u/illcallulaterr

Hi everyone. I'm 24 (turning 25 in a few months), and I was diagnosed with primary ovarian insufficiency (POI) three years ago. In my case, it was something I was born with because I have mosaic Turner syndrome. (Most women have two X chromosomes (XX), but I have a mosaic chromosome pattern. Some of my cells have one X chromosome, some have the usual two X chromosomes, and some have three X chromosomes.)

One thing I've been struggling with is my libido.
A few months before I was diagnosed, I noticed that I started losing my sense of sexual desire and intimacy. Before that, I would get aroused quite easily. Then, gradually, it almost disappeared. This started before I even knew I had POl, so I don't think the diagnosis itself caused it.
I've been on HRT ever since. Right now | take Femoston 2/10 (2 mg estradiol every day, with 10 mg dydrogesterone during the second halt of the cycle).
Since my diagnosis, l've been single. I was also single before then, but back then I still had a normal libido. Now it's very difficult for me to feel aroused.

Sometimes I wonder if I'm just overthinking this. I've read that people can experience different types of sexual desire. Some people have more spontaneous desire that seems to appear out of nowhere, while others experience desire only after emotional connection, affection, or other triggers.
Maybe I've simply shifted from the first type to the second as I've gotten older, rather than losing my libido completely. I'm not sure if that's what's happening, which is why I'm asking if anyone else with POI or Turner syndrome has experienced somethina similar.

Occasionally, I'll watch a TV show with a couple who have amazing chemistry, and I'll think, "Wow." Those feelings are still there somewhere, but they happen very rarely compared with how things used to be.
Over the past couple of months, after improving my diet and generally taking better care of myself, l've noticed a slight improvement, which gives me some hope. But I'm still worried that this might be permanent.

I know this is a very personal topic, and I'm sorry if it's TMI. I'm posting because I'm genuinely wondering if anyone else with POl or Turner syndrome has gone through something similar.

Did your libido ever come back? Did adjusting your HRT, changing your lifestyle, or anything else make a difference? Or is this something you've learned to live with?

I'd really appreciate hearing about your experiences.
Thank you.

Hi everyone. I’m 24 (turning 25 in a few months), and I was diagnosed with primary ovarian insufficiency (POI) three years ago. In my case, it was something I was born with because I have mosaic Turner syndrome. (Most women have two X chromosomes (XX), but I have a mosaic chromosome pattern. Some of my cells have one X chromosome, some have the usual two X chromosomes, and some have three X chromosomes.)

One thing I’ve been struggling with is my libido.
A few months before I was diagnosed, I noticed that I started losing my sense of sexual desire and intimacy. Before that, I would get aroused quite easily. Then, gradually, it almost disappeared. This started before I even knew I had POI, so I don’t think the diagnosis itself caused it.
I’ve been on HRT ever since. Right now I take Femoston 2/10 (2 mg estradiol every day, with 10 mg dydrogesterone during the second half of the cycle).
Since my diagnosis, I’ve been single. I was also single before then, but back then I still had a normal libido. Now it’s very difficult for me to feel aroused.

Sometimes I wonder if I’m just overthinking this. I’ve read that people can experience different types of sexual desire. Some people have more spontaneous desire that seems to appear out of nowhere, while others experience desire only after emotional connection, affection, or other triggers.
Maybe I’ve simply shifted from the first type to the second as I’ve gotten older, rather than losing my libido completely. I’m not sure if that’s what’s happening, which is why I’m asking if anyone else with POI or Turner syndrome has experienced something similar.

Occasionally, I’ll watch a TV show with a couple who have amazing chemistry, and I’ll think, “Wow.” Those feelings are still there somewhere, but they happen very rarely compared with how things used to be.
Over the past couple of months, after improving my diet and generally taking better care of myself, I’ve noticed a slight improvement, which gives me some hope. But I’m still worried that this might be permanent.

I know this is a very personal topic, and I’m sorry if it’s TMI. I’m posting because I’m genuinely wondering if anyone else with POI or Turner syndrome has gone through something similar.

Did your libido ever come back? Did adjusting your HRT, changing your lifestyle, or anything else make a difference? Or is this something you’ve learned to live with?

I’d really appreciate hearing about your experiences. Thank you.

I’ve noticed something that’s been bothering me.

When I go on YouTube, it’s really easy to find creators talking about PCOS and sharing their personal experiences. But when it comes to POF, I can barely find anything. If I search for it, I mostly get very clinical, educational videos, doctors explaining what it is, why it happens, and general advice about diet and lifestyle. And sure, that’s useful, but it’s not the same.

What I’m missing is actual people. Real experiences. Someone living with this condition, talking about how it affects their life day to day.

It almost feels like no one is representing people with POF, and I don’t understand why. I know I’m not alone, Reddit has helped me realize there are others like me, and I’ve learned a lot from here. But outside of Reddit, it feels like we’re invisible.

Maybe this sounds selfish, but I just want to see someone like me out there. Someone I can relate to.

If anyone knows any YouTubers or creators who talk about this or share their experience with it, I’d really appreciate recommendations.

I’ve noticed something that’s been bothering me.

When I go on YouTube, it’s really easy to find creators talking about PCOS and sharing their personal experiences. But when it comes to POI, I can barely find anything. If I search for it, I mostly get very clinical, educational videos, doctors explaining what it is, why it happens, and general advice about diet and lifestyle. And sure, that’s useful, but it’s not the same.

What I’m missing is actual people. Real experiences. Someone living with this condition, talking about how it affects their life day to day.

It almost feels like no one is representing people with POI, and I don’t understand why. I know I’m not alone, Reddit has helped me realize there are others like me, and I’ve learned a lot from here. But outside of Reddit, it feels like we’re invisible.

Maybe this sounds selfish, but I just want to see someone like me out there. Someone I can relate to.

If anyone knows any YouTubers or creators who talk about this or share their experience with it, I’d really appreciate recommendations.

I noticed something odd. When I use a hair clip to pinch the base of my fingers (where they connect to the palm), it feels kind of uncomfortable but also weirdly relaxing at the same time?

It's like a mix of slight pain and relief, and I keep wanting to do it again.

Is there a reason for this or does anyone else do it?

I was sitting in the car today waiting for my mom and just people-watching. There were teenagers and kids talking and laughing with their parents, just normal everyday stuff. But it hit me harder than I expected. I know you can’t judge a whole relationship from a few seconds, but it made me realize I’ve never really had that kind of connection with mine. There weren’t easy or fun conversations. Most of the time they were talking and I was just there listening. That was the dynamic.

It made me so sad I felt like crying. And now that I’m older, I keep thinking I would never treat a child or teenager the way I was treated. It’s hard for me to believe that was their “best.” Thinking about it honestly makes me feel sick. At the same time, they do try more now, but it feels late. Like you can’t really go back and fix something like that once it’s already shaped you. You don’t get a second childhood.

I also feel this weird nostalgia for something I never even had. And I realized I’m not a teenager anymore, that part of life is gone for me, and I didn’t even really get to experience it properly.

I’m just venting, honestly. I just want to know if other people have felt this too. If this is something others go through and how you deal with it.

Because even though those memories weren’t good at all, financially things were unstable, mentally it wasn’t great either, I still felt happy in a way. I think it’s because I didn’t fully understand what was happening back then. Now I’m in a better situation in many ways, but I still feel like I lost something important I can’t really get back.

I was sitting in the car today waiting for my mom and just people-watching. There were teenagers and kids talking and laughing with their parents, just normal everyday stuff. But it hit me harder than I expected. I know you can’t judge a whole relationship from a few seconds, but it made me realize I’ve never really had that kind of connection with mine. There weren’t easy or fun conversations. Most of the time they were talking and I was just there listening. That was the dynamic.

It made me so sad I felt like crying. And now that I’m older, I keep thinking I would never treat a child or teenager the way I was treated. It’s hard for me to believe that was their “best.” Thinking about it honestly makes me feel sick. At the same time, they do try more now, but it feels late. Like you can’t really go back and fix something like that once it’s already shaped you. You don’t get a second childhood.

I also feel this weird nostalgia for something I never even had. And I realized I’m not a teenager anymore, that part of life is gone for me, and I didn’t even really get to experience it properly.

I’m just venting, honestly. I just want to know if other people have felt this too. If this is something others go through and how you deal with it.

Because even though those memories weren’t good at all, financially things were unstable, mentally it wasn’t great either, I still felt happy in a way. I think it’s because I didn’t fully understand what was happening back then. Now I’m in a better situation in many ways, but I still feel like I lost something important I can’t really get back.

Hello,

I’ve been on Femoston 2/10 (estradiol 2 mg + dydrogesterone 10 mg) for over 3 years now, and lately I’ve started wondering if this dose is actually enough for me.

I’m 24 and taking it because of early ovarian failure. I guess I’m realizing I’ve just been taking the same prescription without really questioning it.

I know it’s different for everyone, but I’d really like to hear what’s considered “normal” or typical for someone in a similar situation.

Has anyone here been on Femoston 2/10 long-term?
Did it feel like enough for you?
Did your doctor ever change your dose?
Are you on Femoston or using something else (like different pills, patches, gels)?
And overall, how did you feel on it, energy, mood, cycle, all of that?

Hello,

I’ve been on Femoston 2/10 (estradiol 2 mg + dydrogesterone 10 mg) for over 3 years now, and lately I’ve started wondering if this dose is actually enough for me.

I’m 24 and taking it because of early ovarian failure. I guess I’m realizing I’ve just been taking the same prescription without really questioning it.

I know it’s different for everyone, but I’d really like to hear what’s considered “normal” or typical for someone in a similar situation.

Has anyone here been on Femoston 2/10 long-term?
Did it feel like enough for you?
Did your doctor ever change your dose?
Are you on Femoston or using something else (like different pills, patches, gels)?
And overall, how did you feel on it, energy, mood, cycle, all of that?