12 l PCOS Awareness l Symptoms, Diagnosis and Support

As PCOS Awareness Month commences, we are presented with a ripe opportunity to have a heart-to-heart about Polycystic Ovarian Syndrome (PCOS). Engage with us as we unravel the intricate tapestry of this condition, marked by an abnormal production of androgens in the ovaries. Bri talks to Felicia in this interview-style talk, where Felicia opens up about her personal battle with PCOS, shedding light on the myriad symptoms she has braved. In her candid account, Felicia paints a vivid picture of the journey from missed periods, excess body hair to severe pain during periods, all leading to her diagnosis.

Navigating further into uncharted territory, we aim to discern the complications that can arise from housing multiple cysts in the body. Through discussions grounded in medical facts and personal experiences, we strive to offer a comprehensive understanding of PCOS, its potential impact on quality of life, and the path towards diagnosis via ultrasound. We acknowledge the emotional toll this condition can impose, especially on those yearning to start a family. Hence, we advocate for a supportive environment where we stand in solidarity with each other, fostering strength and resilience in the face of PCOS. Tune in, arm yourself with invaluable insights about PCOS, and learn how to maneuver through the challenges it may present.

Thank you so much for joining us today . We’re so excited you’re taking this journey with us! They say it takes a village, welcome home mama!

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Felicia’s Instagram: @Felicia_Sorby
Bri’s Instagram: @Brie.Rodriquez

Transcript

Speaker 1: 0:09

Hey Mama, welcome to Postpartum Confessions, a podcast for anyone navigating the ups and downs of becoming a mom. I'm Felicia.

Speaker 2: 0:17

I'm Bri and we're here to bring you truly unfiltered conversations from the expected to the unexpected parts of being a mom, whether you're trying to conceive, pregnant or already a mother, this podcast is for you.

Speaker 1: 0:27

Let's discover the secrets no one told you about motherhood and how to overcome them together. They say it takes a village. Welcome home.

Speaker 2: 0:34

Are you ready? Let's dive in.

Speaker 1: 0:44

Hey Mama Felicia here, Welcome back to Postpartum Confessions. Today we're going to talk about all things PCOS. As some of you might know, today marks the start of PCOS Awareness Month, and I myself have dealt with it for some time now, so we're going to give you the inside scoop.

Speaker 2: 0:59

Hi Mama, this is Bri. Now, I do not have firsthand experience with PCOS, but I do know the importance of it and what a struggle it can be for some women. The more information we can get out there, the better. So today we're going to do a mini Q&A style episode with Felicia. So before we dive in, I'm going to share what PCOS is.

Speaker 2: 1:19

Pcos is Polycystic Ovarian Syndrome and it's a condition in which the ovaries produce an abnormal amount of androgens, which is a male sex hormone, that are usually present in small amounts in women. So the name describes the numerous small cysts or the fluid-filled sacs that form in the ovaries. However, some women with PCOS don't have any cysts and some without will develop cysts. So it's complicated. But in some cases women don't make enough of the hormones needed to ovulate. So when ovulation doesn't happen, the ovaries can develop many small cysts and the cysts make the hormones called androgens. So women with PCOS often have higher levels and this can cause more problems with a woman's menstrual cycle and lead to other symptoms which we'll get into right now. So, felicia, can you share with us some of the symptoms of PCOS or what women can look out for if they think they might have it?

Speaker 1: 2:18

Yeah, so women who have PCOS may not ovulate or they will have very unusual or long periods or long periods of time between cycles, like 50 days to over 100 days. It can vary in between for everyone. So you can have high levels of androgens, excess hair growth, acne, infertility and weight gain. Wow, you can also experience a lot of pain and that's something that's not talked about a lot. But if you're having a lot of pain, especially during your periods or even the time in between your periods, definitely reach out to someone or your provider, because that can be an indicator of obviously larger problems. But also PCOS and some more of the less talked about symptoms can be missed periods, a regular periods or very light periods, ovaries that are large or you have many cysts surrounding them, so those are going to be dormant. Obviously the eggs are not being released, so they kind of lay dormant around your ovaries and can develop into cysts that are enlarged and have a lot of fluid in them and can burst.

Speaker 1: 3:23

You can also have excess body hair, including the chest, stomach and back, weight gain, especially around the belly, acne or oily skin, male pattern, baldness or thinning hair, infertility, small pieces of excess skin on the neck or armpits, like skin tags, dark or thick skin patches on the back of the neck and the armpits and under the breasts. So those are all symptoms that everyone can have, either all of or only a few of or just everything in between. There's nothing that's really going to be, I guess, like form in the way of everyone has the same thing. It's always going to be different, which, as we know, it comes with most things for women, I feel like. So really, it just can be very random. So if you just have any of these things and you're uncomfortable or have pain or you're noticing that you're getting even three or more of these symptoms, I would just check with a provider with healthcare and just get it checked out, because it can always run tests.

Speaker 2: 4:21

Well, I didn't know that there was so much into it or many other symptoms. I knew that there was pain associated, but I also didn't know that it could be outside of the period. That's excruciating.

Speaker 1: 4:33

Yeah, and I dealt with a lot of the pain portion. So I definitely advocate for that because it's really not talked about and I for one, which we will get into later in another episode had a huge, huge problem with being totally dismissed by my doctors when I first wanted to get diagnosed. So it took me over six years to get my diagnosis. So it can be hard when you don't know what to look for and you don't qualify in their eyes, having like X of X amount of symptoms and whatnot. So it's very possible to have this and to not check off every box per se, but you can still experience all of the you know the A through Z that comes with it, with the excess hair and the hormone being thrown off and the missed periods, and not ovulating is a huge one, yeah.

Speaker 2: 5:20

We'll get into the diagnosis and treatment in just a minute too, but I think it would be great if you could share a little bit more about like your experience with PCOS and why it's important for us to know more about this. I mean, like you mentioned earlier that this is the start of PCOS Awareness Month, and I mean the more knowledge we can get out, the better. So if you can shed some light on that, that'd be great.

Speaker 1: 5:42

Yeah, of course. So when I was about 16 years old, I started having really, really painful periods that were really heavy. I'd have to change pads or tampons within the hour and a lot of times they like tell you, like, oh, that could be considered like a problem or something. So I brought it up and my doctor had just basically told me oh, we'll start, you're on the pill. And as a 16 year old, like young woman, I was like, okay, you know, and that sounds normal, like I feel like to me there was like, oh, a timeline of when, like, people should start the pill. And now I know that that really was not the best choice for me because it really started to throw off everything.

Speaker 1: 6:19

They told me to take it straight for three months with none of the sugar pills that they have.

Speaker 1: 6:25

So I'm going to take it for three months, and so that I didn't get a period for three months when it was kind of I feel like I don't even know if I necessarily would have gotten one or not because they were so irregular, but I basically took the pill like that for about four years.

Speaker 1: 6:45

So for four years I was doing three months on one week off, three months on one week off, and that's what they told me to do.

Speaker 1: 6:52

And when I got off the pill, because I wanted to start regulating my body and my hormones to see if there was like a problem here or if it was because the pill at this point was kind of just like doing its thing so, you know, I got off the pill and I was experiencing 120 day cycles. So I would get a period maybe, and I didn't even know at that point if I was ovulating, but I would get the period and I would have like 100 days where I just wasn't happening like anything, nothing was happening. So I was just in my mind, at 20 years old, I was like okay, you know, whatever, like I don't have a period, that's kind of great on my part, I don't have to deal with the pain or anything, I don't have to deal with the bleeding or anything. So I just was kind of in a place at that point where it wasn't like big deal to me.

Speaker 1: 7:37

And then, of course, when I, you know, wanted to think, about having my baby Riley, I was like you know, this isn't obviously going to work if I am not getting periods. So I had brought it up one because I kept getting this like really bad pain. The first one I got when I was 18, and then I got another one when I was 19. And then I had surgery actually to check to see if I had endometriosis, because I was having similar symptoms to that with the bloating and the skipped periods and the pain. So we had checked that and they found a huge cyst on my wall of my abdomen and I also had found that my ovaries on one side had 13 of the dormant eggs or cysts and I had 11 on the other. My ovaries were also larger and they measured that and they still told me that this does not qualify as PCOS. Their exact words and I remember this very vividly was just because you have polycystic ovaries does not mean you have polycystic ovarian syndrome. And I was like, okay, so what can we do about this? Because I am in pain and the cysts kept bursting and they told me that I could go back on the pill and that was pretty much the only solution for me and it was probably because I was younger. I'm not quite sure of the reasoning 100 percent, they didn't tell me. So I was like I'm not doing that and at that point I was like they're not going to help me. My doctor told me I was too. I guess her wording was that I was not getting diagnosed because she didn't believe that I'd met the four out of four symptoms that they have on their qualifying books or whatever. Okay, because the only symptom that I did not have was I was not overweight, so they would not diagnose me. And while that is a huge symptom and I totally understand that, I will never understand that part of the PCOS that does not mean that you don't have it and that does not mean you don't go through the pain and through all of the struggles that come with it. And it is just something that I don't think is really looked for, because they just assume that you don't have it because you don't have the excess weight gain, because I also had, at the same time, an issue with my thyroid. Therefore, I was underweight because my thyroid was overactive, so it just wasn't really something that was going to happen for me. I wasn't just going to be able to gain any weight because my thyroid was so overactive at that point and they had confirmed that with a blood test.

Speaker 1: 10:08

At that point I just kind of understood that they weren't going to help me in that area with the symptoms. So I just bought a bunch of ovulation tests and I honestly just got in my head about it and I really just, every single time that I felt like I should be ovulating, I would take tests and everything. And I guess, long story short, the only reason why I had my daughter was because I got those tests, those ovulation tests, and I took it like religiously and had like a 90-day cycle and magically got to find the one day that I was ovulating. But I didn't get the help that I needed, which is one reason why I think this is so, so important, because I don't know if I didn't ovulate at all, I would have had to take medications. I would have had to see fertility specialists at some point if this had gone on for too long.

Speaker 1: 11:03

So I did get officially diagnosed the day that I went in to get my blood test to confirm I was pregnant with Riley, because I had seen a different doctor and she had seen that ultrasounds and said I just want you know that you have PCOS and I started bawling my own sound, probably partially because of pregnancy hormones, but it was just like so interesting to me to see that someone had just seen the ultrasound and didn't even have a conversation with me, didn't need to, and was like you have it, but my primary doctor would just refused. So it was just. You know, it's a process and it can be very frustrating because you feel like your body's fighting you and then you have doctors fighting you on it too and just to put out there that the symptoms aren't curable. But they are. You know you can get help and that's what I was looking for and they just. You know, it was just really hard.

Speaker 2: 11:54

Yeah, I can see that I mean. So it was just for my knowledge and understanding too. You have the cysts and they burst. So I'm thinking of if you have other cysts or like other things and you know like, even like a, if different things like burst in your body, then is that, can that lead to like a major complication, like an infection or something like? Because I'm thinking like you know other cysts that have like toxic things. Yeah, is that like what it could happen with them, like multiple bursting? And then second part of that is do you always have the cysts or do they go away or do they keep forming, like you know how she said, do you look at the ultrasound, like, do you still have some?

Speaker 1: 12:39

Yes, so I guess that's a hard to answer. But from my experience, from what I know from when I got the ultrasound, was that I had the 11 and 13 that were dormant. They weren't large, so I know that they weren't like about to burst. But the ones that did the way that they confirmed that that's what it was. I had fluid the three ultrasound that I got to confirm that they were cysts that had burst. I had a fluid in my abdomen so they could confirm the surmounting pain and then I went in and then we got the ultrasound and then we saw the fluid. So they confirmed that those were cysts that had burst.

Speaker 1: 13:18

They did tell me that they check to see if I'll need antibiotics, but never told me how we would confirm that, because I know that sometimes I'm sure, especially if someone gets a really large one, that they would want to make sure you don't get infected. But I've never had to take antibiotics but I know some people that have, even though they've only had like one cyst. So I'm not quite sure where the disconnect is or how they determined that because I never had them. But I would assume that of course, if you have any fevers after or if you're not feeling well, to definitely go in and make sure that you do. I just never felt that way, so I think that would be why. But I guess you'll never know if they keep happening until you have the pain that's. The unfortunate part Is that one after another can happen and they can grow pretty big.

Speaker 2: 14:07

But I would not know unless I had the pain and so far I've only had three that I know of, and so, since having your daughter, have you had some of the same pain, or is the period still irregular?

Speaker 1: 14:19

The period is still irregular and I know, obviously at the six week mark when they tell you, or even before you leave, that oh, you should think about contraception, because breastfeeding is not contraception. And then a month ago I was told that I cannot get tested for PCOS again to read diagnose myself because of a whole long, rather story. They told me that I would have to stop breastfeeding completely first for them to even acknowledge that because it can stop ovulation, which I understand. I'm not saying they're wrong. I see the little two sides of the story there. But yeah, so I have had the pain once, but it wasn't as bad as I would go in for usually. So it's kind of hard to say.

Speaker 2: 15:01

Yeah, no, I ask and I mean I think I appreciate you like getting into details and answering these, just because I know it can be personal, but I think the more I don't know you share different possibilities. It at least gets people thinking and being able to understand a little bit more. What about? So? How does one go about getting diagnosed and what would treatment if you are diagnosed look?

Speaker 1: 15:29

like. So I guess, like getting diagnosed, like because of my experience I know it can be a little difficult if you, like I said, don't meet like X amount of symptoms, but if you have even like three or four of these symptoms or you're in pain, I would definitely fight for it because it is the first step that you need, especially if you're going to want to plan for a family or you're just in a lot of pain and it affects your daily life. Anything that affects your daily life you should definitely get checked out for and fight for and like what you're going to be like looking for and like why it's important is, again, like I said, daily life, quality of life, and also like the fact that one in 10 women have dealt with this or deal with this, especially between, like they say, reproductive age. But that's like a huge you know, like that's a lot of women, so one in 10 and then 70% of that is undiagnosed, which I do not have a hard time believing that at all at this point. And you know, like that speaks volumes about one people not knowing possibly about what those symptoms are, because a lot of the time, people that I've spoken with just assumed that they have, like you know, they're in the tough period category where their periods are just like heavier or a lot more painful and they just don't think anything of it. So that's one, and then also the, I guess, the right fight that you have to have with the doctors, sometimes about getting the official diagnosis, and then also just wanted to mention, of course, everyone's journey is different, so you know it can be better when you're younger and get worse, or it can be worse when you're younger and get better.

Speaker 1: 17:10

And you know if you want to, like I said, start a family, you can be really emotionally taxing on you because you know you just feel like you're fighting your body and your body's failing you. Because you see all these people that don't have to go through all those things or you don't have to go through the testing and they don't have to go through all the ultrasounds and all this stuff just to get a diagnosis, so that possibly you have this like medical crutch that some people call it, to have to take that medication to have a baby, which is, in my eyes at least. I don't see a problem with that, because it's just, some things just don't come naturally just because of hormones, and that's just. You know, plain and simple. Just it happens so people have to take medication.

Speaker 1: 17:53

You know IVF, of course, and IUI, all of those things PCOS typically will lead to if it's really severe, and you know that's in itself a long process. So it's just. Those are all things that you know, you bring awareness to and that people understand is that PCOS comes hand in hand with a lot of extra. You know things to juggle and at the end of the day it's just very emotionally taxing on everyone that has it in the struggle that they get from place A to place Z. So it's just definitely difficult for people. So I totally understand the importance of that.

Speaker 2: 18:28

For sure. What would be the best way, then that a person can support someone who has PCOS, Because you know? I mean, if somebody might know and I don't know is it, is there anything that can be done as a friend, as a partner, as you know, a family member, to help support someone?

Speaker 1: 18:52

Yeah. So of course it's like you know, there's not like something that you can do directly, which is hard. That's like one of the really hard parts. But I guess it all depends on where they are in their journey. But, you know, just being a shoulder to lean on, just you know, if they need to vent, if they need to take a cry, they just need to do something like that. Just being there for them is something huge. Then not everyone really necessarily gets when they're going through something like this.

Speaker 1: 19:18

And then also, if you're a partner or if you're really close to this person and you're willing to take on part of that journey with them because I, like I said, I didn't have the hard part of you know, the weight gain, which can be very hard because you're doing everything you can to combat that and it's just not working. But if you want to try to, you know, change your lifestyle or start working out more, and you have a friend or family member or spouse that wants to do that, being very supportive of that or even being willing to take that journey with them so that they have like a partner, like a workout partner or something with them, would be like awesome, because I know a lot of people just find it more, you know, first of all, accountability is easier with someone else, but also just have more fun conversations during walks or runs, you know that kind of stuff. And then also being a support person during any of their doctor's appointments at least for me, and I know some other people would have been great, because it's hard hearing those things when you're alone or it's hard sometimes to kind of, I guess, stand up for yourself in some ways too. So if you have someone that's willing to even just go to some of those appointments with you when you know there might be some pushback on things or there might be some difficulties hearing some things, and that's always a good thing too. So, I guess, just being there for them and being really supportive and possibly taking part of that journey with them, yeah, that's great.

Speaker 2: 20:43

I mean, I think we underestimate a lot of times what just support and being that shoulder can, or how helpful that can really be, you know, but jeez, I mean I think it's definitely opened up my eyes. I didn't understand, I guess. I mean, if you don't go through it, you obviously we can't relate to the struggle or anything, but I mean it just adds to the list kind of a lot of things that women silently deal with sometimes. But the more I don't know, the more we know, the better. When I was doing a little bit of reading on it too I was I didn't realize that, like, blood glucose levels can be elevated and become part of it too.

Speaker 2: 21:22

So when you're, when you were talking about adopting a healthier lifestyle or activity level, that might be something that is helpful, but it's it also is really hard to do. So that support there is crucial. But yeah, there's just so much that goes along with it. But I don't know. Thank you for being open about it and sharing a little bit more with us so that we can all get a better understanding too.

Speaker 1: 21:42

Yeah, of course, and like I said before, just the quality of life can just be impacted in different ways for everyone. And so I guess just making sure that the advocating for yourself, if you have any of these things can really you know one person, it goes for the next person and so you know you start somewhere and it can lead somewhere else for everyone else. So I guess, just making sure that you can advocate for yourself and if you have someone that you know maybe struggling with symptoms and hasn't taken that first step yet, just encouraging them to do so.

Speaker 2: 22:13

Yeah, that's a good idea. I think sometimes people are really scared to even say something so encouraging you know that there might be not. That's like, oh, something's wrong with you yeah. You know, but that you know that maybe life could be improved, and sometimes it is scary to take that first step, so that encouragement could be very helpful.

Speaker 1: 22:30

Yeah, and like I said before just wanted to put this in case anyone didn't hear it that it's not curable. There are some treatment plans, like the pill like they gave me, and like changing diet or activity and obviously, medications to help with ovulation, if that is something that you wanted to do. So they do have treatment plans, but they're not totally curable, unfortunately.

Speaker 2: 22:52

That is good to know, just in case. Or I don't know if you were hoping for something. You know, yeah, if you were diagnosed with this, well, goodness, I know I'm at a little bit of a loss. Sometimes I'm like geez, it just makes you think about, I mean, even when you cramp on like a period without PCOS and it's like incredibly painful. Just magnifying that and having to deal with that regularly would be something that's for sure.

Speaker 1: 23:18

Yeah, and it's a little difficult sometimes with trying to do things, as you know, probably with if you have any pain during regular cycles where you just kind of go out and try to do something and you're like it hits you and you're like, of course I'm trying to do something, but it's just hard.

Speaker 2: 23:33

Yeah, I bet Goodness. Well you know. Thank you again for sharing, and we're going to keep this episode short and sweet, since it's a mini. So that's all for today. So to help share and bring more awareness to PCOS, share this episode while you're listening to it on Instagram and don't forget to tag us. All right Bye, mama. Thank you so much for joining us today. We're so excited you're taking this journey with us. If you enjoyed this episode and you'd like to help support the podcast, please subscribe, leave a rating or review or tell another mama about us.

Speaker 1: 24:09

To stay up to date with post-partum confessions and get all the behind the scenes content, you can join our email list or follow us on Instagram at post-partum confessions. Underscore. All the links are in our show notes. They say it takes a village. Welcome home, mama.