A medical condition that affects 170 million women worldwide.

Just got a name change, and it's a big deal.

You see, the old name was considered outdated and led to all sorts of Band-Aid fixes and a lot of misunderstanding about the root of the problem affecting 1 in 8 women who range in age from puberty all the way to menopause.

One of the two US based pediatric physicians involved in this big global name change is Doctor Melanie Crane, professor of pediatric endocrinology at the University of Colorado.

And she was and also the director of a clinic.

Focus just on moms at Children's Hospital Colorado.

And then also with you is Grace Hamilton.

Grace, thanks so much for coming in.

Grace is living with Moss, and she's going to talk about the symptoms that she's had since she was 14.

And you met through a clinical trial.

So things are looking good.

But first let's talk about what is Moss.

What does that stand for?

The M is for metabolic.

That's a change.

Explain what we're talking about here.

Yeah.

So the old name was polycystic ovary syndrome.

Okay.

And part of the problem with that name is there are no cysts in the ovaries in this condition.

Okay.

So the name has always been incorrect.

And then it made it primarily focused on the ovary.

And there is so much more to this condition.

And so the new name is poly endocrine because it involves multiple different hormone systems.

Metabolic because there's much greater metabolic risk still ovary because there are still some issues with infertility in some women.

And then syndrome just because it encompasses so many different conditions and almost all parts of the body.

All parts of the body.

Grace, thank you for talking about what you've gone through.

You were a 11 or so 14.

Those early ages are so confusing because your body is changing.

What stood out to you this that you look back now and be like, oh, that was a red flag.

I never had regular menses.

Okay.

So I started cycling when I was 11 and by 14 they weren't regular.

Okay.

So we kind of had a feeling there was something a little off.

So I would think you go to your doctor and your pediatrician and what do they say to you?

Well, my doctor, in my position at the time, asked a lot about the foods I eat, about my activity level.

We constantly were testing my thyroid.

We looked at my insulin.

All these things were coming back.

Normal.

All normal.

So.

And.

Okay, so that was 11 to 14.

And then as you were getting older, what were the symptoms that were still plaguing you?

I still didn't have regular menses.

My adult acne was really horrible.

My hair was falling out.

Mood swings.

And so they gave me birth control.

Probably to come back if I want to get pregnant.

So they said it's a hormone thing, but it's not necessarily just a hormone thing, is this?

There's so much more to it.

Okay.

What what's the problem here?

What would lead to, like, the hair falling out?

So the primary problem is a little bit too much of the male hormone called testosterone.

Yeah.

And so when women have a little bit too much testosterone, they get some of the effects of that.

So it makes periods not happen once a month.

And then they can get acne.

If you think boys tend to have worse acne than girls, they can get facial hair, grow beards and then the hair loss and in particular the hair loss that Grace had, is right in the middle of the head, just like a man goes bald.

Oh, and so those are the classic physical symptoms of a high testosterone.

And the bloodwork that needs to be tested is testosterone.

So thyroid and insulin could potentially contribute, but they're not going to make the diagnosis.

So if the right labs aren't done then you can't get the diagnosis.

I read one like 70% of women aren't diagnosed for this.

That's what we estimate.

This must be frustrating because people are not understanding you.

Right.

And then that affects your your mental, your psyche.

How how difficult has it been to live with PMS, PMO until you've kind of figured out what you're dealing with?

Totally.

I mean, I had a hard time relating to my friends.

I had a hard time being understood by my family.

I had a hard time understanding myself.

I would go into rooms where I would be like, I think that I have this, I've been googling and I think that I have this, and everybody would just tell me, well, you don't have this under over, so you can't have that.

And then finally, I was 25 and a nurse practitioner tested my testosterone.

So that's what if if somebody is watching this and things.

I might have that.

My child might have that.

You need to ask your doctor to be tested for testosterone a blood test.

The, the best place to get the information is actually from an app called ask PMS and you can do it on a computer through the internet.

Or you can download an app.

And the information in these apps and these apps were built by the individuals at Monash University.

And Monash is the group that led this name change.

Okay.

So as part of preparing to put the name change out, they really wanted to make sure that people can start googling and get the correct and accurate information.

So the Monash Resources ask PCOS, ask process are the best places to get the correct and accurate information.

And within that app, it helps you come up with a list of questions to ask your doctor that's helpful and identifies symptoms that are consistent with PMS, so that it really prepares the patient to have an informed conversation with the physician, and then they can say, well, this isn't something random that I googled.

This is actually put out by the group that helps lead the change for the name change.

Okay, so let's say you get a diagnosis after you've done that research, you've gone to the doctor.

What can you do to help with treatment.

So the most important thing is one to protect the uterus.

And so if we don't have periods women don't have periods on a regular basis.

If they're not taking any hormones, any birth control or something like that.

So if we're shutting down your periods, that's fine.

Okay.

By we I mean doctors.

If doctors are shutting down your periods for something else, that's fine.

Okay.

If your body is not having periods on its own, the lining of the uterus grows and grows and grows.

There's not a period.

It doesn't come out.

And things that grow and grow and grow can turn into cancer.

And so the rate of endometrial, that's the lining of the uterus, the rate of endometrial cancer in women with PMS is 6 to 8 times higher, with an average age of diagnosis around 30.

Wow.

And so as a pediatrician, this is why it's so important to make these early diagnoses so that we can help keep the uterus healthy.

So in my practice, number one, we have the opportunity to prevent cancer.

So let's do that.

Number two is whatever the patient wants.

So our guidelines specifically state that treatment for PMS should be patient oriented.

Okay.

So if they want a period every month then we do something to give them a period every month.

If they don't want a beard then we figure out something to help with facial hair.

If they want to lose weight then we help support them with that.

So that is really the order okay.

Now to reduce metabolic risk we have to reduce insulin.

So what insulin is is insulin is a hormone that is released when we eat food and in particular sugar.

And in some women when insulin levels go high, it confuses the ovary and makes testosterone.

How this has been coming out in a very unhelpful way is go lose weight, take the birth control pills and come back when you want to get pregnant.

That's not the message that the message needs to be.

We need to lower your insulin.

Yeah.

So things that lower insulin, less sugar, no liquid calories.

Activity makes insulin work better.

So when insulin works better, we have less insulin.

Good sleep.

Seven hours of sleep makes insulin work better.

If you're snoring, you need to fix it.

If we're very stressed during the day that makes cortisol high.

Cortisol makes insulin not work.

So this is the poly endocrine.

Okay.

To sustain insulin cortisol they all go together.

So that is the message is lowering the insulin not not weight loss.

And go do it on your own.

Yeah but grace does lift.

She works out.

So why she still struggled with the weight.

Right.

So there it needs to be some kind of medication.

Grace, do you take medication to help with this?

I am taking a dope one.

Okay, so that's helping.

How does GLP ones help with PMS?

So in our research, it is not the medication per se.

Okay.

It is, the fact that when you lose weight, insulin works better.

And when insulin works better, our insulin comes.

Down.

Oh, interesting.

Okay.

Okay.

So the medications work very similarly.

It doesn't matter how you improve, how insulin works and how you lower the insulin.

That's the biggest key.

And everybody's body is different.

So sometimes we can use a diabetes drug called metformin.

It makes insulin work better.

The insulin comes down.

So some women take that medication don't change their weight at all and their periods come back.

Do they.

Does does grace need to be on this or other patients of yours through life, through through menopause forever?

We don't know.

Especially with GLP ones okay.

We don't have the data on GLP ones.

What we know with our current medications is if you stop them, the weight will come back.

So certainly it's worked to get her body to a place where her insulin is low enough that it's not affecting her ovary.

Good, good.

Do we need to do a long term?

I'm hoping we have something that works a little bit better.

And is easier to take.

But for the meantime, you're doing great.

Your hair is so thick, I can't imagine, like, being.

And your your complexion is flawless.

So things are good.

Things are better.

Yeah.

It's definitely been life changing.

I'm curious what happens long term.

I'm willing to be here and learn.

Compared to where you were ten years ago, to where you are now.

How would you describe Grace, then, to Grace now?

I don't know if I would recognize myself, but I know that little me is proud of me now.

No.

Was it just her?

I mean, so hard.

Anyhow, being a teenager must have been really hard.

It was hard.

But it was also all the things that led me to where I am today.

And I'm grateful for this experience.

I'm grateful to be giving back in a way that prevents other 11 year olds from going through what I did for 14 years.

So good.

So 14 years is like how even how your journey 14 years is the length of your journey to get this name change that you've been trying to get the the focus more on the metabolism and not the ovaries for 14 years.

Well, so yes, 2012, we had a big meeting at the NIH in Washington, and I was at that meeting and there was a big discussion that there is so much more to this condition than just the ovaries.

And so kind of went back and forth between medical professionals, and we couldn't quite sort it out.

And then the patient said, stop fighting.

And in particular, the patient organization Verity in England.

And then we've got another patient organization in the United States.

PCOS challenge at PCOS awareness Association.

So really, the patient said, stop messing around and just help us.

So, what's really unique about this name change process is that patients have been involved in every step of the way, probably more so than any other medical name change process.

And you actually testified at National Institutes of Health, NIH about this.

Tell me.

About that.

Yes, it was interesting.

It was so wonderful to be able to thank them for their funding.

And it was really cool to get an insight into what research in our country is like.

At the same time, I was being asked like, well, what?

What would you have asked if you if you knew more like, what could you have asked?

And I was like, well, if I knew to ask tells me to Sasha.

And that's what I would have asked.

But at the time that wasn't available and all I had was Google.

I just knew, oh, my hair's falling out.

I kind of look like this picture, and I don't have a regular period.

So it was really interesting to see how.

Now I read the name and like, oh, that's what I have.

That's what I have.

Okay.

What was it like when you finally met Doctor Cree and you connected and you got to be a part of this study and that somebody understood what you were going through?

It was incredibly validating.

It was also not just that somebody understood, but somebody wanted to listen.

And somebody could teach me, what I didn't know and how to best care for my body.

I feel like this is a very word of mouth saying I only learned about it to a friend, and I'm like, why do I not know about this?

I would imagine that you speak a lot about this to your age group of friends too.

Do you find it's common or other people are like, oh.

I have a couple friends with a diagnosis of PMS.

Okay.

We actually all look very different.

And I think that has been something that, has proven the syndrome to me.

And really seeing the ways that it affects everybody and in different ways.

Okay.

But through that, though, my circle of women has been incredible.

I mean, all through the study that you did with Doctor Cree, and even now, I've never once done my medication alone.

I've never, experienced any side effects without a support group.

I have cheerleaders who watch all the things and read all the things, and, it's really incredible to see how the conversation really matters.

The talk is the best medicine.

In some cases, when you nod your head where everyone looks different.

What does that mean to not everyone is having acne or weight gain or.

Exactly.

And that's really why we needed the name to not just be focused on the ovary.

So some people start really struggling with weight first and then their periods get irregular.

Some people really start struggling with the acne and the extra hair first.

And their periods are still once a month and then they become abnormal.

So because there's so many different aspects to this condition, it it can present very differently.

So we can have people in a very large body size that don't have any metabolic problems.

And really the thing to know is that the metabolic problems.

So type two diabetes, high blood pressure, high cholesterol, extra fat in the liver, these happen at any body size in this condition, which is why the entire name of the condition has to change.

And so you can't look at somebody and say well you have this body size.

It's just a period problem.

We don't need to do anything about it.

Part of the name change is all these women are at risk for these metabolic conditions, and they all need to be tested for metabolic conditions.

And so hopefully by putting that metabolic in the name, they will be screened and then able to be treated for these conditions as they develop.

So whereas this has been tough to hear your story in that so many other graces are out there.

Yes.

It's also hopeful that you all are talking about it, this name change.

You've been talking to lot, talking with pediatricians, raising awareness.

So are you hopeful?

Like what?

How are you feeling at this moment?

Both of you?

Oh, I'm.

I'm thrilled and I'm excited.

And I'm hopeful.

Like you said, all the nerves are gone, and the curiosity is just overwhelming.

Okay.

I want you, doctor Cree.

I'm really optimistic.

I run a 19 center, consortium of pediatric providers who take care of girls with PMS, and we're not doing great.

And so I see this name change and all the discussion around it as a positive to really push our education, not only in our care providers, but also for our patients to come and come prepared with, you know, an app and specific questions and say, hey, listen to me.

Good.

Excellent.

Both of you, thank you so much for all that you've done over 14 years and for all that you've overcome over 14 years, right.

All right.

Thank you.