Sex After Cancer: Survivorship and Intimacy

Sex After Cancer: Survivorship and Intimacy

After treatment for cancer, it’s not uncommon to experience vaginal dryness or vaginal atrophy, incontinence, menopause symptoms, and significant hormonal and emotional changes. With a genetic cancer predisposition condition like Li-Fraumeni syndrome, we see a preponderance of ER positive, PR positive, HER2 positive breast cancer. After surgery and chemotherapy, and possibly radiation, our oncologists prescribe hormone suppressors like Tamoxifen - and with all of this, our sex lives can really suffer. Intimacy becomes difficult as sex becomes painful, if not impossible.

Jenna Perkins is a Women's Health Care Nurse Practitioner (WHNP-BC) from DiscovHER Health, offering Healthcare, Education, and Resources for HER. In this interview, Jenna provides hope for our sexual health and well-being as she discusses vaginal hormones and practical solutions including non-hormonal vaginal rejuvenation and other treatments. Learn more about Jenna, her services, and her Tame the Taboo podcast at

Watch the interview with Jenna Perkins, WHNP-BC from DiscovHer Health

Andi: All right, everybody. Welcome to the S Word, Sex After Cancer. This is all about survivorship and intimacy with Jenna Perkins. She is a women's healthcare nurse practitioner from DiscovHer Health, offering healthcare, education and resources for her. That would be us. Among other things, Jenna is going to talk about vaginal hormones and cancer, non-hormonal treatments like vaginal rejuvenation. And of course, there will be time for a Q&A. So Jenna, welcome. Thank you so much for taking the time and being willing to have this conversation with us today at Living LFS.

Jenna: Yeah. I'm so excited to know that you all exist as an organization and as a resource for clients. And I'm very, very honored to be here tonight. And so I'm excited to talk about sex, it’s what I love to do. And this is going to be a good conversation, I think.

Andi: Excellent. So why don't we get started with- tell me some of the things that when people come to you for your services, you know, during cancer, after cancer, what are the problems that they're coming to you with?

Jenna: Yeah, so cancer just rocks your world, right? When you get a diagnosis, everything then is kind of covered in the C word. And so you have a different lens and outlook on life. And that definitely is going to affect intimacy, right? And usually when we are thinking about treatment and cancer, what we want to do is get you to be able to survive, right? Your oncologist wants you to live, but we don't talk much about how you can actually thrive. And so when you are just stuck in survival mode and you can't really ever get out of that, then it's hard to be intimate again. And on top of that, all of the physical changes that occur with some of these treatments, then you have a recipe for, you know, a sexless life. And if you want to have intercourse, it should be an option for you, you know?

Andi: So, and explain to me, cause you said the word ‘intercourse’, which is a very specific type of sex, but let's talk about all the different types of sex and what- I mean, because when it comes to cancer, there's the physical part of it, obviously. And there's also the emotional part of how that changes your relationship with sex.

Jenn: Mmmm. Definitely. Yeah. So I'd love that you picked up on that. So sex is not just penis and vagina intercourse, right? Sex is really about connection. It's about intimacy. We are creatures that we need touch. We need physical touch and without it, then we can literally become sick. And so, if you are not able to tolerate, intercourse, right? Penis and vagina intercourse as we think about it, then oftentimes we will completely shut down from all levels of intimacy. Because if you- if your brain is thinking, okay, well if I even get aroused a little bit, it's going to lead to that thing that hurts so bad, then that's gonna shut down your desire to be intimate at all. And so the world of sex completely changes when that one piece of it is kind of shut off. And this is not just a conversation for like cis het people, right? Other folks like penetrative play too, and so the same thing kind of occurs. If you are cutting off one part of sexuality and sex, then the brain can kind of think, okay, anything with intimacy, anything sexual or sexy is going to lead to something that is uncomfortable. And so I don't want to do any of that.

Andi: So tell me how, when people come to you, what do they want help with? And what are you able to provide?

Jenna: Yes. So we can definitely help with that thriving piece of it. Right. So your oncologist is like, okay, I got you. You are alive, you know, and they don't have much time to dedicate to much more than that because they are dealing with other people who are trying to get the result that you've gotten. Right. And so when folks come to me, they tend to be in a good spot as far as like with their cancer and they want education. They want to understand their bodies. They want to know has my vulva changed? And if it has changed, like, what does that mean for me and for my sex life? And so we always start there with just a basic understanding of what normal anatomy is. And I love to give a mirror so that you can understand like what you look like today. And that can be great, especially if you have a woman who is having painful intercourse or vaginal dryness or recurring UTIs or anything affecting the pelvis and the pelvic organs. If you can show, look how red it is down there. No wonder it hurts every time you have sex or every time you pee or every time you wipe too hard or wear a swimsuit for too long, you know. And so that can really empower patients to say, I'm no longer being gaslit. You know, I'm no longer going to accept that this is the way that I have to live because now I can see it I can look, you know, the boogeyman in his face. So people come to me seeking education. And then of course, after the education, we need to start treating you. Right? So how do we get this vulva vaginal tissue to not be what we call atrophied, where it becomes very thin, very fragile, tears easily, bleeds easily.

Andi: That's actually a question I've got. So let's talk about, because in most cases, you know, women are coming off of chemotherapy or, you know, whatever the treatment may be, what kind of things does that- do those treatments do to women’s tissues? What changes through the course of cancer treatment?

Jenna: Yeah. So I like to back it up and think about like how we are physically when we were first born, you know? So I, when you look at a newborn baby's bottom, a baby girl, it looks kind of painful, right? It's like red and you're like, it's all one thing like, where are the pieces? Where are the labia? There's no clitoris here. And that is a vulva off of estrogen, right? She has not hit puberty. She does not have the hormones that are circulating that are really going to differentiate that tissue and make that tissue what it optimally functions as. And so when we go through puberty, what happens is estrogen, progesterone, testosterone, all of these hormones tell the vulvar tissue to plump up, to become two sets of labia, where you have two layers of protection protecting that opening. You have a clitoris, which is, I call it the joystick, right? The pleasure zone. And that is a vulva that is on hormones. And so it becomes bigger, it becomes more pleasurable, less painful, less prone to infections too. And so when we are treating different types of cancers where we can sometimes shut down the hormone production, and this happens very rapidly, right? Like if you're on tamoxifen, it's like, you know, one day you have hormones and the next day everything is shut down. And so-

Andi: You are literally speaking my language. That is exactly what happened to me. I was put on tamoxifen and I just became a whole different person. So not to get off topic, but it really, it changes who you are, you know, personality wise, not just physically.

Jenna: Yeah, everything, it changes- hormones are nothing but messengers, right? So they tell the body, the entire body, how to function. And so that's why in the perimenopause and menopausal phase, you start to look much older than you used to look. Your vision goes, you got to use readers all of a sudden, your hair starts to thin and fall out, you get wrinkles on your face. And so the vulva vaginal tissue is not immune to that because these hormones, these messengers that are telling all every part of your body, how to act, we lose that, right? And so the vulva vaginal tissue overnight, sometimes, especially if you have like a radical hysterectomy, you literally no longer have ovaries that are producing estrogen, producing testosterone, that factory gets shut down and, you know, things just go haywire, right? And so you can start to go back to looking like that newborn baby, right? So you start to lose the labia. So your lips start to thin. Your clitoris gets very small. The vaginal opening gets very red. It tears easily. It becomes very, very narrow to the point that sometimes you can't fit anything in there. Not a speculum, not a finger, definitely not a penis. And so sex becomes sometimes impossible. And that is a vulva off of hormones.

Andi: Okay, so I mean, that all sounds terrifying and painful and like life changing in a bad way. So when people are coming to you, they're literally and physically and spiritually hurting.

Jenna: Mmmm. Yeah. I like that you add spiritually in that too, because it definitely is a spiritual experience. And the worst part about it is that there are not lots of spaces like your organization, like Living LFS. There are not lots of places to talk about these things, you know, and when you want to talk to your oncologist about it, like, hey, my vagina is now dry. They're like, but are you alive?

Andi: Yeah, right. Yeah, exactly. Exactly. Exactly.

Jenna: Okay, good luck. You got a dry vagina, but at least you got life, you know, so then it's like, okay, well, I need a space where I can go to talk about this next step. And so that's really what I created at DiscovHer Health. Yeah.

Andi: So, and one of the things I was going to mention is that for those of us with LFS, you know, with for women, the preponderance of people have breast cancer with LFS and the preponderance of them are hormone positive breast cancers. So in almost all of our cases, not necessarily completely all, but in many, many of our cases, we are put on tamoxifen or whatever the hormone suppressor is, or, you know, the treatments are for us is do not have any kind of hormones from this point forward. So when that is the case, when your oncologist tells you, that's it, you're done. No more hormones. What can we do about that?

Jenna: Well, the first step is advocating for yourself and really asking the oncologist, have you looked at the data? You know, have you looked at the research and really looked into what hormone replacement therapy, both systemically, where we're giving your whole body all the hormones that you're missing, and local. What the true effect is on breast cancer or any type of cancer. Right? So, you know, there are plenty of oncologists who aren't necessarily up to date on the research and don't know that you can safely have hormone replacement therapy, even though you've had cancer. Right.

Andi: Really? This is news to me.

Jenna: Yeah. So it really is a conversation that you need to have with your oncologist. Obviously they are the experts. They know your type of cancer, but I will say that most oncologists that I work with are on board with you at least using local vaginal estrogen, which is different. So we're not giving you hormone replacement systemically to replace the hormones that you were making before. But we are really targeting the genital urinary tissue. And so when we say genital urinary, so we mean the genitalia. So the vulva, which is the outside, everything that we can see, the vagina, and then also the urinary system. So the bladder is highly dependent on those hormones too. And so oftentimes people will have overactive bladder, incontinence, recurring UTIs, because the opening to the bladder, which is the urethrum, is dependent on the hormones that you've now shut down, right?

Andi: So that's all tied in together. So if you have to pee a whole bunch, it may be because you don't have enough estrogen?

Jenna: Exactly.

Andi: Wow. And so can local- when you say local hormones, is that literally topical?

Jenna: Literally topical. So it's FDA approved for the treatment of genital urinary syndrome of menopause. And so thinking about menopause, what we've done is we've gone through puberty and now those hormones are starting to shut back down, right? Cause the universe is just like, you're done here. You're not making babies anymore. You don't need these hormones. Right. And so you start to again, lose the attributes of the vulva vaginal tissue, those protective attributes that starts to go away. So you start to look more like that, you know, newborn baby where the vulva vaginal tissue is raw and irritated and red and narrow. And so there is a magic bullet that has been FDA approved since the 70s. You put a little cream on your finger, a little pea sized amount, and you rub it right at the opening into the vagina, which is called the vulvar vestibule. And vestibule is a fancy word for opening, just like in a church. You got a vestibule. And so you can put it there because the bladder is going to uptake some, the urethra is going to uptake some, the vagina, the vulva, everything gets treated, but we won't be giving your blood levels an increase in estrogen. And so most oncologists are usually on board with using local vaginal estrogen if they've looked at the research. But again, there are some cancers where it's like, absolutely not. You can't even use this local hormones, you know? So that's definitely a conversation between you, me, and your oncologist when we talk about like your specific case. But like I said, most oncologists are up to date on the research and they're fine with using the local vaginal estrogen.

Andi: So when you say you, me, and your oncologist- so when somebody comes to you and wants to become a client, do you get involved with their oncologist with their treatment that you're part of the healthcare team then?

Jenna: Part of the team. Yep. So if you want to use local vaginal estrogens, if you're like, I heard Jenna talking about this magic bullet, like I need this cream in my life because I'm sick of peeing my pants, sick of running to the bathroom. I want to have intercourse. I don't want my vagina to shrivel up. Right. Then you. can make an appointment with me. And then we talk about your risk, right? So we look at what type of cancers you had. If you had an estrogen positive cancer, I want your oncologist on board. Right. So that's, so what I would typically do is send you back to the oncologist with our plan of care and then have them say, yay or nay. Usually they say yay and then we move forward. If for some reason you yourself are afraid of hormones or your oncologist is like, absolutely not, we're not doing that. Then we talk about alternative treatments that can help that tissue to not be so uncomfortable.

Andi: What would- what kind of alternative treatments are there?

Jenna: So there are a bunch of different types of treatments on the market right now. All of them work with the idea of essentially creating more blood flow to the area. So you think about blood, you think about oxygen, you think about lack of blood flow, you think about lack of oxygen, and so that will cause tissue death in any part of the body, right? And so what things that we can do would be like, if you can still have an orgasm, we want you to have a daily orgasm because we want you to have blood flow in that area, right? If you can tolerate manual massage, something like pelvic floor physical therapy, or using a little dilator to go inside the vaginal tissue will promote blood flow and also keep the stretch of the tissue. And so that's something that I oftentimes will recommend as people are going through treatment where, you know, most people will not- if you're actively getting treatment, use any sort of hormones, but we can still have orgasms. We can still promote the flexibility in the tissue and maintain the openness of the vaginal opening through treatment. The other thing- Oh, sorry.

Andi: No, go ahead. The other thing-

Jenna: The other thing that we do is different technology based lasers. And so there are a few different ones on the market. I use a radio frequency energy laser. And what it does is we use radio frequency all over the body. Like you use it on your face. If you are familiar with like Morpheus or Forma, these are like the fancy lasers that the celebrities use to help prevent wrinkles.

Andi: Oh, really? Oh, interesting.

Jenna: And the idea is that you use this energy and it tricks the body into thinking that damage to the tissue has occurred. So it sends all of the growth factors into the area. And so we can use this energy, it's a little wand that goes in the vagina and the same way the treatment goes on the face, it can treat thinning of the tissue by building collagen inside the vagina and on the vulva.

Andi: So if that works that way, could you also put the local cream, estrogen cream on your face to get rid of the wrinkles?

Jenna: You can. You can. There are some interesting studies coming out and there are some practices who are doing pretty innovative things like that. I prescribed it a few times for people. We do aesthetic procedures because it's when we talk about like this. The phases of life and the phases of womanhood, people are not coming to me for one thing, right? Like, if you're coming to me, you're coming because you have incontinence and pain and infections. And oh, by the way, I also have like wrinkles and, you know, dry, all these other things because hormones, as we know, affect the entire person, the entire body. So, yes, you can, and I've done it for a few clients before, and they've gotten good results and yeah, some pretty innovative research going on looking at topical estrogen for the face.

Andi: Switching gears back to the actual function of having sex, because it is such a, it's a mental thing. And so many of us, even before we get to cancer, there are so many hangups about sex just in general. So one of the things that, do you ever, is it ever as simple as saying you need to use lube?

Jenna: Yeah, it's usually not that simple when people are coming to see me because they tend to already gotten that advice from their providers. And then they go down the lube aisle and then they grab the first KY jelly they see and then they put it on their bottom and it burns like crazy. Because a lot of the ingredients in a lot of these lubricants are pretty nasty, honestly, you know, you got alcohol. Imagine putting alcohol on an open wound, like that hurts. So it's my recommendations, don't just stop at lubricants. Though I do recommend them and we sell them in our shop actually. And what we can do for your audience actually is give them a free guide that I've created to finding the right lubricant.

Andi: Oh, fantastic.

Jenna: So yeah, I'm happy to share that with you all and I have a bunch of free resources on my website. It's just But yeah it's starting with lube is a good starting point, right? But that's like putting lip gloss on a face that is like completely dry and cracking and like bleeding, you know, it's like, okay, that's nice. But like, we need to heal this. We got to get this better.

Andi: Yep. As we've talked about it's a whole body, mind, you know issue. So do you also address any of the psychological problems when it comes to sex, especially after cancer?

Jenna: Oh my god. Yes. So sex therapy is one of my, you know referrals of where I'm always sending people to connect with people to talk about sex and then just therapy in general, right? Like, especially with a cancer diagnosis, you might be a little bit depressed, right? Especially with a genetic disorder where you have other people in your family who might have this diagnosis, you definitely need a sounding board and you have to be mentally well in order to facilitate physical healing.

Andi: Do men come to you as well?

Jenna: I do see men. My brand is very gendered for her, right? But I do see men and because men have pelvis floors too, right? So they get tight. I was just going to say actually one of the things that happens is when we are in fight or flight, when we are stressed, when we are depressed, our body is going to start to respond. And so we can think about this and the fact that like, you might get a stress headache, right? Where you're like, Oh my God, I'm so stressed out. My head is hurting or like your shoulders rise and they start to meet your ears because you're so stressed out. And so that tension as a result of the state of your mental status, it causes physical manifestations in the body. And one of the things that happens is the pelvic floor becomes very, very tense when you are stressed out. Right? And so if the muscles that are in charge of birthing, of pooping, of peeing, of sexing, you know, if those muscles are so what we call hyper tonic, too tight, too much tone, then nothing's going to fit inside. If something does come inside, imagine walking around like this all day. And then somebody comes up and touches your shoulders, right? It's like, ow, that hurts. You know. You get knots in your neck, you can get knots in your pelvis. So you can really have lots and lots of tension down below as it relates to anxiety, depression, stress. And then also as a way to protect your body. If you have the changes of the genitalia that we were talking about with the lack of hormones, then your body goes into protection mode. And it's like, we're tense up here, you know, it's burning out there. It's painful out there. We're going to be tight in here and protect you. But that creates another source of pain that tension does.

Andi: Now is that- we're talking specifically about something that is you know, what's the word? Not like a permanent condition. This is something that happens, you know, with a specific event, stress related event, right? It isn’t the kind of thing that can happen like permanently, right?

Jenna: It can. It can. And so what can happen is instead of having like a constant migraine, right? You just start to, in your pelvis, I think of it like being a migraine in the pelvis, you start to have it lots of pain when things are typically innocuous, right? So you can have pain with sitting, pain with bike riding, pain with wiping. Right? So things that typically do not hurt can start to become painful all the time. And then we're dealing with chronic pelvic pain, which is something that we do see in the cancer survivors.

Andi: And so what is, what's the first step when that happens?

Jenna: The first step is recognizing it and getting an accurate diagnosis. And so again, it goes back to advocating for yourself. If you are having overactive bladder symptoms and you've tried a million medications and treatments and nobody's examined your pelvic floor, it's time to find a new provider. One who's going to say, okay, you know, I know all about tension or I'm familiar with it. I can test it and then I can give you a referral. And there are lots of really cool treatments for that tension, for that tightness. At DiscovHerHealth, we offer a form of red light therapy, which is really cool. And so red light therapy, it has been used all over the body for like muscle regeneration and skin. But it's really cool. I have a wand that goes in the vagina. It's called SoLá Pelvic Therapy. And so this wand delivers red light to those tight, painful pelvic floor muscles. And we do a treatment for 3 to 5 minutes, 3 times a week for 3weeks, and I call it my pelvic reset program so we can get those tight muscles to be not so tight in 3 weeks, or even less people start to feel better. So that's a really awesome treatment that is innovative and cutting edge not a lot of people have that, though. The traditional kind of gold standard for muscle relaxation is pelvic floor physical therapy. So there are actual trained physical therapists, or orthopedic therapist, OTs, PTs and OTs.

Andi: Occupational therapists.

Jenna: That’s the word. Thank you.

Andi: Is that it? Okay.

Jenna: Yes. Yes. So PTs and OTs who are specifically trained in how to maintain function of the pelvic floor so they can help you with this muscle relaxation.

Andi: Okay, so stepping back even further from that, like I said, because of the fact that sex is so much of a mental thing and we have so many hangups about it before you even get to cancer, for the people who are too embarrassed or too, I don't want to deal with this, or I can't think about this, or this is too heavy for me, what do you say to the people who might be watching this going, gosh, I wish I could get some help, but I'm too embarrassed to approach to do anything about this. I'm just going to deal with it.

Jenna: It won't go away on its own. It's only going to get worse. You only get older. You only lose more hormones, right? The muscles only get weaker and tighter. And so if you don't address it now, this is the youngest you'll ever be. This might be the healthiest you'll ever be. And so you owe it to yourself to add a little bit of pleasure to the mix. Pleasure is waiting for you and every breath. It is something that I think that God has given us as a gift to really enjoy life. And so we shouldn't be stuck in this survivor mode. What are you surviving for? You know, you want to be connected with your partner. You want to be connected with yourself. And so you owe it to yourself to invest in yourself and there are options. So, if you have talked to other providers, and you haven't been able to make headway, just know and understand that we're not all created equal when it comes to sexual health and treating these conditions, but really advocate for yourself and find someone who knows the work and who has a track record of being able to help you because we're out here and we want to help you.

Andi: Fantastic. So how did you get into this particular specialty? What was the impetus for that?

Jenna: Yeah, I kind of felt called, honestly, I always wanted to serve the most vulnerable among us. And when I was in undergrad, I remember there was a lady and her family, we were meeting together. Because her family had her at a outpatient facility where she would come and visit every day, but they were really struggling with taking care of her at night because she was totally incontinent, you know. And I remember feeling so bad for this lady because she was still with it and, you know, physically fine. But her family was like, we can't take care of her anymore. So, that just felt like, okay, I want to do something with this population. So the opportunity came up for me to apply to jobs in urology and I was like, okay, I like women's health. I'm a feminist. I love to care for women and I can care for the most women, most vulnerable women among us. So let's do it.

Andi: So how long ago was that? When did this all start?

Jenna: I started working as a nurse practitioner in 2014 when I graduated. So almost a decade now, which is insane.

Andi: Congratulations.

Jenna: Thank you. I quickly realized that, you know, the same people who have incontinence have vaginal dryness, painful intercourse, and complex medical mysteries, quote unquote. And so I was like, Oh, I get to be a detective and all this stuff.

Andi: Nice. Very cool. So tell me about the podcast. I saw when I was doing a little bit of research, I saw that you actually have your own podcast. Tell us about it.

Jenna: Yeah, so I have a podcast. It's called Tame The Taboo. And essentially it's just conversations that I'm having with people that are my friends or that I'm networking with. And what we do is talk about the things that are usually kind of in the hidden, right? So we talk about sex. Of course, we talk about incontinence, we talk about business. I am building a business. I’m a year and a half into my entrepreneurship journey. And so that is something that people don't talk about, especially in healthcare. Healthcare providers don't like to talk about money. And so it's just a reflection of where I am in my life and my life's work and taking you along that ride.

Andi: Oh, fantastic. Excellent. And you mentioned that you have a couple of programs, so there's the there's the local hormones. So let's talk about how people can get connected to the programs that you have to offer.

Jenna: Yeah, so, we have the pelvic reset program, which includes the red light therapy that we talked about. And then we have the total regeneration program too, where essentially you would figure out what phase of life you're in. Are you pre-menopause? Are you post menopause, perimenopause? And then we have cutting edge technology available to help you from head to toe. Which is really cool. So we can help you with the esthetics. We can help you with skin. We can help you if you are a candidate for hormone replacement therapy, really everything that you might need is in this program. And so the way that you would go about working with me is we would do an hour long consult so that we can get your medical history understanding, and that can be either virtual or in person if you are in the DC, Maryland or Virginia. And so we spend an hour and then we kind of place you and say, like, this is the right program for you. And these are our next steps.

Andi: Fantastic. And to be able to access all of that, is the website, right?

Jenna: That's it, yes. Yeah. Yep. I love the way you say that.

Andi: Well, it's very important because it's spelled a specific way, so yes- it's like Discover, but there's that H in there for her.

Jenna: For her, yep. So you know, it's for you. Yep.

Andi: Fantastic. Is there anything that we haven't covered that you would like to talk about today?

Jenna: Yeah. I just want to reiterate the fact that like joy is open to you whenever you are willing and brave enough to go after it. And you survived cancer, you are surviving cancer. So you can do hard things, including taking care of yourself.

Andi: Fantastic. Jenna Perkins from DiscoverHer Health. Thank you so much for the time today.

Jenna: Yes. Thank you so much for having me.


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