Female Sexual Life after Transplant

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Female Sexual Life after Transplant

May 1, 2016

Presenter: Stacy Tessler Lindau MD, MA, and Mary Clare Bietila, panelist and transplant survivor

Presentation is 36 minutes long with 23 minutes of Q & A.

Summary: Many female transplant recipients experience problems with sexual functioning as a result of their treatment. This presentation reviews the major types of sexual dysfunction and describes the remedies available to treat them.

Highlights:

• Many female cancer patients express interest in receiving care for sexual function problems but do not seek it out. Women should be encouraged to express these concerns and their medical team should be more willing and able to provide such help.
• Vaginismus is a condition that women experience as a closing or shrinking of the vagina. In many cases, this is due to a muscle spasm that can be readily corrected with a vaginal dilator or other suitable treatment.
• Transplant  recipients may experience the same type of vaginal dryness that accompanies menopause but to a more extreme degree. There are several over-the-counter treatments as well as prescribed medications that can help with this condition.

Key Points:

(04:11): Many side effects of cancer treatment that affect women’s sexual function can be prevented.

(07:48): Among cancer patients, sexual issues are often the highest reported unmet need.

(08:50): Across all age groups, roughly 40% of women in the general population report problems with sexual desire, lubrication difficulties, or inability to climax.

(10:38): Vaginal dryness is a common problem that can co-occur with pain and decreased libido and arousal.

(11:16): Chemotherapy and radiation treatment can interfere with estrogen production which is important for vaginal health and moisture.

(12:37): In one study of stem cell transplant recipients, two-thirds reported vaginal dryness, narrowing and irritation.

(25:58): Women should avoid contact irritants like scented soaps, creams, or cleansers in the genital area.

(30:54): To address vaginal dryness, lubricants can help with penetration.

(31:29): Moisturizers are a more routine treatment to prevent dryness. 

(33:09): Among medically approved treatments, estrogen can help with vaginal dryness.

Transcript of Presentation:

(00:01): [Marla O'Keefe]     Welcome and Introduction of Speakers. Good afternoon, everybody. My name is Marla O'Keefe, and I am with BMT InfoNet, the organization that put all this together. So I want to thank you all for attending this two-day event, and I hope you're getting a lot of good information.

Today, you are in the Female Sexual Life After Transplant workshop. This is all old news too, but the workshops are designed to be interactive. So we'll have the presentation first for about the first half hour, and then we'll open it up to question and answer. There's a microphone in the middle of the floor. You can get up and ask your questions, or we can have one of the volunteers pass it around, whatever works for you.

We're very excited and pleased today to have a wonderful speaker and panelist joining us, Dr. Stacey Tessler Lindau and Mary Clare-Bietila who will be providing you with all the information you need. Dr. Lindau is the director of the Program in Integrative Sexual Medicine at the University of Chicago Medicine, a program that provides care for and studies female sexual function in the context of aging and common illness. Most of Dr. Lindau's patients have sexual health concerns caused by cancer or its treatment.

For more than a decade, Dr. Lindau's research has combined biomedical and social science techniques to study life course health, aging, and sexuality. She served on the Patient-Reported Outcomes Committee for the Gynecological Oncology Group and is co-founder of the International Scientific Network on Female Sexual Health and Cancer.

Mary Clare is a stem cell transplant survivor and the director of Educational Engagement at Columbia College in Chicago. She was diagnosed with AML in 2014 and underwent a stem cell transplant at the University of Chicago. Now a passionate patient advocate, Mary Clare is enthusiastic about fostering the creative spirit in young people and those impacted by cancer. Please join me in welcoming them to this session today.

(02:19): [Dr. Stacey Tessler Lindau]    Overview of Talk. Thank you for the introduction and good morning, everybody. Can you hear me? Yes? Okay, good. My social life has suffered lately between work and the children, but I went to a concert last night, and it was great. But I was yelling to talk, and so I've lost my voice a little bit today.

(Well, first of all, I want to acknowledge Mary Clare Bietila and thank her. This is the second time in my history as a scientist and as a physician sharing the podium with a patient. For me, I feel that I can deliver a message in a much more effective and authentic way if I can partner with a patient.

And so, I hope all of you, when you have a chance, will thank her, because obviously this topic is not one that everybody's used to talking about in public. It's just very special that we're able to know each other as doctor and patient, but also as two women who share a concern for this topic and are willing to speak publicly about it.

So I want to thank all of you for coming. Our format today will be about 30 minutes of information didactic, and then 30 minutes for question and answer. Mary Clare and I spoke about this in advance. For question and answer, you can direct your question ... Whichever of us you would like to answer the question first, just let us know and that's how we'll share that. Otherwise, we'll both give our best effort to respond.

So very briefly, so you have some understanding of what my foundation of knowledge is in this field, I want to just illustrate for you the mission of the Program in Integrative Sexual Medicine, which is to create and share knowledge that is used to preserve and improve sexual function and lives of all women and girls affected by cancer. Big emphasis on preserve.

(04:11): Many side effects of cancer treatment that affect women’s sexual function can be prevented. My point of view, and I've published on this in the literature, is that many of the side effects of cancer treatment that negatively affect a woman's ability to function sexually can be prevented. As we gain more knowledge, we will do better to ensure that as women go through their cancer treatment or even contemplate what treatments we might want, we ask not only about general side effects or not only about how this might affect our fertility, but also it's perfectly appropriate to ask how might this affect my sexual function and what can I do to preserve that?

So we see women with all cancer types. This pie chart reflects the distribution of cancer types in the population. So because breast cancer is such a prevalent condition, about half of our patients have breast cancer.

I share this with you because many of the sexual function problems that occur for people who have leukemia, lymphoma, or a bone marrow transplant are similar to those that we see in other cancer types, because cancer types often, many, share the treatment type that is chemotherapy, and chemotherapy affects the rapidly dividing cells of the body, including, for example, the ovaries.

(05:24): Many female cancer patients express interest in receiving care for sexual function problems. We've studied the need for medical care for sexual function problems in women with gynecologic cancers. These needs assessment studies have been done in other cancer types as well. These data reflect the general issue, which is that a significant proportion of women are interested in receiving care for these problems, say they would see a doctor for these problems, are willing to be contacted should these services become available.

(05:50): Not all women who are interested in help for sexual function problems actually seek it out or receive it. We see somewhat of a gradient by age, but I think it's important to point out that even in the range of one in five women 65 and older share these concerns. But there's a gap. There's a gap between interest in receiving care and who actually seeks care. One of the reasons for this gap is that, over time, more but still very few places where women receive their cancer care actually have a referral source for treatment for sexual function concerns. So that's a health services problem that I've been working on.

 (06:22): One reason is that woman expect their doctor to raise the issue but they often don’t. The other is that these issues simply just don't come up in routine care. There is ample research, including my own, but by many, many others across cancer types, including leukemia/lymphoma, that while patients regard their sexuality as pertinent to their health and pertinent to their medical care, they expect the physician to raise the issue.

And so, while I promise you that I continue in every venue available to me, including a manifesto, an angry manifesto, I published in the literature several months ago, I will continue to encourage physicians and teach medical students about how to incorporate this topic into our medical care.

(07:03): Women should be encouraged and have the confidence to raise sexual function concerns with their medical team. I also want to ask you to feel confident to raise these questions, because they're appropriate, they are health relevant, and it may be the only way you will be able to close this gap, frankly.

So what about research that's specific to people with leukemia or lymphoma? There have been some very well-done studies, several of which are led by female scientists, unmet needs among patients with leukemia or lymphoma.

 (07:31): Among cancer patients, sexual issues are often the highest reported unmet need. Here's a study by Parry and colleagues that looked at 477 women and men ages 18 to 85, a relatively large sample for studies of this kind, looked at people with cancer types that you would be familiar with, and looked at participants reporting an unmet need.

As you can see, the highest reported unmet need was sexual issues. Second to that, handling medical living expenses, 38% of people, emotional difficulties, 37% of people. So sexual concerns are both a high need and also highly likely to be unmet. Just making the point again.

 (08:08): Prevalence of sexual problems in the general population. Now what about the prevalence of sexual problems more generally in the population? Sexual problems, of course, as we live through the chapter of our life that is cancer care and we move into a survivorship phase, we're also aging. I mean the gift of life is aging. And so, it's important to understand that sexual function concerns are prevalent among the population that is aging.

So these are data from a national population-based study we conducted 2005 and 2006 in the United States, representative of the whole United States population. We knocked on people's doors and, with the support of NIH, were able for the first time to get a national estimate on sexual problems in the United States population.

(08:50): Across all age groups, roughly 40% of women in the general population report problems with sexual desire, lubrication difficulties, or inability to climax. I just want to point out, you saw that ... Remember that number, about 41% said they had unmet sexual needs. Well, if we look at women in the 57 to 64-year-old age group and the 65 to 74-year-olds and the 75 to 85-year-olds, about 40% across each age group identify a lack of interest in sex as a problem. Somewhere between 35% and 43%, again, right around 40%, identify lubrication difficulties as a problem. If we look at inability to climax for women, somewhere around 34% to 38%, not too far again from 40%, have an inability to climax.

So while we do see a prevalence of these problems in leukemia/lymphoma patients, we also see a similar prevalence of these problems in the general population. That is to normalize these concerns. It's hard to find other health conditions in the United States population in the range of 40%.

Even if we look at erectile difficulties, and there are very effective treatment options available for erectile difficulties, we see 30% in the 57 to 64-year-old age group, and these are men. Then there we are again around the 40%.

(10:05): Sexual function problems are prevalent for both men and women but the range of treatment options for women is more limited. So one of the challenges for females, of course, and I'll get to this in a few minutes, is that the prevalence of our problems is similar to men, but the range of treatment options, we see a pretty big gap there as well.

(10:18): What are the common sexual difficulties after transplant? Now, again, I will say that the difficulties we see are not dissimilar from the common difficulties we see in the general population. Although graft-versus-host disease is very specific to the transplant population. I'll talk a little bit more about that in depth.

(10:38): Vaginal dryness is a common problem that can co-occur with pain and decreased libido and arousal. But common problems, vaginal dryness, this can be a problem of menopause more generally, loss of libido, painful intercourse. By the way, these things oftentimes co-occur. If there's dryness, then we have pain. Dryness plus pain can decrease our interest or our desire, our libido for sex. It makes sense. Also can interfere with arousal.

So I would say oftentimes the first problem is dryness. The second problem is pain, and after repeated efforts at intercourse, which are painful, frustrating, discouraging, then we start to see loss of libido and difficulty with arousal. That's a common scenario.

(11:16): Chemotherapy and radiation treatment can interfere with estrogen production which is important for vaginal health and moisture. What are the causes? Well, I mentioned chemotherapy and even radiation. Either of those treatments can interfere with the normal sexual physiology, including ovarian function. The ovaries are an important producer of estrogen. Estrogen is a hormone that drives vaginal lubrication and elasticity, which is important for moisture, arousal, and flexibility of the vagina for penetration.

(11:42): Other factors that can predict sexual problem after tranplant. But there are some other factors that help us sort of ... We could predict who's more likely to have these problems if we talked about them earlier. Women who come to their cancer diagnosis with a preexisting history of sexual function problems are more likely to have sexual function problems after, and they may actually even be more severe.

People who have already relational issues. Relationships are obviously absolutely essential for partnered sexual activity. Then I've mentioned a couple of the others.

(12:14): In one study of stem cell transplant recipients, two-thirds reported vaginal dryness, narrowing and irritation. Sexual function concerns are relevant. This is a study by Gemma Dyer from Australia. Actually the Australians are very far ahead, or they're pioneers in sexuality research, especially female sexuality research. Here's a study looking at 122 women with allogeneic stem cell transplant between 2000 and 2012.

66% of those who had resumed sexual activity after transplant had difficulty with sexual function. So a little higher than those general 40% numbers I showed you. The common problems were vaginal dryness, vaginal narrowing, vaginal irritation.

(12:51): Problems with vaginal narrowing. I'm going to give you a little bit more insight to this vaginal narrowing problem, because it's not uncommon that my patients come and say, "I feel like a virgin again," or, "I feel like it's shrunk down there." People have a hard time understanding why that would be because, for the most part, the treatment does not directly involve any surgery or intravaginal treatment. So I want to make it a little bit more understandable about why the vaginal narrowing.

(13:16): These vaginal changes cause pain with intercourse. Those combinations of symptoms then are experienced as pain. The doctor term for that, the Latin term for that, is dyspareunia. It means painful lying together. But when you hear that term, it is just the medical term for painful intercourse.

(13:32): Other research suggests vaginal issues and painful intercourse may become less prevalent over time as they resolve.  Here's another study. This is from the Fred Hutchinson Cancer Center in Seattle, which has also done some very good work in this field. What was unique here is that the 44 women were followed prospectively for five years after transplant.

So we see the data I just showed you look at more acute sexual side effects or sexual outcome problems. This looks more at the long term. In the long term, you start to see some prevalences that look a lot more like the general population. Fortunately, it appears that painful intercourse, vaginal tightness, vaginal bleeding, and irritation are much less prevalent five years later than they are when we look sooner out after treatment. So that means some of these things resolve.

(14:16): Vaginismus is a prevalent condition in which women report closing or shrinking of the vagina.  I want to introduce you to a term vaginismus. I imagine that some of you have heard this term. But in my clinic, the vast majority of my patients have never heard this term. In fact, even in gynecologic training, this is not a condition we really come to understand very well.

This is the most prevalent condition I see in my clinic. The good news is it's very treatable. In fact, part of the treatment is just simply educating my patients about what it is.

So first of all, patients with vaginismus oftentimes say these words: "It feels like he's hitting a wall." Now I use the he, the vast majority of my patients identify as heterosexual. Of course, patients may have same-sex partners and the word he wouldn't be he. But it might be, "It feels like it's hitting a wall when I have vaginal penetration," or, "It feels like I'm a virgin again."

Verbatim, I hear these phrases over and over again, and people perceive a couple of things. One, that somehow the vagina has scarred shut, maybe because of the use it or lose it idea, like, "Oh, we haven't been active in so long. It must have just closed down for business." That's what a lot of people think.

Other people think, "Oh my god, maybe it's a tumor. There's something down there. I'm scared," especially if there's bleeding involved, and there can be bleeding from this problem. Others think it's something about graft-versus-host disease, "I'm having scarring in my vagina," because that is possible.

(15:49): While many women suspect a tumor or graft-versus-host disease, the real problem is almost always a correctable muscle spasm. So the vast majority of people with this problem have a muscle spasm problem, an entirely correctable muscle spasm problem. I have never once ... Now, I've seen close to 300 unique patients since I've been practicing exclusively in this field since 2008. I've never once found a tumor that was the explanation for the wall.

(16:14): I have also not found intravaginal graft-versus-host disease. I have seen vulvar manifestations. The vulva is the external part of the anatomy. The part you can see from the outside. The vagina is the internal part of the anatomy, the birth canal. I have not seen intravaginal graft-versus-host disease.

(16:34): Now that may just be I haven't seen it, because I showed you a fairly small fraction of my total patients, of those 300 patients would be even susceptible to graft-versus-host disease. But the most common problem I do see is this muscle problem.

(16:49): Anatomy of female genitalia. So I just want to orient you to some anatomy, a basic anatomy lesson. We're all familiar with the anal minter, and that's the picture you see here. Anus, vaginal opening, urethra. This is the tube that comes from the bladder where the urine comes out, clitoris. This is the anal sphincter. To control our bowels, we have to consciously bear down on that sphincter to pass a bowel movement, or if we've really got to go, we have to consciously contract that muscle to prevent us from losing stool when we don't intend to.

(Well, look up here. There's a muscle here called the bulbocavernosus muscle. You do not need to remember that. All you need to do is open your minds to imagine that there's also a muscle that looks a lot like a sphincter around the opening to the vagina. Can you see that? Okay. Nobody ever taught me this in medical school.

(17:42): A spasm in the bulbocavernosus muscle causes the sensation that the vagina is impenetrable. The bulbocavernosus muscle is about this far in. That's where it kicks in. So patients will say, "Well, my partner can penetrate this far, and then he hits a wall." That's why the hands there. So if you've had that experience, now you can feel the sense of relief that what you're experiencing is a well-functioning and maybe even an over-functioning bulbocavernosus muscle.

(18:09): Resuming intercourse after treatment may bring anxiety which triggers this muscle spasm and its related problems. Why is that muscle spasming with penetration? Well, maybe the first time you attempted to have intercourse after your treatment, maybe it's been some time. You might have felt anxious about it. You really wanted to do it, but you also felt a little bit nervous. Anxiety will cause sphincters in the whole body to contract, including this one. Or maybe you tried to have intercourse and you were surprised because nobody told you it hurt. It was painful. And guess what? Pain triggers sphincters to contract.

This gets to basic human physiology, fight or flight. The body is resisting penetration under circumstances where it does not feel relaxed, safe, comfortable. In fact, it's this muscle that protects the female mammal from sexual penetration under the wrong circumstances.

So this muscle reflexively contracts. You can control it as well. You can bear down on it. This is a muscle women have to engage for childbirth. You can contract it. Some of us know Kegel exercises. We've learned to contract that muscle. But it can also be reflexively triggered almost subconsciously.

So when that happens, if there have been multiple attempts at painful intercourse, that muscle gets stronger and stronger and stronger. Then it not only prevents penetration, but it pulls tight the whole vaginal canal. It pulls it really tight, almost like a rubber band. If penetration actually ... If you can get past that muscle, then the penetration itself can feel very uncomfortable.

I want you to understand that because based on my experience, a lot of people might be feeling this. There's a website called vaginismus.com that explains it in more detail. There are approaches to treatment.

(19:53): A simple self-care approach for vaginismus is to use a vaginal dilator. One of the most simple self-care approaches to treatment is to use vaginal dilators. Now some of my patients ... In fact I ran into a patient of mine last night who was making fun of me, because the best way we can think to show patients these various vaginal dilators is in a giant shoe bag filled from tiny, tiny, tiny to big, big, big.

So patients can choose. Which is the one you think would fit today? Which one is your goal? So we know how far we need to get. We examine our patients with these vaginal dilators. Oftentimes just that act of examination is very revealing, because patients, and we have science to corroborate this, will underrate the size of their vagina based on this vaginismus experience. They'll say, "Well, nothing bigger than this can go in."

(20:39): Women can also learn to bear down on the bulbocavernosus muscle to make penetration easier and more comfortable. But with education and a bearing down, bearing down with penetration, allows that muscle to open up. So if you say, "I'm going to bear down," it seems a little counterintuitive to bear down when something's going in, but that's a technique that we use that makes penetration easier.

(20:54): Dilators are available direct to the consumer but a pelvic exam is recommended first. So these dilators are available direct to consumer. I would recommend always a pelvic examination or a consultation with a gynecologist, family physician, nurse practitioner who can do women's health for an exam before using the dilators. But they're very accessible and they're relatively low cost. Sometimes insurance will reimburse. This is one of the ways that we can treat that vaginismus problem.

(21:20): Some physical therapists also specialize in treating vaginismus. Sometimes a physical therapist is needed. How many of you knew that there were pelvic physical therapist? People who do physical therapy, transvaginal, transanal, to address pain? So a couple people.

So there is a women's health subsection of the Physical Therapy Association that lists all the physical therapists who are credited to do this kind of work. There are also pelvic physical therapists who address male pelvic pain.

(21:48): Not all pelvic physical therapists are attuned necessarily to sexual dysfunction. They're much more attuned to pain and urinary continence. But, over time, we've been able to work with physical therapists to expand their practice and understanding of the sexual dysfunction applications. Vaginismus is bread and butter to pelvic physical therapy. And so, oftentimes we will refer patients for that.

(22:12): Topical numbing agents may also treat vaginismus. Sometimes a topical numbing medicine can be helpful. People say, "Well, I don't want a numbing medicine because then I won't know if I'm tearing or something. I could really injure myself." The numbing medicine is just typically used, let me go back one, right around the opening. I don't use it in all cases, but some patients benefit from having a little bit of numbing medicine right around the opening here.

We're not putting it on the clitoris, which would really decrease sexual pleasure. We're not putting it all over, which could interfere with oral sex or cause numbness of the partner's penis. We're just putting a little bit here five to 10 minutes before penetration, maybe practicing with the dilators. It can be very helpful there and sometimes for sexual intercourse. I don't know of any instances where the man's penis has become numb from using a small amount right here. Typically it's lidocaine, and that's a prescription medicine.

(23:09): Graft-versus-host disease is common but underdiagnosed. So I am not an expert ... You certainly have other experts at this meeting in graft-versus-host disease. I learned about it in medical school, but in gynecology, it wouldn't be one of the most common conditions we see. I've relearned about it since I'm caring for patients who have this condition.

(23:26): Although ... Well, let's go through the information here. Common but underdiagnosed. It may be higher risk with peripheral blood versus bone marrow transplants. Maybe the best available evidence is from a retrospective analysis of a clinical trial that was done for other reasons. So the words may be should be there. I do think the chronicity of graft-versus-host disease one day might be a reason why people would choose peripheral blood versus bone marrow. But I think more evidence is needed.

(24:00): Symptoms of vaginal GVHD are similar to the type of vaginal dryness that accompanies menopause but to a more extreme degree. Common symptoms are similar to those symptoms we see in menopausal women who haven't had cancer treatment. So vaginal dryness. Sometimes we can see an itching, burning pain just due to low estrogen alone.

Physical findings, though, would be typically more extreme than we would see generally in menopause. In the most severe cases, we can see scarring changes that can affect the clitoris and vagina. As I said before, I have not seen those yet in my practice.

But here are some images from the medical literature. I know you probably don't look at pictures like this all the time, but I think it's important to understand it because if you do see these changes, it's certainly important to bring it up with your treating physician.

So mild changes would be erythema means redness, redness around the opening to the vagina. Again, back to the anatomy lesson, we have the clitoris here, the urethra, the vagina, and this is called the vestibule, the vulvar vestibule, or, just generally speaking, all the general public really needs to know is the vulva and the vagina. Those are the two different structures.

(25:03): Other sexual dysfunction symptoms associated with graft-versus-host disease include redness or fissures around the vaginal opening. Then here we see some fissuring oftentimes in the skin fold creases, which can be painful. You know painful a paper cut is on your finger. So imagine a paper cut type lesion here. Then in the severe case, we can see stickiness of the clitoral hood to the clitoris itself. The male equivalent would be if the foreskin couldn't really be retracted because it was adherent to the penis. Then some erosions. Again, I've not seen this extreme of a condition.

So the diagnosis is oftentimes a diagnosis of exclusion. In other words, we've ruled everything else out. Typically my patients who come with these symptoms have had skin biopsies somewhere else on their body, like on their arm or on their back, that have determined whether it's likely they're having a graft-versus-host disease problem.

(25:58): Women should avoid irritants in the genital area like scented soaps, creams, or cleansers. We reduce contact irritants. So one of the best pieces of advice I can give you today ,in addition to know about the sphincter around the opening to the vagina, is to avoid soaps, creams, cleansers. I don't care if they're marketed as being low irritant. Pads, if you can avoid, anything scented to the genital area.

After menopause, and especially with what we call iatrogenic menopause, the genital area is extremely sensitive to these irritants. So people say, "Well, then what am I going to wash with?" The inside of your nose cleans itself. We don't put soaps, creams, lotions. They would burn. Sometimes you accidentally get soap inside your nose and it burns, or even in your eyes. The genitals are the same way. You may not feel the burning at the time of washing, but you're feeling the burning at other times when you're attempting to penetrate, like with sexual intercourse.

If you feel you must clean with something, water with distilled white table vinegar. Spray it on. Do not forcibly squirt anything into the vagina. That can cause a life-threatening condition called air embolus. Nothing should be actively squirted into the vagina. I do not advocate douching. I know of no evidence that douching promotes health.

(27:10): Low dose, topical steroids may also help with genital GVHD. Topical steroids. Even I start with the lowest dose possible. Even over-the-counter hydrocortisone has been effective for some of my patients. Sometimes we have to use higher potency prescription-strength topical corticosteroids. But if you think you're having this problem, a gynecologist or somebody as skilled should take a look and maybe do a small biopsy, not because we're looking for cancer, but because we're trying to make the right skin condition diagnosis and treat it appropriately.

There's not great compelling evidence for calcineurin inhibitors. If you're not sure what those are, those are things like cyclosporines. Elidel is a trade name. Prograf, I know some of you use for other reasons. But these have been tried and there's not great evidence.

(27:51): Estrogen treatment is another option for vaginal dryness. Estrogen is oftentimes an option, and some of my patients are using local vaginal estrogen to address dryness or atrophy. Regular intercourse, once we've addressed the underlying problems, certainly can be helpful, or vaginal dilation.

(28:07): Transplant recipients may have an increased susceptibility to sexually transmitted infections so monitoring of platelet and white blood cell counts may be recommended before sex with new partners. We do need to think about safe sex across the life course, especially with a new partner or with a partner who has other partners. There is increased susceptibility to sexually transmitted infection or flares of herpes or human papilloma virus, which are almost ubiquitous in the population.

The evidence about what the cutoff is for platelets and white blood cells is somewhat controversial. I see varying numbers. I ask my colleagues and I get varying numbers. But a recommendation about low platelets, something around less than 50,000 and white blood cells less than five seem to be out there.

Now I'm, again, saying that I don't see great evidence. I think it's important to speak with your doctor about whether sexual intercourse is contraindicated because of your blood counts.

(28:52): There's a very good resource from the American Cancer Society about when and how to talk about cancer with a new sexual partner. It's directed to single people. But I think it also has some good advice about how to talk to your spouse. A lot of times it's the elephant in the room. It's just something that doesn't get talked about during the acute phase. Then it's hard to figure out how to start the conversation later.

(29:12): Some cancers like HPV may spread through sexual activity but this does not apply to leukemia or lymphoma. I do want to say some cancers like HPV, human papilloma virus, related cancers relate to an infection that can spread. I know of no evidence that sexual activity, in the context of leukemia/lymphoma, is a mechanism for spreading cancer. For those of you who know that, it may seem silly to say it, but a lot of my patients reveal a worry that they could spread their cancer to their partner through sexual activity. So I think it's important to say.

(29:39): I know some of you were in here for a sleep session. Good sleep is essential to libido and sexual function. If you are snoring or you're the partner of somebody who's snoring, there's a correctable cause of poor sleep that can affect libido. Of course, things like good communication, mutually supportive relationship are very important prognostically for sexual function and for recovering sexual function after cancer.

(30:04): Some of my patients find this is a chance to give a boost to a long-term relationship, like, "You know what? Now's a good time for us to revisit, make sure we're both happy in this relationship. What can we do to be more loving?" The sexual life can obviously be a beneficiary of that.

(30:22): These are some other common modifiable risk factors that relate to female sexual function problems. These probably don't surprise you. These are behaviors that can affect your health more generally. Sedentariness, chronic sitting is something we do, especially if we have a lot of transportation to get to and from the doctor's office or we have computer-based jobs. That can cause tension to the pelvic floor. Chronic sitting increases the likelihood of that vaginismus problem.

(30:54): To address vaginal dryness, lubricants can help with penetration. We can talk more about this during Q&A, but there are two common over-the-counter products that couples can use to address dryness. I want to give you a mnemonic to remember these. It's a little bit silly, but these two kinds of products do different things. Lubricants are for love or making love. Well, the M is a problem. Love. They're short-acting. They're meant to reduce friction during intercourse.

(31:21): A lubricant is not something you use on a daily basis. It's used for penetration. They're also helpful when you're doing vaginal dilation.

(31:29): Moisturizers are a more routine treatment to prevent dryness. Moisturizers are more of a maintenance therapy. So if a woman's using estrogen, she's using it every couple of days long term to address the thinning and dryness in the vagina. But there are non-hormonal over-the-counter moisturizers, I can answer questions about that, that are regular use. They're also used on an every two to three-day basis. So moisturizers would be used regularly and then a lubricant would be added for intercourse, but they're not great as lubricants.

(31:56): Medical professionals bear some responsibility to become prepared to help patients with sexual dysfunction issues. So I mentioned the elephant in the room problem. The can of worms problem is the doctor's problem. So what happens when the issue comes up and we're not prepared? That's how the doctor's feeling. "Uh-oh. I don't know what to do." The solution to that is to support professionals in gaining the skills to treat these problems. That's what our scientific network is doing.

(32:19): Spend as much time thinking about your sexual health as you do on the color and style of your hair each week. Why the hair? Well, I want us all to think about, men and women, how many minutes a day we spend on our hair. If our hair gets long or we'd like it to be a different color, we generally go to a professional for help.

What I talk about with my patients is if you could just spend as much time each day on your sexual life, on your relationship, on your partner, as you do on your hair, what would your relationship be like? It doesn't necessarily mean sex, but like, "Honey, I love you." Five minutes to blow dry your hair. What if you just spent five minutes focusing on your partner, and vice-versa?

If you and your partner find that that's not enough, or you're really struggling with the elephant in the room, well, then a professional is there to help. Sometimes a coach is just needed to get through those conversations. Again, I can give you more advice about that.

(33:09): Among medically approved treatments, estrogen can help with vaginal dryness. There are medical treatments to address sexual function problems. I think the Q&A, we'll want to ask some questions here. For women, there are only two FDA-approved drugs: estrogen for treating vaginal dryness and there is a new drug on the market called flibanserin for treating libido. I'm not optimistic that that drug will benefit anyone other than the marketing around it is going to make it easier to talk to our doctors about these concerns.

(33:39): Flibanserin for enhanced libido is a more dubious medication with several contraindications. Again, during Q&A, if you want to know more about flibanserin and my skepticism, I'm happy to answer questions. But I want you to know that if you are interested in the drug, women are being asked to sign a consent form that they will not drink any alcohol for the duration of treatment, which is recommended as at least eight weeks, to see if there's benefit and then nightly for as long as you want the benefit. Then there are other kinds of contraindications.

This is one of the reasons why I haven't had a single patient say she wants to use it. She's like a glass of wine would be cheaper and easier.

(34:16): Therapists can also help with sexual issues and relationship concerns. Sex and couples therapy are another important modality. The American Association of Sexuality Educators, Counselors, and Therapists certifies counselors and therapists. They have a list geographically of who's certified. Do not assume even that a marriage and couples counselor is certified in sex therapy. You would assume a gynecologist knows just what to do about vaginismus. Increasingly, we will do better. But really you need to find somebody who's expert in this area, and those experts are out there.

(34:45): Mindfulness treatment and sensate focus treatment are other treatment options. I list for you two of the dominant techniques that are being used. There are self-help resources both for mindfulness treatment and sensate focus treatment. If you Google those words, you will find self-help resources.

(34:59): So I'd like to end with just a couple quotes from my patients. These come verbatim from either comment cards patients have left behind or from the chart. I also want to say my patients come to me oftentimes because their cancer doctors have referred them.

(35:16): We all know that when we have cancer, we want our cancer doctor focused on the treatment and cure of our cancer. That is number one. My patients are deeply grateful to their oncologists for the great and amazing work that they do.

(35:31): Patients should raise the issue of sexual health with their doctors if the healthcare team does not ask about it. The topic of sexuality, because it gives a can of worm feeling sometimes to doctors, often it easily slips off. But if you raise the issue, I believe that oncologists are uniquely trained to have difficult conversations with patients and that they will find a way to therapeutically respond.

(35:48): So, yes, we should expect more, always more, from our doctors and our doctors' competencies. And, yes, if you have a question or concern, it is perfectly legitimate to raise your concerns.

(36:01): So in the interest of time ... I think you have the slides. But in the interest of time, we'll stop there and we'll turn it over for question and answer. Thank you so much.

Question and Answer Session

(36:16): [Marla O'Keefe]     Thank you very much, Dr. Lindau. That was a wonderful presentation. We're now going to take question and answers. We are audio recording these sessions for those that could not attend. So there's a microphone up in the middle of the floor. You can either walk to the microphone, or we'd be happy to pass it around to you for your questions. Let me see what my notes say. That is it. We've got about 20 minutes for questions. So go ahead and we'll ...

(36:46): [Dr. Stacey Tessler Lindau] I just wanted to add, sometimes it works. Sometimes people don't feel comfortable coming to ask the questions. If you want to write your question on a piece of paper, maybe we could hand it to you, Marla.

(36:54): [Marla O'Keefe] Absolutely. Yeah, there's blank paper in the back of your notebooks and some note cards if you'd like to do that. You can either bring them to me or the volunteer in the back of the room and they'll read them for you. Absolutely.

(37:06): [Speaker 4]  So interestingly enough, a lot of the vaginal dryness and a lot of the things you said mirrored menopause. I've come across a lot of young adult girls, at this conference even, telling me that they have been set into early onset menopause. How much of what you're saying is related to that, is related to the early onset menopause, and have you seen a lot of that particular ...

(37:30): [Dr. Stacey Tessler Lindau] Yeah. Thank you for that question. So let me just give a general definition of menopause. Menopause is the cessation of menses. It's usually a diagnosis made in retrospect, because the definition requires 12 months of no period. So if you only had three, we're not sure.

Now that's the definition for natural menopause. Oftentimes menopause is diagnosed as a set of symptoms like hot flashes. I saw some people feeling hot. I'm sure the topic helps, too. Hot flashes, maybe noticing you wake up more at night and you have to get up more frequently and go to the bathroom. Vaginal dryness is another common problem. Those symptoms are largely driven by a drop in estrogen.

(38:16): Estrogen is the hormone that regulates the transition from premenopause to postmenopause. What happens in postmenopause is the ovaries are producing less estrogen than they do premenopause, and therefore the period cease. Without estrogen, the layers of the vagina are not as plush. They don't turnover as frequently. The vagina is less elastic. So it doesn't stretch as easily.

The normal vagina is like an accordion. It has folds in it. You can imagine the accordion. It's designed to stretch. But without estrogen, you get a flattening of those folds. And so, it has a little bit less give.

Now, for breast cancer patients or other patients with estrogen receptor sensitive cancer tumors, we are very, very cautious, obviously, about using estrogen therapy. In leukemia and lymphoma patients, I always work in partnership with the oncologist to make sure I don't inadvertently recommend something that would interfere with the treatment. But for most of my leukemia/lymphoma patients, we are able to use estrogen to address the dryness problem.

(39:27): So the answer to the question is, yes, a lot of these symptoms are premature menopause. They result from chemotherapy and radiation treatments that affect the normal function of the ovary. Therefore, the ovary produces less estrogen. Therefore, hot flashes and vaginal dryness in varying degrees, depending on the person, oftentimes depending on her age. The problem can be solved the way we treat menopause more generally, oftentimes with estrogen, in partnership with the oncologist. So I hope that answers your question. Did you want to add anything there, Mary?

(40:02): [Mary Clare Bietila] Mary Clare’ experience with menopause after transplant. Sure. My experience when I came to this practice, I saw one of these nice little brochures. Actually my husband saw one of the brochures for the Prism Clinic when he was seeing his regular doctor at University of Chicago, and said, "Hey, you've got all these problems. You should go talk to this lady."

I had brought it up to my oncologist and she said, "Oh yeah, we meant to recommend that to you. But there are so many other things we've been recommending to you." So even my fabulous oncologist, it slipped her mind.

So going to this clinic, I thought maybe I'm postmenopausal, maybe I'm menopausal. My period stopped right when I started my induction. I think I started induction and had my period and then didn't have one again. So it had been about eight months since I'd had a period. I had a series of hot flashes during induction and those crazy nights where you wake up totally in a puddle.

I was hospitalized, like many of us, for very long periods of time. I did not have sex in my hospital room, unfortunately. There's just no privacy. It's just not going to happen. So we were out of practice and tried to get back into the swing of things, and it was painful. It was really painful. The more that we tried, the more painful it was. It did become a cycle.

I had some incontinence issues as well and was wearing pads on a regular basis, which was not helpful. I was using Claritin and Benadryl on a regular basis, which a lot of us are told use Claritin for many different things. Use Benadryl for premeds. That does not help either. That dries you out everywhere, and the soaps.

So because of the incontinence issues, I was probably cleaning that area more than needed. So all of those ... Just going to these appointments just blew my mind. I learned a lot. Estrace was helpful and we were able to ... And this is one thing I just did want to bring up to you guys, especially the young adults. If you're not sure where you are as far as menopause goes, that's a big question I think a lot of us have. Am I menopausal? Am I postmenopausal?

In the panels that my doctors did on a regular basis, the estrogen levels were included within those panels. So she could pull up an Epic and see, "Oh, yeah, you're not producing anything. So I can say for sure you're in menopause."

So that was really helpful for me. I think that was empowering in some ways to say will I, won't I, what's happening, to just know, okay, well, that's done and that was helpful. But Estrace has been really, really great as a regular treatment to help with all of those. I have restored sexual function, as well as restored interest and libido. So that's been really great.

(43:11): [Dr. Stacey Tessler Lindau] Thank you so much for adding. I mean isn't it so helpful? I could talk all day. Yeah, thanks, Mary Clare. Let me make a couple caveats here.

(43:20): Okay. So Estrace is the trade name for a generic called estradiol. It comes in tablet, ring, and cream forms. Most of my patients are using a cream form. I try to use the least amount in the place where we need it most, and then we work our way up if we need to. But the general feeling is less hormone, the least amount for the shortest period necessary.

(43:44): The other thing I want to say is about the hormone testing. So I do not routinely do hormone testing for my patients with sexual function concerns. There's just very little correlation between estrogen level, testosterone level, libido, function. I mean it would be great if it were, but it's just not.

It's really my patients who are reproductive age, who are being followed by their oncologists, who come oftentimes with the estradiol levels and follicular-stimulating hormone level, FSH level, which tells me how hard the ovaries are being stimulated to try to ovulate. The combination of those two numbers can give us a sense of where a woman is in terms of premenopause, postmenopause.

But even some women will have high FSH levels, low estradiol levels. This is particularly true for the young reproductive-age women. Then, over time, they revert back to ovulating. So I should make clear for you  and for others that we wouldn't know for certain necessarily that you couldn't resume ovulating. It's frustrating. People want to know for certain. But we can take those factors into account and say these numbers are lining up with your symptoms, which I do think people oftentimes find validating.

(44:54): [Mary Clare Bietila] I think a lot of times patients want an answer. You really do. And things change. I mean I think for those of you who have transplants recently, or 10 years ago or 20 years ago, every few years, everything seems to change. So I think we are used to that. But for me, I wanted to know at that moment what this landscape is like. I'm not interested in having more children, so this was more certainly conversations having to do with sexual function and how to treat this, and really how to think of myself in that ... Your life trajectory as a woman.

(45:28): [Dr. Stacey Tessler Lindau] Yeah, very good point.

(45:30): [Speaker 5] I really appreciate you sharing, because this is a little awkward to stand up here in a group and talk about this. But with that being said, I'm going to try. Do you have any recommendations for lubricants, non-estrogen-based? Intercourse is very painful and usually accompanies some blood, and the over-the-counter lubricants burn.

(46:01): [Dr. Stacey Tessler Lindau] Yeah. Thank you for raising that question. First of all, I do feel very strongly, and we published ... When I say we, I think there were 11 or 12 authors from 10 institutions all at major cancer centers in the United States, who just published a paper in CA, which is one of the largest, highest impact cancer journals in the world, that makes very clear our opinion ... And this included mental health professionals, psychologists, et cetera, that a woman having sexual function problems must have a physical examination that includes a genital exam, an internal vaginal exam.

(46:39): So I think that anyone who's having pain, burning, bleeding, you must be seen for that evaluation. That's number one. Number two, there are a whole variety of lubricants. In fact, at one point my lab decided we were going to try ... It was like an archeological pursuit, try to find at least one sample of every lubricant and moisturizer on the world market. We had hundreds, and we stopped because we ran out of room for these products.

So I'm reluctant to recommend one or another because there's not good science, but the products that include glycerins and parabens are oftentimes irritating for people, and many of the products include those. There are some newer products that are based on hyaluronic acids, and acid does sound like it would burn, but actually these products tend to have fewer of those other ingredients. I've been finding my patients have been doing okay on those.

(47:43): But you know what? Vegetable oil, olive oil, coconut oil, food-grade oils that are in your kitchen, we eat them. We've already made the decision to put them inside our bodies, and they are very effective lubricants. Coconut oil after a shower at night, not when you're going to go walk around, can be a very effective moisturizer. So if you find that you're easily irritated from the products that are on the market, go to one of the food-grade options.

(48:13): Now the other thing I want to say is, and you made this point, it's exceedingly common. As a culture, we are hyper-hygienic. We put too many cleaning products on our bodies. The FDA, the Food and Drug Administration, treats moisturizers and lubricants as cosmetics. They're not treated as drugs and therefore they're not treated with the same level of scrutiny

(48:35): But these are cosmetics. If we put them in our vagina, it's the one place that actually communicates to our intraabdominal cavity. It goes literally inside our bodies potentially. So while I know of no evidence to suggest that the common moisturizers and lubricants or the contents of those products that are on the market are carcinogenic, it seems to me that if we can moisturize and lubricate with things that we've already chosen to ingest as foods, that might be the more natural option. Avoiding hyper-hygiene, the soaps that you use, the cleansers, the creams, the pads are oftentimes scented, have all kinds of irritants that are probably adding to the problem.

(49:17): [Mary Clare Bietila]  You guys gave a great list in-clinic of a number of different things that were recommended. There's one called Pink that I've used that is wonderful. That is really, really great.

(49:27): [Dr. Stacey Tessler Lindau] That's a lubricant, right, that you use for-

(49:29): [Mary Clare Bietila] Yeah, that's a lubricant.

(49:31): [Dr. Stacey Tessler Lindau] What about moisturizer?

(49:32): [Mary Clare Bietila] So I think for moisturizers, coconut oil's really great. At room temperatures, it's a solid. So I think for storage and keeping it onto your bedside table, that makes life a lot easier. But were you asking about lubricants or moisturizers?

(49:50): [Dr. Stacey Tessler Lindau] Moisturizers.

(49:51): [Speaker 5] Well, I was asking mainly about lubricants.

(49:54): [Mary Clare Bietila] You need both.

(50:13): [Dr. Stacey Tessler Lindau] Yeah. That's good. You just reinforced for everybody, some moisturizers are for maintenance and the lubricant is more for the immediate love interactions. So I will say that the most commonly sold moisturizer is Replens. You've seen ads for it on TV. It's at Walgreens and CVS. I have many patients who try that, use it, and do well with it. Like I said, if there's burning and bleeding, we need to make sure there's not something else going on.

(50:52): While you're passing that, there's the Hyalo Gyn. I don't know if it's pronounced Hyalo Gyn or Hyalo Gyn, H-Y-A-L-O G-Y-N, is the hyaluronic acid-based one. Patients like that.

(51:03): In fact, my patients tend to choose more based on the packaging, because some of them have really wasteful packaging. They give you way more than you need to use for a single application, but then there's no way to save that one. It feels very wasteful. It can be expensive.

(51:16): This is another reason why I feel like a big tub of coconut oil goes a long way. It can be used both as a moisturizer and as a lubricant. There's not a lot of science behind that. This is the art of medicine. But go ahead. You had a follow-up.

(51:28): [Speaker 5] Yeah. So how do we find somebody who is an expert in this area? So I've had a radical hysterectomy as part of my stuff, and so I don't see a gynecologist anymore.

(51:46): [Mary Clare Bietila] Yeah. So sexual dysfunction, I think, is the key phrasing that gynecologist needs to have in their specialty. Is that true? A specialist in sexual dysfunction if that's what we're talking about.

(52:03): [Speaker 5] Well, but she's saying if there's pain and burning and bleeding, then you need an exam? Would I go to a gynecologist for that?

(52:09): [Dr. Stacey Tessler Lindau] So typically I would recommend that you go to somebody who's experienced in pelvic examination. So it may be a gynecologist, it may be a family physician, it may be ... Some internal medicine people focus on women's health and have this training. Somebody who's experienced in doing genital and gynecologic exam is important for you.

(52:32): Even women who've had a radical hysterectomy, the guidelines are still that you have an annual pelvic examination. You may not need a pap smear, which is a screening test for cervical cancer, but you should still have an annual gynecologic examination. That's the American College of OBGYN recommendation

(52:47): [Speaker 5] So would a general OB/GYN be sufficient to have the kind of exam you're talking about?

(52:53): [Dr. Stacey Tessler Lindau] I would certainly start with the person who knows your gynecologic history best. If they feel that they can't identify the cause of the burning, pain, bleeding, they may have a subspecialist to refer you to. There are vulvar specialists. There are sexual medicine specialists like myself. I put up this slide here. It shows you the geographic distribution of experts with the scientific network on female sexual health and cancer.

(53:24): But then the other network I gave you was AASECT, the American Association of Sex Educators, Counselors, and Therapists. They know oftentimes where the local gynecologists are others who have expertise in this area.

(53:37): [Speaker 5] It just feels very overwhelming. After everything that we've dealt with, now I have to go track this down.

(53:46): [Dr. Stacey Tessler Lindau] I know. Your comment is very much appreciated. Honestly, the National Institutes of Health needs to hear from people, from constituents.

(54:02): [Speaker 6] This is actually just a quick informational for everybody. After my transplant, I worked for Pure Romance for a little while because I went to a party and the lady that was there, she had cancer. That's how she got into it was because some of the products that they actually carry for sexual intercourse, they have a natural line that they made for cancer patients that doesn't have any of the additives in it, as well as they also have the dilators, which I got my dilators set from them. I love them.

(54:44): [Mary Clare Bietila] They're like Tupperware for sex toys. Not just for sex toys. Not just for sex toys. Sexual health.

(55:04): [Speaker 9] Touching on the dilators. Pyrex. Awesome. You can put them in a cup of warm water, and with the lubricant, it totally relaxes the muscles. Then you can throw them in the dishwasher. So you don't have all those little lint balls and everything stuffed to the dilators.

(55:22): [Dr. Stacey Tessler Lindau] That's a very good tip. I've not used the glass dilators yet with any of our patients. We always were afraid if we put them in the shoe bag, they would break.

(55:34): It's a big shoe bag. You can't have them very, very small because they would risk breaking. The one thing I want to say as a caveat to that, and I think that's a very nice tip, to get ... So the slippier, the slidier the dilator, the less real life it is.

(55:52): So if the purpose is to dilate to get to the point of penetrative vaginal-penile intercourse, I would recommend at some point switching over to the silicone type dilators. They're a little bit flexible. They produce a little bit more friction, which is closer to real life.

(56:11): So they serve different purposes. Some people may do just fine going from the Pyrex to vaginal intercourse, but that's one of the reasons why I use the silicone type. And some of those can go in the dishwasher, I think.

(56:38): [Speaker 9]  I just want to say that pelvic floor physical therapy is the best thing I've ever done in my life. It was a little weird at first, but ... I see she's a urogynecologist, because I have that little incontinence problem when I laugh or sneeze, too.

(56:56): [Dr. Stacey Tessler Lindau] The pelvic physical therapy can help for both. So obviously a woman who feels she might lose her bladder control or her bowel control during intercourse has another inhibition for intercourse. I mean that can be a real deterrent.

(57:10): The tightness that happens to those muscles around the opening to the vagina can indicate an overall tightness in the pelvic floor. That can actually be a cause of incontinence. We think of incontinence being the result of a lax, loose pelvic floor say in a woman who's had five vaginal births. But actually tightness can also cause incontinence, because if you think about it, the muscles are already stretched as tight as they are, you can't contract them any further.

(57:35): So pelvic physical therapy oftentimes is relaxing that opening muscle to the vagina, but also giving a woman better quality control over her pelvic floor muscles and treats the incontinence along with the pain. I agree with you, it would be impossible for us to help a huge proportion of our patients if we did not have excellent pelvic physical therapists.

(57:54): [Mary Clare Bietila] There's a DVD that you recommended [for pelvic floor physical therapy] that I did at home that is fabulous. You can get it on Amazon. What is that?

(58:02): [Dr. Stacey Tessler Lindau] Ha It Pelvic Floor DVD, yeah. H-A-B-I-T.

(58:04): [Mary Clare Bietila] H-A-B-I-T. I think it's about $20. It's a DVD that walks you through all the exercises you need to do. It's unbelievably helpful.

(58:23): [Speaker 10] I haven't heard you mention vulvar vestibulitis. Could you talk about that, what it is and treatment?

(58:30): [Dr. Stacey Tessler Lindau] Yeah. It's actually a big question and a point of controversy in the field. But what it's meant to indicate is pain around the opening. Remember I showed you, I said the vulvar vestibule were red in those three pictures of graft-versus-host disease. It's pain and redness in that area of the body without other explanation.

So it's actually a term I almost never use because we almost always find an explanation. What it means is there's inflammation around the opening to the vagina that needs a diagnosis and a treatment.

So usually there's a reason for it. Sometimes a biopsy is needed to get to the right diagnosis. But it's not a term we frequently use in our clinics. We can usually identify the underlying cause. Okay, thank you.

(59:16): [Marla O'Keefe]    Closing. Thank you all very much. Thank you Dr. Lindau, Mary Clare.