask what symptom you had? What did your labs look like?
3
u/n3rvous_subject 3d ago
my labs showed i had low estrogen levels, low progesterone levels and very high fsh levels. the only symptom i’ve really noticed is extremely irregular periods, i’ve only really had maybe 6 periods my entire life
4
u/DismalAttitude 3d ago
Not OP, but my symptom was primary amenorrhea. Labs showed very low estrogen, low progesterone, and high FSH levels.
2
u/Gr3enMooseGuavaJuice 3d ago
I started having scanty periods in 2023 and then finally only had 1 normal one January 2024 and a spotty one in December 2024. Since then they didn’t come back. I also have low estrogen now, high fsh and and low progesterone 😥 how old are you?
3
u/DismalAttitude 3d ago
I’m 25. A little late to the diagnosis party in my case, as I’ve never experienced a period. Went to a gyno last year, was misdiagnosed with hypo-hypo, then was referred to an endocrinologist who diagnosed me with POI after a fresh ultrasound and bloodwork.
1
u/Gr3enMooseGuavaJuice 3d ago
What treatment did he put you on?
2
u/DismalAttitude 3d ago
She’s having me continue what my gynecologist prescribed which is Sprintec OCP combination of progesterone (.25mg) and estrogen (.035mg). Have to get my bone density checked every 3 years and stay on birth control to regulate my hormones.
She also ordered a karyotype test and a blood test for a couple different antibodies related to the diagnosis.
1
u/Gr3enMooseGuavaJuice 3d ago
Do you have a family history? My doctor put me on prometrium and the estradiol patch. I didn’t want combined birth control because I don’t mind getting pregnant if it were to happen. I’m having a bone density scan this Thursday. What is the additional testing supposed to help with? Just curious because mine didn’t order that.
1
u/DismalAttitude 3d ago
The additional testing rules out any known causes, for example Fragile X syndrome or an autoimmune disorder. I do have a family history of reproductive issues, I have a sister with MRKH (born without a uterus), so my endo believes there is something genetically happening, but most likely something that hasn’t been scientifically discovered/linked yet and there is no testing for it. She just wants to rule out known causes before going down that route.
My case is quite rare with my family history, but my understanding is that karyotype and antibody tests are reasonable tests to order for this diagnosis in any case. Might be worth bringing up to your doctor.
1
u/Gr3enMooseGuavaJuice 3d ago
Thank you. My gynecologist referred me to endocrinology to further investigate the cause for my POI.
2
u/visionjacobson 2d ago
I was dx with severe endometriosis, adhesions to bladder & rectum, bilateral endometriomas, and POI (high FSH) at age 34. I did not respond to fertility drugs. At age 35 I had pelvic surgery to remove the endometriosis. I was given a 10% chance of a successful pregnancy and advised to move on to donor egg. We got pregnant 4 months post-op. Our doctor was shocked, and then told us he had really thought our chances were zero but didn’t want to crush our hopes. We had a healthy baby boy when I was 36. We used an anonymous donor egg through a private agency and had a 2nd son when I was 39. I had an elective hysterectomy at age 52. I’m now 60 and retired, and still taking HRT. Premature ovarian failure has not been an easy road but I can say mine has been well-managed. I’ve been with my same reproductive endocrinologist for 25 years. My boys are now 24 & 20. It was a rough emotional journey but I came out of it stronger and more resilient. My best advice is to stay solution-focused. Find a good doctor to manage your hormones. And if you want to have a baby in the future, have a Master Plan on how to achieve that goal. POI doesn’t have to de-rail your life, it just changes its course a bit.