Genitourinary Syndrome of Menopause

Welcome to The Breastcancer.org Podcast, the podcast that brings you the latest information on breast cancer research, treatments, side effects, and survivorship issues through expert interviews, as well as personal stories from people affected by breast cancer. Here’s your host, Breastcancer.org senior editor Jamie DePolo.

Jamie DePolo: Hello. Thanks for listening. Our guest is Dr. Kristin Rojas, a breast cancer surgeon at the Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine. She is also the founder of the Menopause, Urogenital, Sexual Health, and Intimacy Program, which is called the MUSIC program, at the Miller School of Medicine, and is a national leader in treating sexual dysfunction in women receiving cancer treatment. 

She joins us to talk about genitourinary syndrome of menopause, or GSM, which is a long name for the constellation of symptoms that the decrease in estrogen that comes with menopause can cause.

Dr. Rojas, welcome to the podcast. It’s so great to talk to you again, especially about this really important topic.

Dr. Kristin Rojas: Thank you, Jamie. I’m thrilled to be here. I had so much fun recording our last podcast at ASCO about some of these topics and managing symptoms for these patients, so thanks for having me.

Jamie DePolo: Great. So, as sort of as a jumping off point, in August of 2023, the New York Times ran what I thought was a great article called “The Unending Indignities of Vaginal Atrophy.” So, in a nutshell, it talked about how vaginal atrophy, besides being rather offensive, was misleading because it really focuses only on sex, and it doesn’t take into account all the other issues that menopause can possibly cause.

And genitourinary syndrome of menopause is now the preferred term, as far as I understand, but not a lot of people or doctors or research studies really use it. They're still using vaginal atrophy. So I really…I wanted to talk to you about this since, you know, this is kind of where you focus. So, why won’t vaginal atrophy go away? I mean, we don’t, or at least I don’t, you don’t really hear penile atrophy very often. It just…it just seems so, I don’t know, upsetting and offensive. So why, why do people keep using it?

Dr. Kristin Rojas: Yeah. Well, to summarize, society would not allow us to even use the term penile…

Jamie DePolo: (Laughs).

Dr. Kristin Rojas: Because of…yeah. I want to start off by saying that the New York Times is really killing it this year. They put out this article, which is just really bringing awareness to a lot of the language that we use to talk about some of these taboo topics, and then, there was also a recent article from, where a writer wrote about her personal experience with menopause that I think shed a lot of light on these.

You know, as the director of the Women’s Sexual Health After Cancer Program, also called MUSIC at Sylvester Comprehensive Cancer Center in Miami, I focus on treating women with menopausal symptoms who are undergoing treatment for any type of cancer. However, when I started this program several years ago, it was challenging because, as a society, we weren’t addressing menopause in patients without cancer, so how are we supposed to draw awareness to a topic of…that, hey, by the way, now, we’re putting these young female and cancer patients into menopause, and we’re exacerbating menopausal symptoms in women that are after menopause. So you're right, the term hasn’t gone away. It’s lingering, and it’s so ugly, patients absolutely hate it. I’m not sure they love GSM more, but…

Jamie DePolo: (Laughs).

Dr. Kristin Rojas: One of the (laughs) but you're…I do think an important point is that it does highlight the constellation of symptoms that include vaginal dryness, burning, stinging, also symptoms with the bladder, pelvic floor muscle dysfunction, because a lot of the patients that I treat in the Sexual Health After Cancer Program are not sexually active, and they actually, some of them don’t even care to be sexually active. We are treating a lot of these symptoms that interfere with their everyday life.

I thought the article was interesting in that it drew a correlation with the change of language regard…regarding erectile dysfunction and how in…it was it used to be called impotence, and in 1992, they decided to call it something else, and where are we now, like 30 years later or 20 years later, we've decided to finally catch up and change the language around how we talk about the vagina and vaginal symptoms. 

Jamie DePolo: Yeah, and, and, the thing that I thought was, was very interesting, too, that not a lot of people think about like, you know, because you hear vaginal atrophy, it’s immediate sex, it goes right to sex, like that must be the problem. But the decrease in estrogen and like the thinning of the vaginal tissues, besides sex, it can affect like riding in a car for a long time, putting your jeans on, you know, wiping after you go to the bathroom, and, and it’s so…it seems like it’s so focused on sex that I’m not sure if somebody who’s going through or having those issues like makes the connection like, oh, this is because of menopause, this is…you know, rather than it’s something else. Do you see that?

Dr. Kristin Rojas: Yes, definitely. Part of the…a big portion of the initial visit in the MUSIC Sexual Health After Cancer Program actually is focused on patient education because a lot of times patients start to experience these symptoms along with hot flashes and the other side effects of therapies we give them, and they actually don’t know why they're happening. And as…like we haven’t done a great job preparing them for that, and not any fault of our oncology providers, but there’s a lot to discuss when we see patients and we’re talking to them about chemo and staging, and prognosis, et cetera, and so, that’s one of the benefits of having this program where we only talk about these topics. But we actually did kind of revamp our educational initiative and create these pamphlets for patients in both English and Spanish. First paragraph is defining genitourinary syndrome of menopause. This is what it includes, and I explain to patients that these are all related to the way your body sees estrogen, whether we make estrogen really low and estrogen comes from the ovaries or whether we block the effects of estrogen in certain places. 

I explain that menopause is a process of the…the ovaries slowly starting to make less and less estrogen, which is usually a gradual process, so usually, the process of menopause is several years. When we put patients into menopause for treatment, either on purpose or inadvertently, it’s usually a very abrupt issue, an abrupt consequence, and patients can be extremely symptomatic, at that time. So I think explaining it, I’ve seen patient’s face kind of light up just knowing that now, oh, there’s an explanation. Number one, it’s not in my head because believe it or not people are still told that, and number two, that there’s an actually biologic phenomenon for some of these symptoms, and I think it’s also been helpful to include partners when there are partners in this discussion because it helps educate them, too.

Jamie DePolo: Right. Now, we talked about, obviously, there’s the sex symptoms, you know, putting on jeans. Are there other symptoms that, you know, we should talk about here just so everyone’s aware, other symptoms related to this? 

Dr. Kristin Rojas: Definitely, and to piggyback on that, like (laughs), patients will tell me, oh, I can’t go to Peloton class or you know…

Jamie DePolo: Right. 

Dr. Kristin Rojas: ...after I swim, it’s…, I have this irritation, and so I like to think about it in terms of what the patient’s actually feeling when I describe it. So, the most common symptoms of genitourinary syndrome of menopause are vaginal dryness, but vaginal irritation and stinging, painful sex, but also, recurrent bladder infections or urinary tract infections. The bladder is a neighbor to the vagina, but they're not the same thing, and so changes to that area can affect both of those organs. 

I also talk about how it can cause pelvic pain, you know, pelvic floor muscle dysfunction and spasm, issues…specifically issues with around sexual dysfunction but also everyday activities I think are really important to highlight.

Jamie DePolo: Okay, great. Now, we talked about the symptoms, I’m sure what most people who are listening want to know, okay, what are the treatments? What, what can I do for this? 

Dr. Kristin Rojas: Definitely. Well, what I’m going to explain now applies to women with a history of cancer and women without a history of cancer, so everyone, listen up.

We treat genitourinary syndrome of menopause with four easy steps in the MUSIC Sexual Health After Cancer Program. We are addressing the most common manifestations of GSM, which is vaginal dryness and painful sex, but along the way, we also improve the recurrent bladder infections and levator spasm, if that’s also a part of…part of the syndrome.

So, we start with number one, eliminate irritants. So, a lot of times, the mucosa, or the lining of the vagina, has become thin and sometimes irritated because patients don’t know, they just start to apply a lot of the over-the-counter products to the vagina. Things like, douches, even Vagisil bath balms, different soaps, different types of feminine hygiene products that there’s entire aisles in the supermarket dedicated to, but actually, most of them contain a lot of irritating products, specifically artificial fragrances and long named chemicals. 

I think we've talked about this before, but there are chemicals that are allowed in products that are…can be placed in the vagina in the United States that are linked to cancer and that are actually illegal in Europe. So I talk to patients first about really taking an inventory of everything that touches the vulva, which is the outside of the vagina, and the vagina, which is internal. That includes formaldehyde in your toilet paper, fragrances in the detergent you wash your underwear with, and really anything that touches that delicate area.

Step number two is moisturize. Just like some of us may have a multistep skincare routine at night, under-eye cream, we think about moisturizers for maintenance. So, a good starting point for patients, once we've eliminated those irritants, is a really non-irritating vaginal moisturizer, which can be non-hormonal.

My go-to for our patients is single ingredient organic coconut oil, which is a natural antimicrobial, antifungal, or a hyaluronic acid-containing vaginal moisturizer, which is actually the same compound that’s in a lot of our eye creams, lasts a long time, really holds moisture on the skin, and pick a product that’s non-irritating, doesn’t have any extra gimmicks. 

Third is lubricate. So, I tell patients moisturizers are for maintenance, lubricants are for sexual activity or anything being placed in the vagina, and so that includes dilators, sexual devices, the penis. We want to talk about silicone- and water-based lubricants. You want a product that’s slippery…super, super slippery, and I like to empower patients, you're going to be the one picking the lubricant. You are going to look at the ingredient list. You're going to make sure there’s no gimmicks. Silicone lubricants are really great for patients who aren’t dependent on condoms for STD or pregnancy protection. Water-based is good for patients who have issues with silicone, but we always kind of lean towards silicone because they last longer and can keep be hyperallergenic…hypoallergenic, and lastly is address the pelvic floor. 

So, this is for patients who are having a lot of what we call levator spasm or pain in those pelvic floor muscles, which is like an interwoven basket. This could manifest as worsening pain with sexual activity or placing anything in the vagina or things like leaking of urine with coughing and sneezing, issues with having bowel movements. And so, oftentimes, we will refer our patients to pelvic floor physical therapists, at that time.

Jamie DePolo: Okay, great. And what about, you may have touched on this and maybe it didn’t register with me, but if somebody is having like a lot of, urinary tract infections, is that…that usually medicine, then? 

Dr. Kristin Rojas: Yeah, that’s great. So, actually, by fixing some of the symptoms of genitourinary syndrome of menopause, we can oftentimes improve those recurrent bladder infections, especially if they're immediately after sexual activity. 

One thing I didn’t touch on was for patients who, where we improve their symptoms but they're still having those what we call post-coital UTIs, which means bladder infections after sex, we can give them a single dose, gentle antibiotic. They just take one pill after sexual activity that can decrease those UTIs, and that’s nitrofurantoin or Macrobid, and you just take one pill. It’s not the whole week of therapy. 

The other thing we didn’t talk about and what we have a lot of evidence to support, and really our next step when we’re talking about vaginal moisturization, is hormonal moisturizers. So, vaginal estrogen significantly reduces recurrent bladder infections, and people don’t realize this, but bladder infections can spread to your kidney. You can be admitted to the ICU, and so it’s really important that we take care of these recurrent infections that patients are having. The most effective treatment of which is low dose vaginal estrogen. We also use other types of low dose vaginal hormones such as vaginal DHEA. 

There’s a lot of controversy around vaginal hormones in patients with breast cancer, and I want to just reassure our audience that we think about this a lot, and we've done some different changes in how we manage this to really decrease the possibility of any absorption of these vaginal hormones. What we do is we give patients non-hormonal moisturizers first so that we can improve the dryness a little bit, and then, we’ll give back either a really, really low dose vaginal estrogen cream or a low dose vaginal DHEA, and we’ll do that like once or twice a week. 

This all started because the original research studies looking at vaginal hormones used doses four times higher, and they gave this to women every night for two weeks in a row, so of course, when we measured their blood levels of these hormones, they went up a little bit. Usually, it was short lived, but they would go up, so that started this idea that, hmm… are we doing something to increase the risk of recurrence in these patients? And we've had multiple long-term studies showing that that hasn’t been associated with the risk of recurrence. We have some good safety data showing that the estrogen levels in patient’s bodies don’t go up when we do this appropriately, and that’s low dose, infrequent dosing once…one to two times a week, but we can kind of adjust that dosing based on patient’s symptoms.

Jamie DePolo: That’s great, and, and that reminds me, I don’t know if you’ve seen this yet, there was just an article that came out yesterday in JAMA Oncology showing that women with a history of breast cancer who use vaginal estrogen did not have a higher risk of dying from breast cancer compared to women who didn’t use it. So that, I thought…you know, I know the other studies looked at recurrence, but I thought this was interesting because it was actually looking at breast cancer survival, so.

Dr. Kristin Rojas: Exactly, and I think that’s the important question, as we get better at treating cancer, the incidence of breast cancer is increasing. One in eight women are going to be diagnosed with breast cancer, and for some families, that risk is a lot higher, so we’re going to continue to see. We’re managing breast cancer now as if it’s a chronic illness, like it’s your high blood pressure. After we get through…you through the initial phase, this is going to be something we have to deal with, but it’s not going to be what we call breast cancer-specific mortality, so we want to get you back to your normal life so that this is something that, yes, you have to think about when you go to the doctor, but it’s not something that’s influencing you every day and something you're worried about dying from. And I think we’re really moving towards that, and research studies are starting to focus more on those as outcomes. 

This is really important because a study came out within the last year or two that was on a Danish group of patients, and a lot of people misinterpreted the data as showing that there was a connection between vaginal estrogen or vaginal hormones and breast cancer recurrence, but a lot of us experts in this, looking at research studies, looking at how these outcomes are…are documented, have determined that that analysis is not something that we hold a lot of water in when we’re talking about risk of recurrence for these patients. So I’m glad that these newer studies are coming out really focusing on the most important outcomes and kind of debunking this long-term myth.

Jamie DePolo: Yeah, that’s great. So, finally. Obviously, this is a sensitive, emotional topic for a lot of women, and they may be reluctant to bring it up with their doctor. So if somebody lives someplace outside of Miami where they cannot go to your clinic, how would suggest they approach this? You know, what…I, I know some women may have to sort of, you know, hype themselves to…to bring up the topic, but, but what…what…what tips do you have?

Dr. Kristin Rojas: Yeah, so even though our MUSIC program is in South Florida, we try to put a bunch of resources online so patients everywhere can reach them. One of those is on our MUSIC Instagram. It’s @music_sexaftercancer. We post a lot of this information. We also have a two-hour, free patient workshop in English and Spanish on the Sylvester Comprehensive Cancer Center YouTube, and then, there’s a lot of advocacy groups, like Breastcancer.org, Rethink Breast cancer, et cetera, that are really putting out a lot more information. So I would say look at those resources, go online, find some, well-known and trusted groups that are putting out this information, but second, bring it up to your doctor. 

It doesn’t matter if it’s your primary care doctor, your gynecologist, if you have a history of cancer, if you don’t have a history of canc. If you're experiencing these symptoms, bring it up to your doctor. Let’s make this normal conversation: “Hey, before you go, I would like to talk to you about I’m having some issues, sex is painful, do you have any suggestions for me?” Or, “I’m having these bladder infections since I started this medication, can you refer me to someone, do you have any resources, do you have any tips?” Even if, and I want to empower all of our patients to just…just do it. You don’t have anything to lose.

The other thing is like providers, oncologists, or otherwise, we’re all human, and if…even if you see your oncologist look kind of flustered when you bring it up, if five patients ask about it that day, they're going to go home and put together some resources for their patients, so even if you asked them three months ago and they didn’t really have anything for you, ask them again when you see them in three months because they might have something new because we’re talking about this more, patients are bringing it up, we have to address these symptoms, and it’s really the impetus on providers now is to…even if they can’t directly treat them, to be able to direct patients in the right way.

Jamie DePolo: Great. Dr. Rojas, thank you so much. This has been very, very helpful.

Dr. Kristin Rojas: Thank you so much, Jamie, for having me. Thank you to Breastcancer.org and make sure to check out our Instagram @music_sexaftercancer.

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