SART Fertility Experts - PCOS

The information and opinions expressed in this podcast do not necessarily reflect those of ASRM and SART. These podcasts are provided as a source of general information and are not a substitute for consultation with a physician. Welcome to SART Fertility Experts, a podcast that brings you discussions on important topics for people trying to build a family.

Our experts are members of SART, the Society for Assisted Reproductive Technology, an organization dedicated to ensuring you receive quality fertility care. Hello and welcome to another SART podcast. I'm your host today, Dr. Mark Trolice.

Arguably the most frustrating problem for women in their reproductive years is a hormonal disorder called polycystic ovary syndrome or PCOS. This affects 8 to 13 percent of reproductive age women and in some studies up to 20 percent, so one in five women could be experiencing this problem. It is terribly frustrating for women as well as some physicians who have difficulty making the diagnosis.

We're going to talk about that more today with a patient who has PCOS. The topic today is PCOS, a woman's journey, and with me is Brittany Pendleton. Brittany has been diagnosed with PCOS and she is gracious enough to share her story today.

Brittany, welcome to the SART podcast. Thanks so much for having me. It's really an honor to be here.

Oh, it's completely ours for you to take the time and for you to be able to disclose and help others. So when did you first feel that there was something going on, that it just wasn't right in terms of your menstrual cycles or you just weren't feeling right about things? Sure, yeah. So I actually have one daughter who I conceived completely naturally without any sort of intervention at all, very quickly.

And so at that point I thought, okay, any risk of fertility issues is behind me. I'm obviously great. I'm fertile.

And when we went to have our second child after a few months, we weren't getting pregnant and I had this gut feeling that something wasn't right. And it sounds so weird to say that because there's nothing glaringly obvious. I didn't have anything crazy going on, but I knew something wasn't right.

And so I ultimately went to the OBGYN and was really dismissed because of my age. And I was a healthy weight. I seemed very healthy.

And it wasn't until a year of trying when I went to a specialist and they told us, oh, you have PCOS. And it was a shock to me. Absolutely a shock because I don't have some of the more obvious physical symptoms that I thought always came with PCOS.

So first baby was after years of birth control pills, or you just tried to conceive? It was after birth control pills. We were on birth control for about eight months. And as soon as I came off, she was there.

It's interesting that I see so many patients, Brittany, with PCOS who have the first baby without difficulty. And I believe it is the restoration temporarily of hormonal dysfunction on the birth control pill, because when they come off it, their periods are regular and they're ovulating regularly for a while. So they're able to have baby.

And then afterward, they don't go back on the birth control pill for as long a period of time because they don't want that kind of spacing between children. So their cycles are not affected in a positive way from the birth control pill and or they may gain some weight after pregnancy. So the second child is usually the more difficult one with PCOS patients.

And I'd be interested to know how long it took for you to get diagnosed because there's an interesting study. It was a survey of almost 1400 women and one third or more reported a delay of greater than two years and nearly half required evaluations by at least three health care professionals before a diagnosis was established. What was your journey like? That's so sad.

Yeah, it didn't take me that long, but I'm a very aggressive person. Anyone who knows me will tell you that. But I went to two OBGYNs and ultimately was not satisfied because they were willing to put me on Clomid, but they weren't telling me why I wasn't able to ovulate or what was going on.

And to them, I seemed healthy and they thought I was just stressed that I was putting too much pressure on myself. And so when I went to the clinic that I chose, I chose the clinic very carefully because I knew who I was seeing was the best. And after the first meeting, I felt like we were going to get answers.

And ultimately, within a couple of weeks, we had our diagnosis. And I'm so grateful that I didn't just stop at just medicating over the issue, just getting to the root of what the problem is. PCOS can run in families.

We don't have a really easy inheritance pattern to understand. It's what we call multifactorial. But there is some genetic link.

Anybody in your family with this? So it's interesting. I learned that recently, and I think my grandmother might have PCOS. She was never diagnosed, but she has a lot of the physical symptoms.

She had recurrent miscarriages, long gaps between some of her children. And so I think possibly, yes. So interesting you talked about miscarriage.

For our listeners, PCOS is a reproductive and a metabolic disorder. So reproductively, women have irregular cycles, sometimes hemorrhaging to go to the emergency room, or they don't have periods at all. They also have higher rates of infertility, of course.

It's really the number one ovulation dysfunction for women, and arguably the number one reason that women are unable to conceive. So the other reproductive problems are miscarriage, as well as diabetes and pregnancy. We'll talk about the metabolic issues in just a moment, but I wanted to mention that when you started to get treatment, share with our listeners, Brittany, what did you go through? What kind of testing did you have when you saw the specialist, and then how was this managed? Sure.

So we did some basic blood work just to test where my hormones are at, and ultimately that's where I found I had elevated testosterone. How that was missed by the OBGYNs, I'm not really sure. And then we also did some genetic testing to make sure that there was nothing on that end that was preventing us from getting pregnant.

So that was basically what we did at first. That was the most obvious issue was presented through seeing that I had elevated testosterone. It wasn't ovulating, all those sorts of things.

The diagnosis is not very complicated, but as you just shared, it is missed, unfortunately. So most of us have accepted the Rotterdam criteria from 2003. So the diagnosis is based on having two out of three criteria.

And one is ovulation dysfunction, irregular cycles. So a woman's cycles, say we say 26, 28, 30, 32, as long as they're regularly at those numbers, that's fine. Much more frequent than that or longer than that is abnormal.

But even if you have it within 35 days or more than 24 days, if you have it within the month or so, but they're all over the place, that's not normal either. In other words, if it's 25, one month and then 34 the next month and back and forth. But the other interesting thing is that 20% of patients who have monthly cycles with PCOS are estimated 20% are not ovulating.

I remember I had a patient, doctor's wife, and she had clockwork cycles and we were not figuring out why she wasn't able to get pregnant. Then I was suspicious for PCOS based on other characteristics and we checked her blood progesterone level and she wasn't ovulating, which was really, really the first time I was able to see that. We did ovarian drilling and we'll talk about your story as well, but we did ovarian drilling and then her cycle stayed monthly, but she was ovulating.

So really, interesting. So we talked about ovulation dysfunction and then we talk about the second criteria is some measure of elevated male hormone, because PCOS, the brain signals to the ovary are just not synchronized. So they have chaotic signals and the ovary starts producing a little bit male hormone.

Men have female hormone, women have male hormone, but a lot more you need to be a man and woman. So some measure of elevated male hormone, either from total testosterone or another hormone called DHEAS or some hair growth on the upper chin, sideburns, lower belly, lower back, chest, and that can be pretty cosmetically disturbing. And the third criteria is ultrasound.

All these little baby cysts on the ovary that represent microscopic eggs, that's normal to have, but having more than normal is also a criteria. So, in addition to your testosterone, you were diagnosed, how? So I did have some cysts and then, yeah, I just am not ovulating based on our blood work that we saw. So what happened then? You attempted to go through ovulation induction and then what happened? Yeah.

So we experimented with letrozole for whatever reason. My body does not like letrozole. I got all the way up to 7.5 milligrams and nothing was happening.

But then the next month I had 11 follicles and then an unresolved cyst. And it was extremely taxing to go through that process over and over and know that my body isn't responding to the basic medication that works for everyone else who has PCOS. And that's what it felt like.

And so at that point, we were presented with three options. We can either continue experimenting with the letrozole, which was fine, go to IVF or go for ovarian drilling. I knew I couldn't handle doing letrozole anymore.

IVF wasn't on the table for us and ovarian drilling seemed very appealing because we knew it had the potential to be a lifelong fix for us. We want multiple children. We want at least three or four or five kids.

And so the possibility of this working and working for a long time was very appealing. And you went through ovarian drilling? I did, yes. We had an amazing surgeon who made us feel extremely comfortable, was very positive throughout the entire experience.

And ultimately when he went in there, we also realized I had a block too, which we didn't realize before. So that was interesting to know too and to be aware of. And so it's been, I think, two months since we've had our drilling.

So far, nothing has happened quite yet. We're not worried. We're trying to stay as positive as possible, just taking all the pressure off and knowing it's going to work for us.

We feel that it's going to work for us. I think ovarian drilling is a great option because it avoids injectable fertility medication, which is a higher risk of high-order multiple birth and risk of something called ovarian hyperstimulation syndrome and increased costs. And you need to do it every single month.

But whereas ovarian drilling, if it is successful, you could potentially conceive naturally as long as you at least have one tube open and normal sperm. So I like that as an option. So while you're waiting for ovulation to resume, hopefully, how would you describe living with PCOS, Brittany? What did it feel like? What's the worst part of PCOS for you? And I've had some women even say they don't feel like a woman because of this.

Could you share with the listeners? Okay. I'm going to try not to be emotional because this is very difficult for us. It's really hard to live with the burden of knowing that my body is not doing the one thing that I want it to do and that it was meant to do.

And everyone around me is able to do this and get pregnant and they're not spending nearly as much time and money and effort. And it really is hard. Like I said before, I'm an aggressive person.

I feel like I'm controlling. I'm a planner and my body is just not responding how I want it to. And so yeah, every month you have to fight that urge to just feel sorry for yourself, to get in the trap of looking at all the pregnancy tests and tracking everything so crazily.

And it is overwhelming at times. And so we're trying to shift now to recognize this is something that we're going to live with and it's okay. And I'm not defined by my ability to ovulate every month.

Well, remarkable, remarkable response to this, Brittany, in terms of your outlook. Your family must be so proud of you. And thank you for sharing that.

What would you like to tell others that are enduring the burden of PCOS? Yeah, I think there are three things that have really helped us during this time. And the first one, if you don't have a good support system, is doing everything you can to find a good support system. We have one or two friends that we've chosen to be very, very open with and share everything with them.

And it has been amazing just to feel the encouragement after every failed cycle, every appointment, to know that people care about what is happening and they're invested. The second thing has been our faith has really sustained us, has made us feel like this experience is not purposeless. It has a purpose and really helped us through the difficult times.

And the last thing is we got the advice from our doctor to remove ourselves from social media. And really, really game-changing for us. I know that it is amazing tool for a lot of things.

But when you are in a lot of despair over your situation, it is really discouraging if you're on there too much. So now we use it every once in a while when we feel like we're in a good place, but it's not an everyday thing for us anymore. And those three things have really, really helped us.

Such invaluable advice, Brittany. I'm sure all of our listeners who are struggling with PCOS are going to benefit from those from those recommendations. I wanted to get back to the fact that PCOS is not just about infertility.

It's a metabolic disorder. And just to review these problems that women can have, something called the metabolic syndrome, where they have higher rates of pre-diabetes and diabetes, as well as blood pressure elevations, elevations in triglycerides, abnormal cholesterol, the HDL cholesterol is low, which is the good cholesterol, as well as weight, increasing abdominal circumference around the waist. PCOS patients have higher rates of depression and anxiety.

And we talked about the hair growth, uterine cancer from not ovulating in the body, just producing eschogen, particularly overweight women who have the eschogen produced in the fat cells, as well as sleep apnea. So it's not just about fertility. This is really a multi-factor problem that is lifelong, unfortunately.

And the best thing that women can do with this problem is to stay on top of these risk factors, to be aware of the risks of the diabetes and the high blood pressure, keeping your body weight within normal range. It doesn't mean that you will rid the problem, but a normal body mass index will reduce the risks of these problems. It's about 50-50 in terms of weight.

Years ago, we used to think you had to be overweight to have PCOS. That's not the case. So please be conscious of those kind of things.

Brittany, is there anything else you wanted to share about your journey, your outlook, how you want to proceed from this point forward? Sure, yeah. I think we're feeling, like I said, optimistic about the future. And I think part of that has been, we've kind of let go of this idea of having to have another biological child.

We're really excited about the option of embryo adoption. I really hope to pursue that if things don't work out for us. There's a lot of babies out there who need homes.

And even if that meant traditional adoption, we feel very excited about our future now, which is very new for us. But I really hope that anyone listening who's feeling discouraged can get to that place too. It took a lot of hard work, but I'm really happy to be here right now.

Well, I know I could speak for my organization that we are so happy that you're here right now, because you have added so much to women's knowledge of the problem of PCOS, not just awareness, but how to endure this journey and to do it admirably. So kudos to you, Brittany. Thank you so much.

I want to thank you all for listening. This has been very rewarding to me, and I'm very, very proud of Brittany's experience, how she's been able to endure this. So until next time, this is Dr. Mark Trolice.

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