Story Session: Jen's Story of Premature Ovarian Insufficiency (POI)

Up until the last decade, the lack of information about menopause and how to prepare for it has been overwhelming, and there is still so much more work to do in filling that gap. When we don’t have safe places to share our experiences, we are often forced to make assumptions that something is wrong with us, leading to unnecessary shame about our bodies. But it doesn’t have to be this way! 

In this episode, I am joined by Midlife Feast Community member, Jen who started experiencing menopause at the age of 31. After a long wait and multiple rounds of tests, she was finally diagnosed with Premature Ovarian Insufficiency, also known as POI. She shares how she knew it was time to ask more questions, and how lonely it was not having peers she could identify with. You’ll also discover why meditation was a transformative tool in her self-care journey.

A supportive, honest community is a huge key to being able to navigate menopause and midlife with confidence and grace. Even if you don’t relate to Jen’s experience, I encourage you to listen and learn with us in the event that a friend or family member is showing signs of POI. In taking time to listen, we can normalize these discussions and offer encouragement that every woman deserves a place to belong and the chance to thrive in this season! 

In this episode you’ll learn: 

• What menopausal symptoms Jen struggled with most in her early thirties
• What types of tests were involved in getting to the root of Jen’s struggle
• Why Jen felt so supported in the Midlife Feast community
• Why using HRT is a non-negotiable in Jen’s circumstance
• How Jen is using meditation to support and connect with her body

To get in touch with Jen, check out her website @chasingwildflowersayurveda.com and tune into her podcast PeaceLove Meditations. 

TRANSCRIPT 

Jenn Huber  00:02

Hi, and welcome to the midlife feast the podcast for women who are hungry for more in this season of life. I'm your host, Dr. Jenn Selena Huber. Come to my table, listen and learn from me. Trusted guests, experts in women's health and interviews with women just like you. Each episode brings to the table juicy conversations designed to help you feast on midlife. All right, welcome, Jen to the midlife feast.

Jen  00:30

Thank you. It's nice to be here.

Jenn Huber  00:33

So this episode, I think, is really going to be a treat for many people. And if you're listening to this, and you hear us talk about, you know how what we're going to talk about you think, Oh, wait, that doesn't apply to me. Please listen, because I can guarantee that you will know someone at some point in your life, who will be going through what Jen has gone through and just expanding our understanding of what menopause is, and outside of the scope of age, I think will be helpful. So Jen, why don't you just tell us a little bit about you. So you're in menopause, but we're not in the same kind of menopause. So you want to tell us about that?

Jen  01:14

Yeah, so I have primary ovarian insufficiency, which is essentially early menopause. And I was diagnosed with this about at age 31. So there were definitely signs before that, that I was probably in the perimenopause stage. But I

Jen  01:39

you know, I was too young. And I wasn't thinking about that. And I didn't really recognize the signs.

Jenn Huber  01:45

So what were some of the signs and symptoms that you had,

Jen  01:49

while for several years before I was diagnosed, I would have a really long time between periods. And I actually would go to the doctor, like once or twice a year, and she would give me progesterone, like a 10 day pack, which would trigger a period. And I didn't really think much of that for a long time. So for a couple of years, I probably just use the progesterone to trigger the period. Some other signs, once it was getting closer to the date, diagnosis, I was having a lot of hot flashes at night. My hair, it got really thin. I don't know if that's one of the symptoms, but that's something that I dealt with. Yeah, yeah, so definitely, that was the big one and hot flashes.

Jenn Huber  02:43

And that's, I mean, fairly typical, and not unexpected if you're in your 40s or 50s. But certainly in your late 20s, that would be quite a surprise. So just to kind of orient our listeners, the average age of menopause. So the age at which you stop having periods is 5152 in North America, probably around the world. But most of most of the time, we st references, you know, American averages. And if you go into menopause between the age of 40 and 45, that's what's considered early so I'm in that that bracket. And then anything before 40 is considered premature. And often it comes with a diagnosis of poi or premature ovarian insufficiency, which essentially means that your ovaries stopped working long in advance of when we would expect them to always unexpected, I would say, always unwelcome and often comes with more questions than answers. So what what kind of led up to the oh, wait a minute, this might not quite be just, you know, changes to my period, this might be something more.

Jen  03:56

Well, I honestly wasn't very aware. So I hadn't had my period and probably eight months. So I went to the doctor. And once I moved to Colorado, I really ended up with a really great OBGYN. And she was the one who said, Hey, wait, let's see what's going on here and ordered me some blood tests. And at first she just thought that I had PCOS. But then the blood tests came back and it revealed that I probably had poi. So I had to get more blood tests to see how many like eggs are actually left. And that's whenever we were able to get the diagnosis for it.

Jenn Huber  04:41

I imagine that that was very, that was very difficult. I'm sure.

Jen  04:46

It was really challenging. I have always been somebody who wasn't planning on having kids but like I always say it's a different story when you're told you can't verse says, Who knows if it happens? It happens.

Jenn Huber  05:04

Yeah, absolutely. Because I mean, a lot of people at 2829 30 don't know for sure if they want kids or not, but they'd still like to know they have the choice. Exactly. That choice is taken away so hard. Was there any family history or anyone else in your family?

Jen  05:24

Well, I know that my aunt's had difficulty conceiving, but she was able to get pregnant and I have a cousin. Other than that, I'm not really aware of anyone. And that's kind of the the question around this diagnosis as well, with all the questions is, we most of the time really don't know what caused it or where it came from.

Jenn Huber  05:53

Yeah, and of course, the big question mark, is that, you know, because all of your eggs were formed while your grandmother was pregnant with your mother. Right? So you know, this is it. And that's why when we talk about, like environmental influences on fertility and reproductive health, it is really hard to pinpoint, like, one thing one time, unless there's like, a really major traumatic event, like a famine, or, you know, something like that. But yeah, it's, um, there are definitely more questions and answers when it comes to poi. One of the things that, I think, and I certainly want your experience on this as well, but I think one of the more challenging pieces outside of of course, having hot flashes at 30, is that there's probably no one else that you know, in your family or friends circle that, you know, like your peer group, as it were age related peers who have any idea what you're going through.

Jen  06:51

Yeah, they really don't just when I try to explain it, I, I still don't think they quite get it. Yeah, and that's what's been really hard as well. And it's been hard for me to seek out different groups or sources that have more information on this just because it is so rare. And this is one of the main major reasons that I joined the midlife feast group, just to have more information, and to have just the support because people Yeah, people my age. Yeah, they don't really understand in my experience,

Jenn Huber  07:31

and I'm so glad that you found us so glad. I mean, you know, we have a huge range in our membership between, I would probably say you're the youngest, I'll give you that round to where, you know, we have people in all stages of of menopause, as it were from, you know, perimenopause to post menopause. But every, every experience is unique. So it doesn't matter how old you are, you could meet 100 other people who have the same diagnosis of poi, and everyone's experience is going to be a little different. But just knowing that you're not alone, is I think it doesn't matter what we're talking about, you know, have Hormonal Health or otherwise, but just knowing that you're not alone, it's not something that you have to sort out by yourself, that there are other people who have walked this road, who can kind of give you a pat on the back is is really important. So where are you now? So how long ago was this diagnosis?

Jen  08:24

Oh, that was about five years ago. So where I am now is that I know, there's kind of a big debate in menopause community about using hormone replacement therapy. And me being so young having this, my doctors essentially say that I have to, I have to take estrogen. Yeah, and that's going to just protect my bones and everything while I'm young so that I can grow older, but

Jenn Huber  08:59

and there really, it's so for people who go into menopause before 40 There is no debate. You know, I always tell people that there is no debate that you benefit from you benefit in the short term in terms of managing your symptoms and your quality of life. But you really benefit in the long term by protecting your bones, your heart, your brain. And, you know, because essentially, this wasn't supposed to happen, you know, menopause is natural, but it doesn't naturally happen that 28 or 29. And so when that happens, it means that something went wrong, we can't go back and fix it, what's done is done. And because we have, you know, access to this hormone replacement, we can kind of fill the gaps for you until you get to an age when you would normally have gone through menopause. And, you know, I think that that's a great thing because you know, we want you to live well into you know, your second season. feeling strong with strong healthy bones and a heart and all that kind of stuff and So that was five years ago. What? What do you wish you had known about menopause? Like, what do you wish you had learned? Let's say like in high school health class?

Jen  10:11

Well, what I think now is that if you practice self care, and you take care of yourself and you exercise, then I, I think that menopausal symptoms are not as intense, perhaps. So I wish that that was kind of more of a focus, you know, I went to college and did the party life and just really was, wasn't really mindful of how I was taking care of myself until it was probably too late. And I think that's probably why I had such intense hot flashes, and with the hair thinning and all of that, and I feel like if I would have taken better care of myself, then well, maybe that still would have happened. But I might have also been able to catch what was happening to me before the doctor did.

Jenn Huber  11:17

It's always so it's so tempting to look back and think, Oh, if only I hadn't or if I had done this. And when, especially with I think symptoms of menopause, or when it happens unexpectedly, I imagine that it's even easier to go back and say like, Oh, I wish I had done this. Or if I only do that, what we know about the experience of the symptoms, especially around sleep, and mood and things like that is that self care practices that include movement can certainly help in the moment. There's quite a bit of research with that. I don't know that there's research to say that you could prevent it by doing it 10 years earlier, it's never too late to start is probably the kind of the best take home around that. But yeah, I think that self care is one of those aspects that it's a word. It's a word that gets thrown around a lot, and and sometimes more helpfully than others. But I do think that we need to start expanding our view of self care, and thinking about more than just like going to the spa and getting a massage. Can you tell us a bit about your self care practice?

Jen  12:24

Well, yeah, exactly. Well, you know, bone health is very important for women in general. So I do a lot of strength training, and I go do strength training at the gym about three times a week. I also have a meditation practice. So anything that we can do to just deal with the stress and just being around tech all day and taking time to slow down. That's really important to me. So I like to practice yoga and do meditation as well. Aside from that, going on, walks it outside as much as possible, taking my dogs for a walk.

Jenn Huber  13:06

Yeah, I love I love getting outside, I think I call it my nature fix, you know, anything that gets me like outside and the further away that I can get from technology, the better, I'm able to disengage from it, because I absolutely am one of those people that because you know, I work from home, all of my work is based online. It's so easy to feel like, attached, you know, at the hip, as it were to this technology. And it's just so easy. It's like, oh, I have a few minutes, oh, I'm bored. Oh, I want to do this. But when I get out in nature, I don't want to do that. And that's what I think the gift of that that time in nature is for sure.

Jen  13:48

Exactly. It's so peaceful.

Jenn Huber  13:52

So it sounds like your experience was unexpected and obviously unwelcome and but once you were able to get a diagnosis and get some treatment and thankfully have found us and you know now in the more recent years, feeling like you have a bit more support, not just kind of socially but also medically and that you have a good plan and that's that's definitely definitely bodes well for the future for you. So I want to hear a little bit more about your meditation practice. So what kind of meditation because if I can, if I can spill the beans that you also have a podcast, which is called Peace, love and meditation, so obviously it's something that you feel very, you know, passionate about and met it and so full disclosure type a I'm a type A person with ADHD meditation is high on my list of things. I wish I could do well and have tried so many different ways of incorporating it. And I have I think I have like a hamster wheel or 1000 of squirrels in my brain because I can not slow my squirrels and I'm always distracted. So tell me a little bit about the meditation.

Jen  15:04

Oh, yeah, well, I came to meditation because of anxiety. And I have those hamster wheels going on in my head. But, yeah, I found that no matter how much time you can put towards it per day, even if it's just a few minutes is going to be helpful. One thing that you can do is just start to notice how your mind is shooting out all of these thoughts all over the place, instead of attaching on to them and going along for the ride, just kind of watching them fly by like, wow, my mind is really flying today. And just kind of getting that awareness going. And that can really help to start settling it. Another simple practice would be just to focus on how the breath feels as it moves in and out of your nose.

Jenn Huber  15:56

I have done that when I've done the alternate nostril breathing, because that definitely does connect me a little bit more to like what I'm doing. Is there a particular type of meditation that you practice?

Jen  16:12

Oh, well, I mostly enjoy the ones that kind of deal with energy movement. So a very grounding meditation would be one where we can focus on our bones and our body just kind of internally mapping out, like, where's my spine, where's my ribcage. And that can be a very grounding thing, another type of energy practice. So so much of our day is spent giving out to others moving forward. So any sort of meditation practice that's going to bring that energy back within us is going to be so nourishing. And one way that I like to do that, which I learned through IR VEDA school, which I took the Shakti school, is to just imagine like there's a waterfall above your head, and very slowly, like perhaps even honey, moving slowly down the back of your head all the way down your back back to the legs and out your feet into the earth. And that can just be really ground.

Jenn Huber  17:20

Yeah, that really resonates with me. That's awesome. I know, we were talking about like poi but I really liked that squeaked in a little bit about meditation. Because it, you know, in terms of self care practices, there's so much evidence for meditation, and people who have, you know, an established meditation practice really do find that it. It's a great tool. So I think that introducing that at any time in any topic is is always helpful. So thank you for sharing with that. Thank you. So what would you say? Is there anything else about your experience that you would want others to know about or any kind of takeaway parting words?

Jen  18:03

Well, I would just say, to just keep trying to ask questions and find as much information as you can, because the more that we know now is going to help us to put those practices in place to be healthier in the long run. So whether it's asking your doctor a million questions, or finding a group that you really resonate with, or finding an articles and research online, that's what I've, all those things are what I've been doing. Yeah. And they just helped me kind of understand what I'm going through and how the best way for me to move forward is.

Jenn Huber  18:43

That's awesome. Thank you so much. So what would you say is the missing ingredient in midlife?

Jen  18:51

Well, I think the missing ingredient is knowledge. And because there's so much misinformation out there, and everybody, then you have your experience and you're like well, that's kind of not really what I've been told about this. So I think by sharing experiences and by doing research and just increasing our knowledge, and that's the missing link.

Jenn Huber  19:16

Yes. And also just sharing stories, which is what you did with us here today. So thank you so much, and thanks to everyone for for tuning in to this week's episode of the midlife feast. Thanks for tuning in to this week's episode of the midlife D. For more non diet health hormone and general midlife support. Click the link in the show notes to learn how you can work and learn from me. And if you enjoyed this episode and found it helpful, please consider leaving a review or subscribing because it helps other women just like you find us and feel supported in midlife.