Women’s Sexual Health after Transplant
Tuesday, April 20, 2021
Presenter: D. Kathryn Tierney PhD, RN, Stanford Health Care (retired)
Presentation is 42 minutes plus 18 minutes of Q & A.
Summary: Stem cell transplantation typically involves chemotherapy and radiation. These treatments, as well as other medications transplant recipients receive, and complications after transplant such as graft-versus-host disease (GVHD), can negatively affect a woman’s sexual health. This presentation discusses a variety of sexual health difficulties that can occur after transplant, and how to manage them.
- Up to 60% of women report loss of interest in sex after transplant, at least for a time, and 76% report pain during intercourse.
- Early menopause is common after transplant, and causes changes in the vagina, such as dryness or thinning of the vagina, and early onset of hot flashes
- Open communication about sexual health between partners and with health care practitioners is important to identify problems and find appropriate treatments.
(05:09) Different sexual difficulties are strongly interrelated, so having one issue is likely to trigger others as well.
(07:06) Early menopause is a common occurrence in transplant patients when women under 40 experience ovarian failure.
(07:47) Treatment also causes vaginal alterations through early menopause that can cause pain and dryness as well as an increased risk of infection.
08:56) High dose chemotherapy and total body irradiation can trigger an abrupt onset of menopause that intensifies symptoms like hot flashes.
(10:42) Emotional impacts of cancer treatment can include depression and body image changes that can decrease self-esteem and as well as sadness over loss of fertility, youth, or femininity.
(14:05) Studies suggest caregivers may experience more stress, depression, and decline in marital satisfaction than transplant recipients.
(15:43) Health providers discuss sexuality only about half the time with their patients and silence is a major barrier to addressing issues of sexual health.
(19:40) The evidence on menopause replacement therapy shows benefits, although decisions about such therapy are complicated and involve several types of therapy.
(25:12) There are ways to address vaginal dryness and painful sexual intercourse through lubricants and other remedies. Such patients may also be screened to detect and treat graft-versus-host disease of the vagina.
(29:44) Studies show distinct benefits for these issues with selected therapies. When combined with psychoeducational therapy, there can be significant improvements in sexual functioning.
Transcript of Presentation:
(00:01) [Mary Clare Bietila] Introduction. Good afternoon. My name is Mary Clare Bietila, and I will be your moderator today. Welcome to the workshop Women's Sexual Health after Transplant. It is my pleasure to introduce to you Dr. Kate Tierney. Dr. Tierney is an oncology clinical nurse specialist who has spent 40 years at Stanford Health Care serving patients and families undergoing stem cell transplant. Her research has focused on health-related sexuality and quality of life after transplant, as well as other survivorship issues. Dr. Tierney has served in leadership positions within the Oncology Nursing Society and the American Society of Transplantation and Cellular Therapy. Please join me in welcoming Dr. Kate Tierney.
(00:51) [D. Kathryn Tierney] Overview of Talk. Thank you, Mary Clare. It's a pleasure to be able to speak with you today. And I want to thank the BMT InfoNet founders, Susan Stewart and her staff for inviting me to be part of this symposium, but more importantly, for the incredible work they do supporting transplant recipients and families every day.
(01:12) So in my presentation, I will talk a little bit about what are some of the sexual difficulties women encounter after transplant and how frequently do these problems occur? How do sexual difficulties impact quality of life? What are some of the causes and risk factors for problems? And what are some strategies to address sexual difficulties?
(01:34) Sexuality is broader than sex. So, the very first take-home message is it's not just about sex. And while pleasurable, satisfying sexual encounters is a goal - an important goal - sexuality is a much broader concept than sex.
(01:50) The World Health Organization views sexuality as a central aspect of the human experience. All individuals have a lifelong need for intimacy, affection, touch, and emotional connection to others regardless of age, sexual orientation, gender identity, state of health, or current relationship status.
(02:15) Gender identity and roles: what does it mean to us to be a man or a woman or a member of the LGBTQ community or body image? How do we view ourselves as sexual beings? How does that influence our self-confidence and our self-esteem?
(02:31) Sexuality is expressed in our appearance, our attitudes, our values, and our roles, and sexual expression is influenced by our age, our developmental stage, cultural norms, past experiences, and relationship with the intimate partner. And cultural norms of course define what is normal sexual expression.
(02:55) So is sexuality important? I think you're here today because it is. We know that the repercussions of cancer-related sexual difficulties invade many areas of life, altering daily function, emotional well-being, sense of self, relationship, and overall quality of life. Sexuality is often expressed within the context of a relationship. So we know altered sexuality after transplant negatively affects the quality of life of not only the transplant survivor, but also his or her intimate partner.
(03:30) Loss of sexual feelings is among the most distressing aspects of cancer therapy. Dr. Carelle did a study and asked individuals what were the 10 most distressing aspects of cancer therapy? And as I reveal these distressing effects of cancer therapies, I want you to think about, do they ring true for you?
(03:47): So the first was effect on family and partner. The second most distressing aspect was loss of hair, fatigue, effect on role responsibilities, effects social activities, and the sixth most distressing aspect of cancer therapy was the loss of sexual feelings. And we know from Dr. Betty Ferrell's work that altered sexuality and family distress exerted the most negative effect on measures of social wellbeing.
(04:18) Sexual problems after transplant can be physical and emotional. So what are some of the causes of sexual problems after transplant? Well, certainly the cancer as well as cancer treatment can cause physical changes impacting sexual functioning. We know emotional distress associated with both the diagnosis and the treatment of cancer is a problem for both the survivor and again, the partner. And this emotional distress can include anxiety, depression, grief, anger, fear, and uncertainty. And we know that effects of cancer treatment are cumulative and include the therapy received prior to and after the transplant. We know side effects and complications of treatment can cause sexual difficulties, and we know that alterations in relationships both during and following treatment can impact sexual functioning.
(05:09) Different sexual difficulties are strongly interrelated. So what are some of the types of sexual difficulties women report? Well, loss of interest in 51% to 60%, painful sexual intercourse in up to 76% of women, arousal difficulties in up to 52%, difficulty with orgasm in 42% to 47%, less sexual activity in 57% to 68%, and sexual dissatisfaction in up to 52%.
(05:36) What I want you to keep in mind as you look at the frequency of these problems is that this information was derived mostly from small studies involving primarily white, married, and heterosexual women. There has been little to no focus on the LGBTQ individual, or individuals of diverse ethnic or cultural backgrounds.
(05:58) And the other thing to keep in mind with these sexual difficulties is that they're strongly interrelated. So if a woman is experiencing pain with sexual intercourse, she will quickly lose interest in having sex because nobody looks forward to a painful encounter. Likewise, if sexual intercourse is painful, it's going to be a difficulty to achieve orgasm or climax. So there's a strong interrelationship between these problems.
(06:26) Cancer and its treatment affects multiple dimensions of sexuality. Sexuality is a very broad concept with multiple dimensions, including physical, social, and emotional. And cancer and the treatment of cancer can impact all of these dimensions. And it's not only the sexual difficulty per se, say lack of interest, that is distressing, but that lack of interest in sexual activity also is accompanied by additional emotional distress and particularly depression and anxiety. And because these dimensions are intertwined, there is rarely one cause of sexual difficulties. Hence there will be rarely one solution.
(07:06) Physical dimensions include premature menopause from chemotherapy and radiation. So physical dimension of sexuality. So menopause is due to the loss of ovarian function, including hormone production and fertility from high dose chemotherapy and total body radiation. So women under 40 will experience premature ovarian failure where they go into menopause early.
(07:26) Normal age for menopause in the United States is about the age of 50, 51. So a woman, if she enters menopause before 40, is premature ovarian failure. And women who are about 42 to 50 in the perimenopausal phase of life will have a more abrupt transition into menopause from the high dose chemotherapy radiation.
(07:47) Treatment also causes vaginal alterations through early menopause. So menopause causes vaginal alterations, including the vaginal tissue become thinner, less lubrication occurs, and there's an increased risk of infections, both vaginal and urinary tract infections. And the vaginal dryness and pain can be sufficiently severe to interfere with daily living activities such as exercising, walking, sitting, and routine pelvic examinations.
(08:11) And we also know that radiation and chronic graft-versus-host disease contributes to vaginal dryness, adhesions, excuse me, and vaginal narrowing. Other physical problems that contribute to sexual difficulties including fatigue, which is fairly universal and a long lasting problem for survivors. And contrary to common sense, the best treatment for fatigue is actually exercise. We also know there's changes in appearance that contribute to sexual problems, and many medications can interfere with sexual activity, including antidepressants, antianxiety drugs, and pain medications.
(08:56) High dose chemotherapy and total body radiation can trigger an abrupt onset of menopause that intensifies symptoms like hot flashes. So the transition into menopause is different for women who receive high dose chemotherapy or radiation as is often used to prepare people for transplant. So a normal menopause due to aging includes a perimenopausal state that can last for six or more years. And during that time, there's a slow decline in the amount of hormones produced by the ovaries. With high dose chemotherapy and/or total body radiation, that induces an acute or almost immediate loss of hormones. So the transition is quite abrupt. And symptoms can include hot flashes, which if they occur at night, we call them night sweats, vaginal changes, which I mentioned earlier, dryness, increased risk of infections, loss of elasticity and lubrication, trouble sleeping, mood swings, depression, changes in appearance, osteoporosis or bone loss.
(09:51) So hot flashes are powerful. The skin temperature rises about seven to eight degrees Fahrenheit. There's no internal temperature rise, but the skin temperature rises seven to eight degrees Fahrenheit. So imagine we were having this conference in a conference room and we were all quite comfortable. And within seconds, somebody raised the temperature of the room eight degrees. We would all be very uncomfortable.
(10:19) And hot flashes are embarrassing. You sort of hope that when your face is flashed and your ears are turning red and there's beads of sweat or perspiration in your nose, that nobody's going to notice. I happen to have a good friend that liked to point them out to me every time she noticed. And so they're embarrassing and they do also contribute to sleep problems.
(10:42) Emotional dimensions include depression and body image changes that can decrease self-esteem. There's emotional dimensions to sexuality or psycho-social image dimensions. Up to about 50% of transplant recipients report depression, and depression increases the risk of sexual difficulties by about 50%. There are body image changes, which include the altered view an individual holds of themselves as a sexual being. So it includes not only what others see, but our internal view of ourselves. And that internal view if it's altered in a negative way, can decrease our self-confidence and self-esteem.
(11:17) In a study by Humphreys, over half of the women and men reported feeling unattractive after their transplant. And there's a very strong relationship between sexual problems and self-perceived unattractiveness related to body image changes.
(11:35) There was a movie quite some time ago that many of you may have seen called Dying Young. And it's a movie where Julia Roberts, with no experiences as a nursing assistant, is hired to be a nursing assistant for a young wealthy man. And he of course falls in love with Julia Roberts and he stopped his chemotherapy at one point in the movie. And I don't know if you remember why, but he stopped his chemotherapy so that she could see him with hair.
(12:01) The body image is very, very powerful. And there can be both immediate and late body image changes related to transplant. There can be hair loss, weight changes, scars, skin changes, and chronic graft-versus-host disease.
(12:16) Menopause can have emotional dimensions like loss of fertility, youth or femininity. And menopause certainly causes changes in the physical dimension of sexuality, but it also has emotional dimensions. Menopause signifies our loss of fertility and our loss of youth and femininity. And infertility also, excuse me, alters one's view of masculinity and femininity and can be associated with emotional distress in those who have not completed their childbearing, which can include depression, anger, and grief.
(12:50) Intimate partners often must juggle multiple roles as caregiver and lover. And we know there's a social dimension of sexuality. The intimate partner, who's often the caregiver, may also be and is likely experiencing their own anxiety, maybe depression, fears, concerns. And if they are the caregiver for the transplant recipient, they're often fatigued. And all of those things can contribute to sexual dysfunction in the intimate partner.
(13:12) And we don't really know a lot about the role changes that occur during and after treatment. So I was pleased to see this topic addressed in yesterday's program, but what is it for couples to go from a lover to a caregiver role and back to the role of lover, and similarly for the patient go from being a lover to a patient and back to lover? And that can wax and wane. And that transition can happen many times as the illness progresses.
(13:40) Single individuals may face additional challenges. And there are unique challenges for individuals not in a relationship but desiring one. Single individuals report fearing dating and rejection by a new partner. And in couples who have not started or completed childbearing, infertility can lead to relationship distress. And we know that distress in relationships often leads to sexual problems.
(14:05) Studies suggest caregivers may experience more stress, depression, and decline in marital satisfaction than transplant recipients. So Dr. Bishop did a study looking at 177 transplant recipients and caregivers, and on many measures of social wellbeing, and found that caregivers compared to the transplant survivor experienced less social support, more loneliness, less marital satisfaction, less spiritual wellbeing, and less post-traumatic growth. So you've all probably heard of post-traumatic stress, which is emotional stress following a traumatic event, but there can also be post-traumatic growth, so that after a traumatic event, people find a new appreciation for life, new meaning, and new purpose. So they grow from that traumatic event.
(14:49) So in this study, transplant survivors experienced more post-traumatic growth than the caregivers. And Shelby Langer's work looked at marital satisfaction scores over time. And spousal caregivers in her studies had greater levels of depression and anxiety at six and 12 months post-transplant than the survivor, and spousal caregivers, particularly female caregivers, had a decline in marital satisfaction scores at one year compared to pre-transplant scores while the transplant survivors had stable scores. And there have been many, many studies that have shown that social support facilitates healthy adjustment after transplant. So if problems arise in the relationship due to sexual difficulties, the entire recovery process can be jeopardized.
(15:43) Health providers discuss sexuality only about half the time with their patients. Oh my God, did my patient just ask me about sex? So one study found that only 48% of healthcare providers discuss sexuality prior to transplant, which is really, really distressing because we know if we prepare individuals for changes that may occur after transplant, it facilitates a healthier adjustment. And only 53% discussed sexuality post-transplant. And that's equally distressing because we know a conversation with a healthcare provider can be therapeutic.
(16:22) There is little research on post-transplant sexual health to guide practitioners or patients. So there are many challenges in addressing sexual health. And the principle challenge is there's limitations to what is known and understood about sexual health post-transplant. There are no established guidelines as to what is safe in terms of sexual activities or unsafe. There's no systematic approach to assessing sexual health. There are no well-researched interventions, and there are no well-established guidelines for communicating with partners or potential partners regarding health history and the impact on sexuality and fertility.
(16:57) Additionally, there is limited guidance on when survivors may engage in sexual activity. There's a limited network of healthcare providers to provide expertise, support, guidance, and therapeutic interventions. There's limited literature on the body image changes and how to improve body image or the impact of infertility, and little understanding of the impact of role changes in relationships.
(17:21) There have been no, and will not likely be, large prospective randomized trials comparing interventions to address sexual health, communication, and body image. And I believe if we wait for these randomized trials, survivors and caregivers will continue to struggle to maintain sexual health and quality of life. So it's my position that we need to take what we currently know and apply it as best we can. So my presentation on interventions is based on clinical experience, the cancer and transplant literature, and interventions that have been employed in a healthy population.
(17:59) A major barrier is silence between patients and practitioners as well as intimate partners. So we know that one of the biggest barriers to addressing sexual health is silence. So healthcare providers may feel personal discomfort addressing sexuality, lack of education - sexuality is not routinely covered in medical education or nursing education or social work education. Providers may lack knowledge of resources, and they have limited time in clinic visits.
(18:26) The transplant survivors may not bring up sex or sexuality because they fear being dismissed or they might fear they'll make their healthcare provider uncomfortable, or that there are no treatment options available.
(18:40) And the intimate partner or the couple may need help navigating sexual relationships after transplant. They may have difficulty establishing or re-establishing intimacy or difficulty communicating. Dr. Langer's work has shown that couples may refrain from talking about treatment-related fears and concerns to minimize the stress. And this avoidance and non-disclosure is maladaptive.
(19:06) It's probably important to coach single individuals to develop a plan for disclosure of their experience with cancer with new partners so they have a plan going forward as they try to engage in new relationships. And Dr. Zhou has suggested that that conversation about the health history and sexual concerns and fertility needs to happen early in a new relationship because if avoided at the beginning, it's going to be really awkward at a later point and may in fact destroy some trust that's been built in that new relationship.
(19:40) The evidence on menopause replacement therapy shows benefits. So menopause replacement therapy is given to women after transplant to compensate for the premature loss of hormones. It is recommended for women under the age of 40, and it's also recommended that it should be initiated early after transplant. Dr. Syrjala's work has shown that women who had not started menopause replacement therapy by a year post-transplant experience distressing sexual dissatisfaction at three years even though they were taking hormones by the three-year mark.
(20:15) So menopause replacement therapy can be given to improve interest, arousal, and decrease painful intercourse. And the goal is tailored therapy aimed at symptom relief. Let's start with the lowest dose possible that provides relief. And a study by Piccioni and others showed that menopause replacement therapy decreased hot flashes, mood swings, trouble sleeping, and vaginal dryness by more than 50% within a month of beginning therapy. So it is very effective and a pretty quick therapy.
(20:53) Decisions about hormone therapy are complicated and involve several types of therapy. Should I take hormones? This is a pretty complicated question. And the risks and benefits must be individualized based on the severity of the menopausal symptoms, underlying disease status, and contraindications. So it's important to think about health history. Do you exercise? Are you overweight? Your diet, your smoking history, a family history of cancer or cardiovascular disease.
(21:20) And there are different types of menopause replacement therapy - oral, transdermal or through the skin and vaginal.
(21:28) Oral therapy will most likely include a combination of estradiol and progesterone if the woman has an intact uterus, and it's important to start with the lowest dose possible that provides symptom relief.
(21:41) The transdermal route is a good option because it avoids the blood circulating through the liver, which reduces the risk of clots and strokes compared to the oral route.
(21:54) And vaginal estrogen, likewise, avoids liver circulation and is known to restore health and elasticity of vaginal tissues. And research has indicated that low dose local vaginal estrogen treatments, including creams, ovules, and rings are associated with very negligible elevations in estrogen levels in the blood. So they're considered to be safe.
(22:21) Non-hormonal treatments for hot flashes can also help. There are non-hormonal therapies for hot flashes. Antidepressants in placebo-controlled trials reduced hot flashes by over 50%, also reduced sleep disturbances, mood swings, and resulted in increased energy. Antidepressants had an added benefit in that they may also improve interest in sexual activity. And Effexor, one antidepressant, was shown to reduce hot flashes by 60%.
(22:49) Gabapentin, which is an anticonvulsant, has shown efficacy in reducing hot flashes, as well as the anticholinergic drug oxybutynin, which decreases hot flashes by about 30%.
(23:04) Vitamin E, soy, black cohosh and other homeopathic regimens have not been rigorously tested. And there are concerns with some of these agents regarding drug interactions as well as the inability to ensure proper dosing that can limit the recommendations for these agents in hot flashes.
(23:23) Dietary changes. It's important to pay attention to what triggers a hot flash. It can be stress, but it also can include things like coffee and alcohol. Exercise, acupuncture, and reflexology have failed to demonstrate a consistent improvement in symptoms, but can be effective if used consistently and are associated with minimal risks. So they're worth trying if you want to avoid hormones.
(23:55) Androgen therapy may be another option. Androgen therapy. In men, testosterone is strongly linked to sexual desire, but the role of androgens and particularly testosterone in female sexual desire is not well understood. In select post-menopausal women, a combination of testosterone and estrogen significantly improved desire and the number of satisfying sexual episodes. But it took about two to three months before those benefits were seen.
(24:23) And it's important to note that there's no androgens therapies, particularly testosterone therapies, that are FDA approved, Food and Drug Administration approved for treating sexual problems. The exception is dehydroepiandrosterone or DHEA, which is an FDA approved adrenal androgen. And it's known that it can stimulate local tissue synthesis, vaginal tissue, production of estrogen and testosterone without increasing blood levels. It has been effective for some women with painful sexual intercourse. There are side effects to androgen therapy that may include increased facial hair or acne that may not be desirable for women.
(25:12) There are also ways to address vaginal dryness and painful sexual intercourse. Vaginal dryness and painful sexual intercourse. We've already talked about menopause replacement therapy, but the message is also to stop having painful sex and take some time to work to restore vaginal tissues to a healthy condition. So again, menopause replacement therapy can be effective.
(25:32) Osphena, which is a non-estrogen oral pill that requires a prescription, is indicated for painful sexual intercourse. Prolonged foreplay so that you're very aroused and there's more lubrication. Self-stimulation or masturbation can improve a woman's confidence or her sexual response. Pelvic floor exercises can promote pelvic relaxation and decrease painful sexual intercourse and requires a referral to a specialized physical therapist. Assume a position that allows you to control both the rate and depth of penetration. Try non-penetrative sexual activities and explore other body parts such as the thighs or the breasts.
(26:15) Distinguishing vaginal dryness and vaginal lubricants. I want to make a distinction between vaginal dryness and vaginal lubricants. Vaginal moisturizers are used to improve vaginal tissue health. And there are three listed there, Hyalofemme, Ovestin, and Replens. There are many others. If you Google vaginal moisturizers on Amazon, I think it comes up with about five or six pages.
(26:43) There was a randomized controlled study between Hyalofemme and Ovestin, and they were pretty much equally effective. Ovestin however is a steroid and a weak estrogen, which may not appeal to all the women. And clinical trials have also shown that Replens applied three times per week can decrease dryness, soreness, irritation, and painful sexual intercourse.
(27:08) Vaginal lubricants are intended for use during sexual activity to reduce pain and irritation. And they can be water or silicone-based. Certain ingredients in water or silicone-based products include glycerin, perfumes, and flavors or preservatives, and can have the potential to cause irritation. So you may have to try several products before you find the proper one for yourself. Pure oils such as olive oil or coconut oil can also be used as a vaginal lubricant. And a more novel approach being explored for vaginal dryness is CO2 laser therapy in post-menopausal women.
(27:51) Vaginal dilators are another option. So vaginal dilators have gone mainstream because Gwyneth Paltrow is now selling vibrators. So vaginal dilators are used as a preventative strategy for managing... Excuse me. Dilation is used as a preventative strategy for the management and reduction of pain during sex and pelvic exams. The dilator should be lubricated and inserted into the vagina just to the point of mild discomfort. And you need to lie for 10 to 15 minutes with that dilator in place, and you should do that three to four times a week. So it takes a pretty big commitment. And over time, the size of the dilator and the depth of insertion can be increased.
(28:38) Vaginal chronic graft-versus-host disease requires screening and can be treated. We know that approximately 29% to 49% of women will experience vaginal chronic graft-versus-host disease. Typically, the onset is seven to 10 months post-transplant but late vaginal chronic graft-versus-host disease can occur. If you have chronic graft-versus-host disease of skin, mouth, liver, or GI tract, you should be screened for vaginal chronic graft-versus-host disease.
(29:04) Zantomio did a study looking at the prevention of chronic graft-versus-host disease of the vagina and that prevention strategy included topical estrogen, menopause replacement therapy initiated early, vaginal dilatation in the absence of sexual activity, as well as patient education and regular gynecological exams. For women that had already developed vaginal chronic graft-versus-host disease, treatment included the addition of topical steroids, topical cyclosporine, and continued vaginal dilatation. And in 15 of 28 women treated, there was complete resolution of symptoms.
(29:44) Studies show benefits with selected therapies
This study reported by El-Jawahri and others from Boston came out recently and they screened survivors who were more than three months post-transplant for sexual problems. And they asked, do you have sexual problems? And are these problems causing you distress? And the results indicated that 75% of women had pain, 38% had low interest in sexual activities, 33% had problems with graft-versus-host disease, and 25% had psychological issues. And they initiated therapy for two to six months and vaginal estrogen in 67%, dilator therapy in 63%, lubricants in 58%, and psycho-education. And psycho-education were strategies aimed at reducing depression and anxiety and addressing body image concerns and loss of intimacy. And they had significantly improved sexual functioning and the results indicated increased sexual activity, increased interest in sex, increased satisfaction, increased vaginal lubrication, decreased pain, decreased depression, and improved quality of life. So quite an effective study.
(30:55) Sensate focus exercise were developed by Masters and Johnson in the 1960s. And these are touching exercises. And the goal is to establish intimacy, not to have sexual intercourse. And the idea is to enjoy the experience of touching and intimacy without worrying it will lead to sexual intercourse, which may cause pain. So this is full body touching every two to three days with the hands and fingers only, and initially, no touching of the chest or the genitals. And there's no talking. Again, the idea is to establish intimacy, which we know can reduce emotional distress.
(31:37) Open communication and psycho-educational therapies have shown improvements in sexual functioning. So here is Emily Morse, who has a degree in psychology and graduated from the Institute of the Advanced Study of Human Sexuality in 2012, the Dr. Ruth of a new generation. She has a radio show, a podcast, and a master class, and her focus is to remove the stigma about sex. Her efforts focus on behavioral therapies that encourage communication and expression of fears related to feeling unattractive or rejected and directly addressing relationship conflicts. And she says, the more we talk about sex, the better sex we are going to have.
(32:13) Female sexual health and wellbeing is strongly linked to emotional and social dimensions of sexuality. And psycho-educational therapies have shown improvements in sexual functioning and quality of life. And these include things like mind-body interventions, meditation, yoga, cognitive behavioral therapy where you reframe the experience, couple-based interventions regarding communication and counseling, and online formats to address sexuality and relationship issues. And all have been shown to be effective.
(32:48) Talking with healthcare practitioners can identify treatment options and resources that promote healthy sexual adjustments posttransplant. So in summary, I hope you feel empowered to talk with your healthcare provider. Ask for guidance on sexual activity, ask for a referral, seek help early. We know that a conversation with a healthcare provider can be therapeutic.
(33:04) Alterations in sexual health may be physical, emotional, or social with dynamic interactions between these dimensions. Treatment options are available and effective treatment is a combination of education, support, and symptom management.
(33:20) And predictors of a healthy sexual adjustment post-treatment included good relationship before the transplant, a satisfying sexual relationship before the transplant, a partner who desires sex and support from the partner.
(33:35) And there are many, many resources available. I want to add one to this that I failed to put on the list, which is the North American Menopause Society, which actually keeps a referral network of menopause specialists. CancerCare offers counseling with a social worker in case management to overcome barriers to access, and they provide workshops and printed educational materials. So there are many, many resources available to you. And at this point I will take questions.
(34:09) [Mary Clare Bietila] Q & A. All right. Thank you so much for this wonderful presentation. As you were reminded at the beginning, there is a chat box. You're welcome to put any questions you have as an audience member into that box. We will not be reading anyone's names. So this is anonymous.
(34:25) All right. So the first question that I have is if post-transplant intercourse becomes painful due to loss of vaginal lubrication in a post-menopausal woman who didn't have an issue with this before, okay, the ability for the vagina to lubricate during sex, will this improve naturally over time? It sounds like they were already menopausal before their transplant and then the transplant exacerbated some issues that they're just curious if they will go back to kind of that baseline.
(35:02) [D. Kathryn Tierney] The studies suggests that sexual problems such as vaginal dryness, loss of lubrication will not improve with time. You need to intervene. And menopause replacement therapy is one. If you were already post-menopausal before transplant, you may think about other strategies for vaginal lubrication. So try vaginal moisturizers as the beginning and then lubricants during sexual activity to help restore some of that moisture.
(35:32) [Mary Clare Bietila] Great. Okay, our next question is, can you give some examples of good over-the-counter vaginal moisturizers? So this would be for daily use.
(35:43) [D. Kathryn Tierney] Replens is one that I have had the most experience with in terms of recommending to women and it's available over the counter at any drug store. You use a vaginal applicator and lubricate three to four times a week at bedtime. And that will restore some of the moisture. There are also pH balanced gels that can be bought at the drug store. And again, if you Google this or search on Amazon, you'll come up with a list of five or six pages of different products that are available.
(36:21) [Mary Clare Bietila] Wonderful. All right, our next question is, it's from a woman who had a transplant at the age of 39. She's currently five months post-transplant and is interested in learning more about menopause replacement therapy. Unfortunately, they have two blood clotting disorders. So there's some concern there and they let us know that they're regularly exercising and hiking, have a very supportive partner. They want to know what are the options for someone like her?
(36:54) [D. Kathryn Tierney] So if the issue is mostly hot flashes, you might think about an antidepressant. They can be pretty effective. Antidepressants, again, have the added benefit of increasing interest in sexual activity. If the problems are related to vaginal dryness or loss of lubrication, then I would, again, with the previous question, I would start with a vaginal moisturizer on a regular basis and lubricants during sexual activity. So there are lots of strategies besides hormonal therapy that can be used.
(37:28) And I would go to the North American Menopause Society website. They have a list of practitioners that specialize in the treatment of menopause and it'd be worth having at least one consultation with that kind of expert to go through the risk factors and the family related to clotting disorders, et cetera, and what options are out there. And Osphena, which does require prescription, is a non-estrogen product that can decrease painful sexual intercourse.
(38:02) [Mary Clare Bietila] Okay. And my understanding is, I think you also brought this up in the presentation. There's a difference within the body if you're taking hormone replacement topically or orally. So that's another factor. Is that correct?
(38:16) [D. Kathryn Tierney] That's correct. So we know that both topical administration through the skin as well as vaginal estrogen is less likely to be absorbed. I shouldn't say less likely. The absorption into the blood is negligible. So it's considered safe.
(38:32) [Mary Clare Bietila] Okay. All right, are there any pamphlets or guides to give to my doctors? So this person wants to start the conversation maybe with their gynecologist, maybe with their oncologist. How do we guide them?
(38:49) [D. Kathryn Tierney] Yeah, that's a good one. If you... I meant to write down a specific article and I forgot to do it, but there are some of those resources that you can go to and that slide will have information that you can take directly to your physician and ask them. Sorry, I didn't write down that specific article. But in addition to the North American Menopause Society, there's also a European society that has specific recommendations for people that have had cancer in the past.
(39:26) [Mary Clare Bietila] Okay. All right, our next question is, do you recommend having your sex hormones levels tested. How often?
(39:35) [D. Kathryn Tierney] Hormonal testing is a pretty complicated issue. Certainly, if you're not sure if you're in menopause and you're trying to make decisions about birth control because we do recommend birth control until you're off all medications related to transplant, even though we anticipate that the majority of women who've had high-dose chemotherapy or radiation are infertile, then we can test your hormone levels and it would include estradiol, anti-Mullerian hormone, follicle-stimulating hormone, and luteinizing hormone. And that can determine whether you're truly menopausal so that you can make the decision about using birth control or not. Outside of that, I don't know if there's any true benefit in testing hormone levels over time.
(40:30) [Mary Clare Bietila] Okay. All right. Thank you. Are there essential oils or other natural therapies that can help with hot flashes? How do I choose a brand?
(40:43) [D. Kathryn Tierney] So all the black cohosh or ginseng or rose tea are all recommended if you search them on the internet, but they have not been rigorously tested. And because herbal supplements and vitamins included are not regulated in terms of manufacturing, each product can have very different doses and can vary lot to lot. So it's really hard for practitioners to make recommendations on those products, but you can try them and see what works for you. The one that has probably the strongest evidence is black cohosh, but it's important to keep in mind that that can have drug interactions. So if you're on other medications, you'd want to talk to your healthcare provider before you start taking those medications.
(41:39) Oh, wait. I did find the other... The British Menopause Society has specific recommendations on women with premature ovarian failure. So that's another resource, the British Menopause Society.
(41:56) [Mary Clare Bietila] Great. So you've talked a little bit about menopause for folks who are under 40 and folks who are over. Going into menopause so quickly due to the high dose chemotherapy, is it much different than a regular menopause? This is coming from a 40 something person.
(42:18) [D. Kathryn Tierney] It is in that it's more abrupt and the symptoms can be more severe. So literally, you go from having hormones one day to not having them the next. And so there's a lot of tissues in our body that are dependent on estrogen, our skin, our breasts, our vagina, and our bones. And so there's changes in our appearance, changes in the shapes of our breasts, and we talked about vaginal alterations. So it's more abrupt and the symptoms tend to be more severe.
(42:52) [Mary Clare Bietila] Okay. And do they last an equal amount of time or is it because it's... is it over quicker? Does it last longer? Do we know anything like that?
(43:01) [D. Kathryn Tierney] No, I have not read that. We know that the perimenopausal transition for most women is about six to 10 years. So the ovaries or the hormones slowly decline and you experience the symptoms over that six to 10 year period. Some women continue to have hot flashes even much longer than that. So I've not read in the literature whether, even though the symptoms are more abrupt and severe, whether they last longer. 10 years already seems like a long time for me.
(43:37) [Mary Clare Bietila] Yes. Yes, it does. Yeah, our next question is it seems like vaginal GVHD symptoms are very similar to the symptoms like dryness and pain that many women are experiencing with the onset of menopause so quickly. How do you know if it's GVHD or just normal things?
(44:00) [D. Kathryn Tierney] You are absolutely correct. The symptoms are very similar and it really requires a vaginal exam to look. And there are characteristic features that distinguish changes of the vagina that are due to chronic graft-versus-host disease. So if you experience chronic graft-versus-host disease, particularly of the skin or the mouth, you should be assessed for vaginal chronic graft-versus-host disease. And in fact, I think in practice, vaginal graft-versus-host disease is often missed because people aren't assessing for it.
(44:38) [Mary Clare Bietila] And so what's the type of specialist who would be treating vaginal graft-versus-host?
(44:45) [D. Kathryn Tierney] Most of your transplant centers either have the capacity to treat it themselves, or they've hopefully developed a network with gynecologists to focus on that specific issue.
(44:59) And I think one of the resource slides that were shown before my presentation, they now have BMT InfoNet now has a list of chronic graft-versus-host disease specialists. So that might be a place to start as well.
(45:14) [Mary Clare Bietila] It sure is. And just to remind folks, the slides from this presentation will be available for you to download as well as two hours after this broadcast, you'll be able to watch the presentation and hear us again. All right, our next question is if you're already using estrogen cream, can you also use a moisturizer?
(45:36) [D. Kathryn Tierney] Yes. You would and apply them at the same time though.
(45:42) [Mary Clare Bietila] Okay. All right, the next question is I recently heard about Ohnut. Can you explain what that is? My recollection of what this is from a previous workshop that we held is that it is a device that would go on the base of the penis so that your sexual activity would be not as deep and possibly not as painful.
(46:24) [D. Kathryn Tierney] Oh, thank you for sharing that. I'm not familiar with it. There is a device called the Eros which attaches the clitoris to help increase blood flow and make the clitoris more sensitive for women that are having problems with orgasm, but I had not heard of the Ohnut. So thank you for that information.
(46:48) [Mary Clare Bietila] That's great news. Okay, I'm curious how do you start the conversation with your partner? And what can be their role in your treatment?
(47:00) [D. Kathryn Tierney] Yeah, I think in my ideal world, before transplant, the couple is presented with information about infertility and potential changes in sexual functioning. So they both hear the same information. And that can do... That pre-conversation can do a lot of things. It can enlist the partner support, it can help him or her appreciate the changes that are coming and improved communication with the couple. And if that doesn't happen with a provider pre-transplant, you can talk to one of your favorite nurses and say, "I don't know how to start this conversation with my partner. Can you have this conversation when we're both in the room with us?" And so then it puts the onus on the nurse to bring your partner into that discussion without you having to directly initiate it.
(47:54) But communication for couples is tough and there's this push, pull in couples, right? If the partner doesn't want to say, are you interested in sex because they don't want to push it too far or too soon, and the transplant recipient can interpret that as, oh, they're not interested in me. I'm no longer attractive. So it's a really complicated little cycle. And so if you can somehow bring your healthcare provider into that conversation to talk to the two of you, that may be one strategy to open up the dialogue.
(48:26) [Mary Clare Bietila] That's a great suggestion. All right, our next question is, it sounds like vaginal pain with intercourse is very common post-transplant. This person is five months post-transplant and definitely having pain with intercourse. This individual is 52 and was already post-menopausal when they had experienced loss of lubrication and some pain previously before transplant. Is it much more significant... It is much more significant now. Does this indicate GVHD or is it just typical following transplant?
(49:03) [D. Kathryn Tierney] I think it could be chronic graft-versus-host disease. So it's certainly worth being assessed for that, but it also could... Even at 51, you probably still... Or 52, I'm sorry, you could have still had a little bit of estrogen circulating. We do make a little bit of estrogen in our fat tissue, so we never are sort of completely absent from estrogen, but transplant may have altered that balance a little bit. So it could be just continued issues around menopause. It could be chronic graft-versus-host disease and it's worth having an assessment, particularly if you have other symptoms of chronic graft-versus-host disease.
(49:41) [Mary Clare Bietila] Okay. All right, this next question is about Estrace cream, which is hormone replacement cream. They've been using this cream for a number of years more recently, three times a week. They're concerned is this an overuse and is it appropriate to continue indefinitely?
(50:00) [D. Kathryn Tierney] I think I've not read that you shouldn't continue it, so I don't think there's an issue with continuing it if it's useful to you.
(50:10) [Mary Clare Bietila] Okay. Yeah, I think for those of us... I'm a younger survivor. I think about these things are often prescribed to people who are in their 50s or 60s, but if you're in your 30s and you start using these treatments, what is that? There's not a lot of studies I imagine about that very long-term use.
(50:30) [D. Kathryn Tierney] There isn't, but remember in the women under 40, really under 50, if it hadn't been for the high dose chemotherapy and their transplant, they would still have hormones. So they were meant to have hormones that entire time. So we get really scared about hormones after the Women's Health Initiative study was published about 15 years ago about the increased risk of strokes and clots and heart disease. And as providers have looked in more detail about that information, there are women that certainly are at higher risk for those complications, but there are women that are not. And so again, the choice of hormone replacement therapy is really complicated and it has to include a really detailed individualized approach, including the health history, contraindications, et cetera. So it might take time to find a provider who's going to give you that kind of time to really sort through your particular circumstances.
(51:31) [Mary Clare Bietila] Yeah. And it sounds like everyone's their own best advocate. And if you can come prepared reading through these websites and things like that so that you know the questions that could come up in the questions you should ask, you're going to have a better experience. All right. So this is going to be our last question. This person is three years out from transplant and was put on steroids six months ago to help the body produce hormones. The steroids did not help. They're curious about natural hormones. Are they safe to take?
(52:14) [D. Kathryn Tierney] It depends on a lot of factors and it also depends on the type of synthetic hormone that you're thinking about taking. So that probably is a better question for your provider that knows more about your specific circumstances.
And also just the term natural hormones can mean so many different things. Like are you going to a compounding pharmacy? Are you getting this from your gynecologist? Like there's a lot to be tackled there. And anything over the counter, things like that should be talked about with your gynecologist or oncologist.
(52:51) [Mary Clare Bietila] All right, so on behalf of BMT InfoNet, we are running out of time. And we want to thank our partners and thank you Dr. Tierney for your very helpful remarks. And thank you to the audience for your fabulous questions. And we did not get to all of them, but we will see if we can get some answers after the broadcast. Thank you all so much and have a wonderful afternoon.
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