Finding help for sexual side effects, with Lyndsey Harper, MD

Sexual side effects are common among women getting breast cancer treatment, and often in the years beyond. Vaginal dryness, pain during intercourse, loss of desire, and changes in how you feel about your body can affect your relationship to sex. Getting help for sexual side effects can be especially tough because may people feel uncomfortable speaking openly about sex.

Lyndsey Harper, MD, a certified OB-GYN, started the Rosy app to help women find reliable, evidence-based information about decreased sexual desire and other issues around women’s sexual health. Living Beyond Breast Cancer CEO Jean Sachs, MSS, MLSP, spoke to Dr. Harper about the app, the obstacles women face when seeking help for sexual concerns, and what you can do to get better information and care.

Lyndsey Harper, MD, FACOG, IF

Founder and CEO, Rosy
Dr. Harper is an associate professor of OB-GYN for Texas A&M College of Medicine, a fellow of the American Congress of Obstetricians and Gynecologists, and a fellow of the International Society for the Study of Women's Sexual Health. Read more.

 

Jean A. Sachs, MSS, MLSP

Chief Executive Officer, Living Beyond Breast Cancer Jean began her work with LBBC in 1996 when she became the organization’s first executive director; she was named CEO in 2008. Jean brings a lifetime of women’s advocacy experience to her role as CEO. She lives LBBC’s mission everyday by speaking with newly diagnosed women about their needs and gaps in support. Read more.

Jean Sachs (00:00):

Hi everyone. This is Jean Sachs. I'm the CEO of Living Beyond Breast Cancer. And first and foremost, I hope you're all doing well and staying safe today.

We are talking with Dr. Lyndsey Harper. She is a board certified OB-GYN in Texas, and she also is a fellow of the International Society of the Study of Women's Sexual Health. In addition to her medical career she decided to create an app and she is the CEO of Rosy, and this is an app that is completely dedicated to connecting women to sexual health information. We're going to talk about the app and learn more about Dr. Harper's journey as to why she added this to her probably already busy medical career.

Welcome, Dr. Harper.

Lyndsey Harper (00:57):

Thank you. I'm so happy to be here. Thanks for having me, Jean.

Jean Sachs (01:01):

Of course. Let's just start and tell the viewers what led you to really focus on sexual health?

Lyndsey Harper (01:09):

You know, it was my patients. I felt pretty confident helping them with things that we're trained to do in residency and medical school — like pregnancy, surgical needs, menopause, contraception, sexually transmitted infections — but there was a huge gap in my ability to help them with sexual problems. And my patients would come in — you know, as we develop these long lasting relationships — and tell me things like, “Dr. Harper, I love my husband or partner, but I don't care if we ever have sex again.” Or they would have problems with painful intercourse, trouble with orgasms, and outside of this framework of endometriosis, fibroids, prolapse, didn't really know about sexual response, sexual dysfunction, and that's because I hadn't been trained.

In fact, it's not just my experience, but the experience of most OB-GYN that they do not get trained in women's sexual health. I think that we expect as a society, and probably as women, that OB-GYNs are the ones to go to for these problems, much like maybe a urologist is for a man, but in fact, that's not the case, and so women are left with these problems. Forty-three percent of women have some sexual problem or complaint, and very few of us are equipped to do [give them advice]. Once I realized that, and the discrepancy between the available sort of treatment for men and women, I got really mad, which is where all good ideas start, and decided to go full force and see what I could do in the field and for women that, that I was caring for.

Jean Sachs (02:46):

Well, first, thank you so much for listening to your patients. I think that is so important and also so happy that your patients actually felt comfortable enough to come to you and raise this issue. We certainly know it's a hard thing to talk about, and I know for the breast cancer community, breast cancer has such an impact on so many things, but absolutely on your intimacy and sexuality. And it’s often very hard to know who to talk to and how to bring it up.

Lyndsey Harper (03:15):

Absolutely. Well, I thank my patients for bringing it up to me because I wasn't doing a good job either. Only 17 percent of OB-GYNs even ask their patients about sexual health, which is an atrocity. So the fact that I wasn't asking, but they were still telling me, was such a gift to me and has really helped to push this forward, so I'm definitely on the same page as all of my patients, for sure. Yeah.

Jean Sachs (03:38):

That's great. And so you went on to do additional training, is that right?

Lyndsey Harper (03:41):

I did. Yeah. So I asked around I'm like, “Where does one even learn about these things?” And there were a couple of women OB-GYNs in this bigger group on Facebook that I was in. Most people had no idea, but a couple of them said, Oh, check out ISSWSH — and it stands for the International Society for the Study of Women's Sexual Health. They have a fall training program, and once you've attended so much training and demonstrated competency and contribution to the field, then you can become a fellow. And so over the course of a few years, I became a fellow.

Jean Sachs (04:13):

Is there a way for a patient to know if their gynecologist has that training or a way to identify someone?

Lyndsey Harper (04:22):

Yeah. So the ISSWSH website, which is isswsh.org has a list of members and you can search by city, so that's one way to find [someone].

What I'm trying to do on my side is get this information out in digestible bites, not only to patients, but also to providers. And so I go around and do grand rounds on the topic at different medical systems, just to say, “You know what? We don't have to shy away from this.” There's this idea in medicine that women's sexual health is too complicated or it's Pandora's box, right? And us as busy practitioners feel very crunched for time. And when that's doubled, that negative feeling is doubled by the lack of training, then we're really just never going to talk about it.

I feel like it’s part of my job to break it down and say, “If A then B and if C then D,” and make it very approachable. It's a baseline level of knowledge that's needed to encourage these providers to be the ones to initiate these conversations.

Jean Sachs (05:22):

Okay. That's great. When you think of sexual health what are you looking for? What do you think women should be trying to achieve?

Lyndsey Harper (05:32):

There's no goal, right? That's part of the answer is that it's not a destination but maybe more of a journey. I think that for me, the keys to healthy sexuality probably are two things.

Number one, the ability to communicate about sex. And that is true within so many circles, maybe amongst our friends, whom we trust; amongst our partners, with whom we're romantic; and specifically for me with our healthcare teams. That's a very good sign when you have the education and the language to be able to hold those conversations. That's a sign to me that you have some healthy sex habits going on.

Another thing is the ability to negotiate a problem. Say there's a discrepancy in desire in a couple, or say you're having pain, or say you're experiencing changes due to menopause or surgery. Whenever you come into contact with an issue, how able are we to negotiate those issues? And that goes back to that communication piece.

First has to come communication. And then we practice over time talking to those people in our ecosystems. And that is where we're able to find the answers to whatever's going to come up because it's not going to happen just once, but it's going to happen multiple times throughout our lives. And when we're able to navigate and negotiate those problems that's really what it's all about.

Jean Sachs (07:00):

I have been on your app and there is a lot of information and you can look at a lot of short videos, but just tell us maybe in a few sentences: What are you trying to achieve with the app? And how do people get it?

Lyndsey Harper (07:16):

Yeah. So for me, the most distressing part of these women who would share with me and my office is that they truly and deeply felt that they were the only ones. They thought they were a complete anomaly and they trusted me enough to tell me.

But what I would try to tell back to them is you're not the first person to ever tell me this. In fact, you're not the first person today to tell me this. These are actually very common things, but we receive signals from our society.

No one talks about this in the media, no one talks about this in medicine. So we get these signals that either (A) we're not allowed to talk about this or (B) it must not be a very big problem, right? If no one's talking about it, maybe it's just me.

Along with that lack of conversation comes isolation and shame, and that compounds the problem. So really what we're trying to do in the first place is start those conversations and tell women, these are really common problems. Just because nobody talks about it, that's our fault, not your fault, not the woman's fault who's experiencing these issues. So we have to, as women, say together, “This is absolutely unacceptable and we deserve better resources now.”

We're trying to start that conversation. And then another super important piece is bringing together the evidence-based resources into one spot where women can say, “Okay, I have a sexual question or problem. I know I need to go to Rosy and I can find whatever the next step is.”

Jean Sachs (08:47):

That's great because you can do it in private, and you're just looking at your phone. Nobody has to know what you're doing, which is great.

Just to bring it back to our community, which is obviously women diagnosed with breast cancer, and often there are a lot of changes, whether it's early menopause brought on by medication or surgery or change in your body. Maybe just say a little bit about how can this group of women really get back to some kind of satisfying intimacy and sexual relationships?

Lyndsey Harper (09:25):

Absolutely. I think it starts with learning the common outcomes of having a breast cancer diagnosis and going through treatment, the effects that it could have on your body and on your mind. As you mentioned, there's lots of those, right? When we're taking medications that can induce menopause when we have our ovaries removed and menopause happens really quickly, there can be lots of changes, including a lack of desire, dryness in the vagina, a sort of tightening and shortening of the vagina. Also body image issues. That's we hear about very frequently, your relationship, obviously with your breasts change, there's a lot of anxiety and depression. All of these play into who we are as sexual beings and being simply aware of those things can actually be very therapeutic, saying, “This is what might happen. These things are really common.” And then if you identify with any of those concerns here are the next steps to try to get you back to feeling not more normal necessarily, but really, maybe even thriving more in this circumstance of life.

But many women who haven't had the opportunity to navigate a sexual problem before haven't taken advantage of it, and I think in that way, it can be a real opportunity to communicate openly with your partner, to be reflective about your own sexuality, and then to challenge our healthcare teams to rise to the occasion.

Jean Sachs (10:58):

That's really helpful.

I just want our viewers to know that if you download the app, which is free, you can get a lot of information. And then I think if you want to dig deeper, there is a small fee. I encourage everyone to go to the app store and just download it.

One of my last questions is, if someone is struggling and they're ready to ask their healthcare provider how do they act? How do they bring it up?

Lyndsey Harper (11:23):

Yeah, I know it's such a good question. We get this a lot. “How do I bring it up with healthcare providers and how do I bring it up with partners?” We always say, you can blame it on us. Right? You can say, “Hey, I saw this thing on Living Beyond Breast Cancer,” or “I saw this crazy doctor who made this app, Rosy, and they said that vaginal dryness, after I've been on X, Y, Z medication can be really common. Can we talk more about that?”

Or they can sort of displace the conversation and then bring it back. Or, honestly these issues are very common and most providers can and will treat them, and if not, that will refer you to someone who can. I would just say to open the conversation in a very honest way to say, “You know what, I have been having pain with sex for 6 months, and it's not getting any better. These are the things I've tried (maybe moisturizers and lubricants). I need help because this is really affecting my life. What can we do about it?”

I know I talk about this stuff all day, so I no longer have the internal, negative reaction when I try to talk about these things, but the more you do it, the less you'd feel that way, and be very straightforward and matter of fact about it without breaking down all the intimate details, if that's not something that you're ready or want to do.

Jean Sachs (12:46):

Right. And I think the other thing is if your healthcare provider isn't receptive or isn't giving you the information, then it often is time to go consult with a second opinion. So that is really good advice. You have to start having the conversation.

Before we end, is there any other quick advice you want to share?

Lyndsey Harper (13:06):

You know, I just really appreciate advocates like you, Jean, for starting these conversations because you and I both know what a hot topic this is. And if you go and maybe look at it on different forums, there might not be a lot of conversation because people are embarrassed, but we know as advocates, because individuals reach out to us that these are very common and important topics and you deserve help.

If you've maybe had a bad interaction with one health care provider, I completely echo your sentiment to keep digging. You know, a lot of us have to become our own advocates in this space, as unfortunately, I know a lot of breast cancer survivors and thrivers have already encountered, and this may be just another opportunity to keep pushing because definitely there is help available.

Jean Sachs (13:51):

That is really helpful. And I know for the breast cancer community, I've talked to many women who felt like they had a very healthy sex life and then they were hit with breast cancer and so many changes happen. This was just another loss on top of a number of losses and having the energy to say, “Okay, I really do want to work on this,” I know sometimes it's challenging. I know for those people, you have to figure out what can you take on and when, because there there's just so many different assaults that happened.

I really want to thank you for joining us. Thank you, Dr. Harper. I want to encourage people to check out the Rosy app and there's more information on Dr. Harper on our website. She also has built out content specifically for the breast cancer community and we'll have another episode where we'll talk more about that.

Thank you, everyone, for listening. Remember Living Beyond Breast Cancer has closed Facebook pages. If you want immediate support and to connect to other women, go to our website and we will connect you to those pages. In the meantime, just please stay well. And again, stay connected, with Living Beyond Breast Cancer.