Webinar: Intimacy Redefined: Navigating Sexuality During Bladder Cancer Treatment

April 21, 2025

Bladder cancer treatments such as chemotherapy, surgery, and radiation can profoundly impact physical and emotional aspects of sexuality, posing challenges for patients and their partners. Daniela Wittmann, PhD, LMSW (University of Michigan), explains the common concerns, effective communication strategies, and resources to help patients learn how to address sexuality as part of holistic cancer care.

Year: 2025

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Intimacy Redefined: Navigating Sexuality During Bladder Cancer Treatment. Part 1

Transcript (PDF)

Intimacy Redefined: Navigating Sexuality During Bladder Cancer Treatment. Part 2

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Intimacy Redefined: Navigating Sexuality During Bladder Cancer Treatment. Part 3

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Intimacy Redefined: Navigating Sexuality During Bladder Cancer Treatment. Part 4

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Full Transcript on Intimacy Redefined: Navigating Sexuality During Bladder Cancer Treatment

Patricia Rios:

We are kicking off our 2025 webinar series with an amazing presentation titled Intimacy Redefined: Navigating Sexuality During Bladder Cancer Treatment. There is no argument that bladder cancer treatment such as chemotherapy, surgery and radiation can profoundly impact physical and emotional aspects of sexuality, posing challenges for patients and their partners. Today, Dr. Daniela Wittmann will lead us into an engaging discussion on the intersection of cancer care and sexual health. Specifically, Dr. Wittmann will discuss common concerns, effective communication strategies and resources to help you or a loved one navigate these changes.

Let me tell you a little bit about our amazing speaker. Dr. Wittmann is a clinical associate professor emerita at the University of Michigan’s Department of Urology. She’s a psychotherapist, educator and researcher. She was a lead faculty in developing the Brandon Prostate Cancer Survivorship Program and is currently the associate director of the Weiser Center for Prostate Cancer at the University of Michigan. She’s certified as a sex therapist and sex therapy supervisor by the American Association of Sexuality Educators, Counselors and Therapists. Dr. Wittmann has published research reviews, opinion articles and chapters on sexual issues in cancer and urologic diseases.

Dr. Wittmann, it is an honor to have you here with us today. I will now turn over the screen to you and ask our participants to please use the Q&A button to post your questions throughout the presentation. We’ll address those at the conclusion of Dr. Wittmann’s presentation.

Dr. Daniela Wittmann:

Well, thank you very much for the kind introduction, and I want to say that I’m so happy to be here to meet with all of you. For some of you who were at the Philadelphia Patient Summit, I was unable to come because I was sick. So this is my opportunity to meet with you and with anybody else who decided to join this webinar. And thank you BCAN for putting a spotlight on sexuality in bladder cancer.

I don’t have any disclosures for this presentation and I’m going to start with a few statistics.

So the American Cancer Society publishes statistics on the number of cancer survivors in the United States. They do it about every five years or so. They publish on incidents and mortality every year, but this is a more rare event. So the data we have is from 2019. And as of 2019, there were over 620,000 male bladder cancer patients living in the United States, or bladder cancer survivors, I should say, and over 200,000 female bladder cancer survivors. So that’s a pretty big number and I would expect that it’s probably a large number today.

Dr. Daniela Wittmann:

Every now and then too, the people who treat and study bladder cancer, they look at outcomes, and most of them they look at oncological outcomes, but sometimes they also look at the side effects of treatment. And this is a study that was conducted in Europe and they looked at the kinds of functioning, the kinds of psychological consequences of bladder cancer treatment to find out what were people coping with in survivorship, what were people bothered by. And as you can see, the descriptions of the colors of the TURBT and TURBT plus is related to noninvasive bladder cancer. And the cystectomy colors are related to patients where their bladder are removed. And then there is one color bar that is devoted to people who underwent radiation.

And what you will see when I click was that the major concerns that men reported were sexual problems. The same was for women. Sexual intimacy stood out as well, as did sexual enjoyment. And I should add that when the female patients were filling out these questionnaires, there was a smaller number willing to answer those questions. So that makes the results a little bit less solid than for the male patients, but I think it’s true nevertheless. It’s sexual problems are something that patients identify as something that bothers them in survivorship.

Dr. Daniela Wittmann:

Now, the unfortunate thing is that there’s a mismatch between patients and their healthcare providers. Over 80%, 84% of patients in the literature say that they want to include their sexual function outcomes as a part of the discussion of their cancer care, but more than 60% of providers think that patients are more concerned with survival than with their sexual function as if one couldn’t be concerned about both. And I will tell you from my own clinical experience that when I first became a sex therapist in cancer care, the oncology clinicians would say to me, “The patients are not going to talk to you about their sexual lives. They are only concerned about the cancer.” Of course, it wasn’t true whatsoever.

Now, one of the things that prevents the conversation too is that some patients feel that they are not entitled to ask about what to do about the sexual concerns. Sometimes people have said to me, “My doctor has already tried to cure my cancer. How am I going to ask him or her for another thing?” So they don’t feel entitled to ask for that. And so this becomes a loss that is then grieved and it’s a disenfranchised grief in the sense that it’s not seen by these patients and maybe sometimes by some providers as legitimate, but of course it’s totally legitimate and I just want to emphasize it here. So the lack of communication leads to the fact that men and women with bladder cancer don’t find out about how to understand the sexual problems. They don’t find out about rehabilitation, and they are left hanging in survivorship. And while the rest of their life may be going quite well, this area is not addressed.

Dr. Daniela Wittmann:

Now, there was a study done at Johns Hopkins where they ask oncology providers around the country to tell them how much they talk to their bladder cancer patients about sexual health. And these were patients with radical cystectomy, so with the muscle-invasive bladder cancer. So these providers that were asked, and on this graph you see what the clinicians did not address. And in blue, you have men. In yellow, you have women. So you will see that they did not discuss sexual orientation, baseline sexual function, the partner, sexual problems, referral options, and potential for nerve-sparing.

And I want you to pay attention too to the disparity between the genders. You can see here that a significant number of female patients were not counseled about baseline sexual function, i.e. that was not assessed, risk of post-operative sexual dysfunction, so they were not prepared that they would have it, and then potential for nerve-sparing approach, which today is something that should really be discussed with every patient, whether there is a potential for nerve sparing because it can protect sexual function. So many topics of non-sexual health were not discussed with any patients, but especially with female patients. And this is an important disparity that we have to keep on educating our providers that they should not be discriminating.

Dr. Daniela Wittmann:

Now, what these clinicians said was that they thought the patients were older, and so maybe they didn’t care, they didn’t have time to discuss that may be somewhat legitimate. They were uncertain about the patient’s baseline sexual function. Well, if uncertain, you should measure it. And they were concerned that the patient would be uncomfortable. There’s also all this research that says that patients think that the physicians are not going to be comfortable. So there’s this mutual protection going on and then the discussion is not had. But for only 5% of these urologists so that this was outside the scope of their practice, in other words, 95% of these clinicians saw sexual health counseling as within the scope of practice. So they say that, but they’re not doing it. So that is a problem in the field, and I imagine that some of you, at least in the audience have encountered this.

Dr. Daniela Wittmann:

So there are consequences when we don’t talk about these things in cancer care.

I saw a woman in my practice. She was 50 years old. She had a new nail brother, and during that time, she lost her uterus and ovaries. So after she was treated and recovered, she came to me with her husband. She told me that her neobladder was functioning beautifully, her urinary functions better than before the surgery, but she said, “Nobody ever told me that I would go into menopause. It hit me hard. My interest in sex was always low and this made it much worse for my husband and for me.” So she had not been informed that at 50, if she hadn’t gone through menopause, she would be thrown into menopause. And when it happened, she was astounded, shocked and very upset.

This is a patient advocate who told Liz a story about her own experience. She had had an ileal conduit at 58 and then had to have several vision surgeries. And she said, “I searched for resources to help me with my sexual problems. I found a menopause institute in my area. They did a two-hour evaluation and sent me to physical therapy. It was only then that I learned that a vagina may have various sizes after a cystectomy and that no matter how much dilating I would do, my husband and I would never be able to have intercourse.” I mean, this was astounding information for her, which was never explained to her before or after her surgery. So you can see that there are significant consequences for people when that kind of conversation and counseling doesn’t take place.

Dr. Daniela Wittmann:

Now, we have a little bit of research about what kind of impact treatment for non-invasive bladder cancer can have on sexual function on sexuality. So interventions such as cystoscopic examination can lower desire because, one, is uncomfortable in the genital area after that because the urethra is irritated. The TURBT can interrupt sexual activity because of bleeding and discomfort. And again, there can be lower sexual function. The installation of BCG can interrupt sexual activity first of all because there’s a need to abstain from sex for a period of time, but a person may also feel fatigued and have flu-like symptoms. And some patients have worried that they might contaminate a partner either with a cancer or chemotherapy. So those are the kinds of things that any clinician who is treating a patient for non-invasive bladder cancer should be discussing with the patient.

And I have listed here some of the problems that men might have and women may have in this context, men erectile dysfunction and irritated urethra, going to the bathroom all the time and bowel problems. For women, it can be vaginal stenosis, urinary irritability and frequency, loss of function of the ovaries, vaginal dryness and dyspareunia and bowel problems as well.

Dr. Daniela Wittmann:

Now, when a person has had a cystectomy, let’s start with women. The extent of a surgery will affect the woman’s sexual response. So if as a part of the surgery a part of the whole vagina is removed and the cervix is removed, then it’s impossible to have intercourse. Sometimes women have a new vagina reconstructed which enables intercourse, but it’s important for that woman to know and for her partner to know that that vagina will not have the normal vaginal sensitivity. It’ll be like any other part of skin, it just will not have a sexual sensitivity. When women lose ovaries, like the woman in my example, they may have ultimately a postmenopausal sexual response, which is low desire and vaginal dryness, sometimes challenges with orgasm, but often not. The loss of the end part of the urethra closer to the outside of the body and the front wall of the vagina can interfere with the ability of a woman to have an orgasm. So knowing about these things ahead of time, that this is going to happen, it’s terribly important because it’s something to prepare for.

Obviously, cystectomy is a big operation, and so it may not be quickly that a person is interested in sex. We did some research at the University of Michigan and found that people, men and women recovered their interest in sex sometimes maybe not as soon as six months after surgery. And that’s fine, which means that you have to discuss this thing periodically during at least the first two years to find out what’s going on. The urinary diversion may or may not affect body image and sexual confidence. Now, there has been some research on this and it’s not conclusive. In some studies, it did not affect body image, and in some, it did. So perhaps this is just an individual experience.

Dr. Daniela Wittmann:

Now, let’s look at men. After a cystectomy, many men have a removal of the prostate right along with the bladder, and that results in erectile dysfunction. There is urinary incontinence at night with the neobladder, which can interfere with sexual activity at night. So people have to move their sexual activity to another time of day. If there’s been a prostatectomy as well, there is no ejaculation, although men still can have orgasms. And then, again, the same thing about the difficulty of the recovery. It can take a while to be interested. And it’s the same thing about a urinary diversion is applicable to men as it is to women.

Dr. Daniela Wittmann:

Now, there are ways that rehabilitation of sexual function and sexual lives can occur, and that is, first of all, surgically, that should always be a discussion about whether they could be a nerve-sparing with a cystectomy to see whether people can preserve as much of sexual function as possible. It should be discussed what parts of the body are likely to be removed and how that would affect sexual function.

And there should be measurement. There should be some questionnaires for baseline sexual function and go further into survivorship to find out how things are changing and where help is needed. So that’s the physical part. Psychologically, people can get upset, people can get depressed, anxious, worried, and that has to be addressed as well. And there’s a lot of psychological support that can be helpful. People do so well with education alone and with establishing realistic expectations, but also just support for figuring out what’s going to be the new normal, which some people like to say. The sexuality after bladder cancer treatment, that’s an important discussion to have in the context of people being unhappy about what’s happened to.

And then there needs to be a help for the partner and for the couple because the sexual problems that bladder cancer patients have after treatment affect the partner just as much as they affect the patient, even though not exactly in the same way, but the relationship has changed.

And then we live in a multicultural environment. So it’s important to understand how people’s culture or religion, certainly sexual orientation will affect what kind of rehabilitation would be valuable, what would be unacceptable. I’ve had plenty of patients who were Catholic or they may have been Muslim and they, for example, did not want to masturbate as a part of rehabilitation. I’ve had other patients who, because of sexual norms, there always has to be another family member in the room to discuss. And in some cases, it’s been better to have a male sex therapist where it’s humiliating culturally for a man to be talking to a woman about their sexual problems and vice versa. So there are many things from a religious, cultural and social point of view to discuss.

And when it comes to sexual orientation, there’s been a problem in healthcare of people thinking about sex as being heterosexual only. And that has discouraged some patients, male patients who have sex with men or female patients who are lesbians to discuss their sexual orientation because they fear discrimination. And there’s been plenty of stigma and discrimination at least in the past. That doesn’t even address what do we do about transgender patients who have to be dealt with in a very practical and sensitive way so that one can really learn what it is that they need sexually after bladder cancer treatment.

Dr. Daniela Wittmann:

So how do we do a sexual health assessment? We want to find out about the baseline sexual functioning and how that compares to the current sexual functioning. I mean, ideally one should do it before treatment and then after treatment to have a comparison, but we don’t always have the luxury. So at least when we find out after treatment what the patient remembers from previous and how they compare to the current, that’s very helpful to see what kind of things they’ve lost that have changed and what it is they’re going to have feelings about. There may be other symptoms, urinary bowel symptoms, missing body parts. People will have feelings about that and people will have concerns about that, especially if there’s any kind of urinary or bowel leakage.

And we want to know how they dealing with the brief response with their emotions, if they are depressed or anxious, how are they dealing with it and are they feeling successful? We want to know about the partner’s attitude, about the partner’s sexual functioning concerns because the partner, as I already said, is a key stakeholder in the experience. We want to know about any other illnesses, chronic illnesses and medications that could be interfering with sexual functions such as blood pressure medications or psychiatric psychotropic medications. We want to know about substance abuse because all of these things can affect things. And then, if there are any other stressors that could be affecting a person’s desire to be even sexually interested because they may be concerned about other things that are really affecting them emotionally and just give them no space for their sexual health.

Dr. Daniela Wittmann:

And then we go to work. From a psychological point of view in sex therapy, we do focus at the beginning on grief work. We focus on psychoeducation. So we want to make sure that every person who’s undergoing bladder cancer treatment understands the relationship between the symptoms, sexual problems and the treatment for bladder cancer, and any other illnesses and medications and so on. We want to know how they’re dealing with their feelings. Let’s say that a person’s dealing with it as well as anybody can, we work on progressive return to sexual interaction. And for some people who are comfortable with each other who can talk, this is not that difficult, even if emotionally challenging. And some people really feel very anxious about how it’s going to work, and so we use a methodology that’s called senseate focus exercises, which starts with non-genital and even non-sexual touch. It’s really a sensual touch where people explore, massage and essentially touch each other’s bodies and talk about what that feels like, what feels good, what doesn’t feel good, et cetera, and gradually, gradually move towards sexual interactions based on what is available sexually after bladder cancer treatment. It’s actually a great technique. It was developed in the 1940s, ’50s by Masters and Johnson’s when newlywed couples were terrified of having sex. It’s about reducing anxiety and increasing comfort with one’s own and each other’s body.

And then we talk about expanding sexual repertoire, which means not over-focusing on penetrative sex, especially if it’s not available or if it’s painful. Talk about non-penetrative sex such as oral sex, manual stimulation, vibrators, using sex toys, anything that’s going to allow people to have a sexual experience, the ability to reach orgasm. It doesn’t have to be intercourse. Some people don’t believe that, but it’s true. Sex is all kinds of things. And you know how they say that the biggest sexual organ is the brain. So if people are willing to be flexible, it’s definitely helpful. And we have research that tells us that. If people are flexible, they end up being able to go through this rehabilitation more successfully.

Dr. Daniela Wittmann:

Now, I’m going to go through some treatments for erectile dysfunction for men, which some of you may be familiar with, but for those of you who are not, there are the pills, the PDE-5 inhibitors such as Viagra, Cialis, Stendra, Levitra that are available by prescription and they may or may not work. If a prostate has been removed with a bladder, it may not work for a while and eventually, it may if there is some recovery of erectile function, depends on baseline erections, and that’s a very worthwhile thing to pursue.

There are vacuum erection devices that help by pumping blood into the penis that is unsecured with a constrictive ring and that can work for any kind of penetration. There are suppositories that are very tiny, the size of a rice kernel, even smaller, that go to the tip of the urethra. And about 15 minutes later, the medication opens up the blood vessels and traps blood there for an erection for about 45 minutes. Penile injections are more or less the same medications that go to the side of the penis. And men always look at me like I’m freezing when I see would be using injections. They’re very tiny. They like diabetic injections. The shaft of the penis is not as sensitive as the tip of the penis. And so rotating these injections can, again, bring an erection about 15 minutes.

And then people who have a persistent erectile dysfunction don’t like any of the other methodologies can then have penile implants with a surgery where there’s a reservoir that is placed in the belly with little channels. They go to a pump with saline, basically salty water that can be pumped into these little shafts that are implanted into the penis and they create an erection. The sensitivity is preserved, so orgasm is possible. And then, at the end of intercourse and after orgasm, the pump can, again, release the fluid back into the reservoir and the erection deflates. So that is something that sometimes men will consider if they’re frustrated with any of the other treatments.

Dr. Daniela Wittmann:

Now, for women, women whose vaginas are preserved, but let’s say they are compromised by losing the hormonal substrate, so vaginal dryness, moisturizers, lubricants are helpful. If there is a narrowing of the vagina, dilators and vibrators can help stretch the vaginal walls, but again, it’s very important to know how much of the vagina is preserved. It’s possible to use…

Oh, I forgot to mention about the medications for men. There are always things to consider to make sure that it’s safe and that’s why it’s by prescription because the physician will discuss it with you. Do you have heart disease? Do you take medications such as nitrates? Are there things that, if combined with these medications, would give you some other problems? So that is important to talk about.

And as I’m talking about the local estrogen, it’s the same thing. So, for example, somebody who has family history of hormone-related cancers, such as breast cancer or pelvic cancers for women, would probably not be using this vulvovaginal estrogen, but bladder cancer itself is not estrogen-related and it’s perfectly fine to use this local hormone replacement. It’s also by prescription.

Sometimes women have pelvic floor dysfunction of these surgeries. So physical therapy can be really helpful. And there is a medication called flibanserin. The commercial name is Addyi. That can be used to help with sexual desire. But there are other ways to provoke sexual desire, which are much more just both psychological and stimulation-related body-provoked desire. So everybody thinks we should all have spontaneous desire. Many people don’t have it, even if they haven’t had bladder cancer. And so the way to provoke it is to start stimulating, agree to have sex together, start stimulating, and the stimulation itself then provokes the desire. But if somebody wants to use medication to have more desire, flibanserin is there.

Dr. Daniela Wittmann:

What’s important to realize in bladder cancer is that the care is multidisciplinary. So it’s not just your oncologists who can prescribe all these things and get it done. Oncology specialists need to collaborate with other people. Nurse specialists can teach about how to use sexual aids. There are some that help with stoma care. Sex therapists help with our recovering sexual confidence and sexual relationship. The urologist can prescribe some of these medications for sexual function for men and gynecologists for women. If a person’s depressed, mental health providers are important. Pelvic floor therapists, physical therapists, that’s a specialty, are extremely helpful in this area. So there’s a team that needs to be gathered for this recovery. And sometimes you can find the nurse specialist or somebody will help you coordinate, but if you have it in your mind, you can hunt down those people and compose your own team.

Dr. Daniela Wittmann:

When you see your provider, if they do not bring up sexual concerns, it’s important for you to bring it up and let them know that it’s important to you because they will find reason sometimes not to talk about it, time, they don’t feel comfortable, they don’t know if it’s going to upset you, they don’t think you care. If you tell them, they are more likely to help you because most clinicians really want to help you. Ask about expectations for functional recovery. And even though probably most people attending this webinar have already been treated, et cetera, et cetera, it’s still a good conversation if you haven’t had it about what’s available for sexual rehabilitation because maybe you haven’t had that full discussion. The rehabilitation should be both for the sexual aids if they necessary, but also for the psychological support for your sexual recovery. And that’s usually sex therapists. And sometimes it can be just any mental health provider, but that’s going to help you develop the confidence to then find a sex therapist and get help.

So there are qualified certified therapists, sex therapists who are certified by the American Association of Sex Educators, Counselors and Therapists. Their website will show you every state in the nation where those sex therapists are, what they do, whether they take insurance, many have their own websites that they post on this website. So there are sex therapists in most states and these days, people do a lot of this work on telehealth over the internet, so they don’t even have to be in your local town or city. They can be 70 miles away in your state and you can still get the work done.

Dr. Daniela Wittmann:

Here are some of these resources. I already mentioned the American Association of Sexuality Educators, Counselors and Therapists. There’s also the Sexual Medicine Society of North America. That’s mostly urologists, but there are some mental health providers. And then the Society for Sex Therapy and Research, SSTAR, has mostly the mental health providers in sexual health. And actually, that could be put into the chat for people to get those links. That would be really helpful.

And that is the end of my presentation and I’ll very much welcome any questions.

Patricia Rios:

Dr. Wittmann, thank you so much for such a comprehensive presentation.

We’ll go into the Q&A session, but before we do that, I have two quick announcements. One is to remind our listeners that this webinar is being recorded and that it will be available on the BCAN website two to four weeks from today. Also, the button at the bottom of your screen with a symbol Q&A or a question mark, that’s the button you use to submit your questions. And I see we already have a few and I’m going to read those out loud for you. Dr. Wittmann.

This one says, “Hi. I had a radical cystectomy, ileal conduit at University of Michigan in August of 2022. Consequently, I only have maybe an inch of vagina left. My husband, though supportive, finds my having an urostomy bag less than appealing to him, thus we have zero intimacy. Is there a way to have intercourse, let alone regain intimacy after all this time?”

Dr. Daniela Wittmann:

Could you repeat what of the vagina is left after the surgery?

Patricia Rios:

This person says maybe an inch of vagina left.

Dr. Daniela Wittmann:

So if there is an inch of a vagina left, it’s unlikely that there’s an ability to have intercourse. However, there are other ways of having sex and this is the situation that access to a sex therapist, and a discussion with both the patient and her husband would be really important because this is the one about expectations and refiguring out how the sex is going to happen, but all means, it’s not too late. As long as there’s enough emotional connection with the couple and both people want to find a way forward, it’s absolutely something worth pursuing.

The University of Michigan has a center for sexual health. I think there is a fairly long waiting list there, but that person can look for sex therapists in the state of Michigan. There are lots of them here.

Patricia Rios:

Excellent, thank you for answering that. We’ll go into the next question which says why do they need to take women’s vagina with iliac conduit but not with a neobladder?”

Dr. Daniela Wittmann:

I’m not sure that that’s true. I think that even with a neobladder, a part or the whole vagina may be taken. The neobladder is made out of the intestine. And so depending on the extent of the cancer, that’s what determines how much of the vagina gets taken, not the kind of diversion that a person will end up with.

Patricia Rios:

Great, thank you. I also want to take a minute to mention, and we’ll put the link in the chat, during our patient summit last fall, we had a urologist, Dr. Trinity Bivalacqua, who also presented on the management and the medical management of sexual dysfunction. And he goes into a lot of detail about that. So we’ll put the link. So if you weren’t in attendance, you can watch that recording. So thank you Dr. Wittmann.

This other question comes from one of our patients that says, “Can a non-invasive muscle bladder cancer patient through diet and exercise improve testosterone and or nitric oxide levels to enhance sexual drive/performance?”

Dr. Daniela Wittmann:

Well, you are really bringing up a subject which is the topic of emerging research, and that is that diet and exercise can improve sexual function. There are some studies that have shown that it can improve erectile function, that it can improve testosterone levels. And it would definitely be recommended that anybody who wants to improve their sexual function should engage in healthy diet and exercise because think about it, if you are feeling good in your body because you are exercising, it gets you more in touch with your body. So even without the testosterone, you will feel more interested in using your body in a variety of ways. But there is beginning research that shows that a plant-based diet particularly and exercise improve sexual function.

Patricia Rios:

And in that question, he mentioned nitric oxide levels. Could-

Dr. Daniela Wittmann:

Yeah, nitric oxide is a mechanism that gets affected in a prostatectomy. There’s a disruption of that mechanism. I’m not a physician, so I don’t really want to address it directly, so I don’t know whether it addresses nitric oxide, but that’s a good question. Maybe to discuss with… This is a good question, for example, for a sexual medicine physician. If you have one, if a urologist who has in his or her practice a sexual medicine physician or is a generalist him or herself, they would be able to answer that question. And ask them to look up the research because they may not know it, but they can look it up.

Patricia Rios:

That’s an excellent suggestion. Thank you. So during the presentation, you talked about some of the concerns on non-muscle invasive and you mentioned the term vaginal stenosis. Can you explain what that is?

Dr. Daniela Wittmann:

Yes. Vaginal stenosis is something that can happen sometimes just based on removing ovaries, vaginal atrophy can happen. That can actually happen to women also after menopause. Then also if there’s been radiation to the pelvic area that can cause vaginal stenosis. What that means? That means a narrowing of the vaginal canal so that when then the penis tries to penetrate is very painful. There’s also lesser elasticity of the vaginal walls, which makes it harder. And so that’s why the vaginal moisturizers, the lubricants, sometimes stretching with vaginal dilators and sometimes hormonal supplementation, estrogen supplementation can be helpful.

Patricia Rios:

Now, this is a female and she explains, “Before surgery, I asked to preserve as much as my vagina as possible. Intercourse is painful. How do I know if there’s enough vagina left?”

Dr. Daniela Wittmann:

Excellent, wonderful question. Somebody needs to look in and tell you. So that could be a gynecologist. It could be physical therapist. Probably gynecologists would be the best person to start with to see. You could also just ask your urologist, “How much of my vagina did you take?” if they haven’t told you that.

Patricia Rios:

Great question. All right. You mentioned abstaining during BCG. For a male receiving BCG, does this apply only to vaginal intercourse? Would it be safe if a condom was used?

Dr. Daniela Wittmann:

Well, I think that the physicians generally recommend that regardless, because it’s something that’s trying to kill the cancer that therefore it’s got a certain amount of toxicity, you would probably abstain. So they would probably say don’t even… I mean, it’s not a long abstention. Anyway, I think that maybe two weeks or something like that. I don’t know specifically, but if they did tell you you can use a condom, then you shouldn’t.

Patricia Rios:

Okay. All right. Here we have a… Let’s see. “I just learned that the muscles in my…” Oh, goodness, it disappeared. Okay. “I just learned that the muscles in my penis have been the generating since my radical cystectomy and neobladder surgery two and a half months ago. Are you aware of men who have recovered from a similar situation to have a normal sex life?”

Dr. Daniela Wittmann:

There are men who have recovered erectile function after prostate removal. This is usually based on age, so the younger, the better, and also on erectile function before any kind of treatment for bladder cancer or for prostate cancer, before the removal of the prostate. So yes, there are men who recover the erectile function. It’s not a large number of men. It’s probably about 20%, but it exists. And anybody who obviously recovers erectile function is extremely pleased. There are many men who recover to the point that they can begin to use those PD-5 inhibitors, the pills rather than the more dramatic aids such as the pump or the injection. And one of the main things that people talk about is the loss of the spontaneity when you have to use medicine or the pump. And obviously the ability to have spontaneous erections is highly desirable. And if that’s happening to anyone in this audience, I’m so happy for you. But it can take up to two even years or longer. So if you’re six months out and it hasn’t happened and you had a really good sexual erectile function before surgery, don’t give up.

Patricia Rios:

You’re right. This listener says that both bladder and prostate were removed and lost that loving feeling, will it come back? And also looks like he had chemo and radiation early on. It says, “I can stimulate my wife, but I cannot be stimulated. Any suggestions for others that are experiencing similar?”

Dr. Daniela Wittmann:

I’m not 100% sure what is meant by that loving feeling. That could be desire. That could be pleasure. That could be orgasm. I’m not sure what is meant. So low desire is not unusual in that circumstance. And it can be based on the psychological experience of having lost so much that it doesn’t feel good and right. And sometimes men, when they don’t have erectile function that is reminiscent to what they had before the surgery feel very sad. And so that interferes with desire. Erectile dysfunction is pretty typical after this kind of treatment. So that would not be surprising. Really, any man who’s had surgery, even those men who have had radiation should be able to have the ability to have an orgasm, continue to stimulate and don’t give up. Now, I didn’t remember whether this person had hormonal therapy as well of any kind.

Patricia Rios:

It wasn’t mentioned.

Dr. Daniela Wittmann:

No. Okay. That certainly takes desire away, erectile function away, and sometimes orgasm as well. So the ability to have an orgasm should not be gone or should be able to return over time with continuous stimulation, but erectile function and low desire are pretty common.

Patricia Rios:

All right, we have a question about, and this was submitted before today’s webinar. The question says, “Our new normal, including intimacy, means overcoming our emotional fatigue. What are some ways to manage our emotional fatigue?”

Dr. Daniela Wittmann:

Well, the best way probably to do it is to set aside time. So very often, sex therapists talk with their patients about setting time aside as a romantic date and find a way to relax with music, with scents, being in a relaxing environment, maybe take a shower together, maybe take a bath together, something that will be soothing. Some people can’t get there right away and may need to do that.. May do that relaxing activity that’s setting aside of aside time on their own before they can get to the partner relationship. If you find that this is really not working for you, just find a sex therapist and have a more detailed discussion about your situation and what would help.

Patricia Rios:

That’s helpful, and that leads me into this other question. I think during the presentation, you talked about feeling comfortable talking about this topic. A patient mentioned that since they had cancer, the husband doesn’t want to have sex and the patient doesn’t know how to address this subject. So what tips do you have for that individual?

Dr. Daniela Wittmann:

Well, if they are not talking, then I would recommend they go see somebody. When we did our research, actually that was in prostate cancer some years ago, we found that a big majority of people really don’t talk about sex. They can have great sex for 40 years and never have to talk because they have figured out a way of touching each other, of making sounds that has worked for them and it’s been fine. And now they have sexual problems and they don’t know how to talk. People are uncomfortable saying words. People are very afraid of hurting each other’s feelings, and they have the worst fears about what the other person is thinking and feeling. And they just something where sex therapists can really help because they really start helping with that conversation to find out what are people feeling? What is it that makes them uncomfortable? What is it that they are fearful about? What preconceptions they have about what sex is? That is a big one. That is a big one for people who might think that intercourse is the only way to have sex. And it’s so not true.

I found in my practice that when people are willing to talk about it, be flexible, learn other things to do, one of the things I have to do is talk. And so the emotional connection becomes stronger. And when people have more of an emotional connection right along with searching for the sexual connection and sexual pleasure in a new way, it can make them closer. Number one, because they’ve overcome a problem together and they may have to both grieve to start with, but also building something in spite of all the assault on the body and on the relationship, building something together that is intimate and that is pleasurable can be very powerful. And people can feel like… And this is something we found in our research as well, that those people who grieved who were reasonably flexible and re-engaged in sex, albeit in a different way, ended up feeling like they built something very special and felt very, very connected.

Obviously it’s not going to work for everybody, but there’s a really good opportunity that that would happen. And sometimes it’s necessary to get help and it’s really good to get help. At the University of Michigan, we have a sex therapist embedded in prostate cancer care, and I think that it should be done in bladder cancer care too. We don’t have that. So it’s important to take initiative, find a sex therapist, go there together and start the conversation.

Patricia Rios:

And when finding that sex therapist, what are some of the tips that you can give us in terms of questions to ask to ensure it’s a good, fits the needs that one patient has?

Dr. Daniela Wittmann:

Well, I think that any sex therapist will ask, what brings you here? What are the issues that you’re facing? And we’ll ask questions about, what it used to be like? What is it like now? What are some of the barriers that you’re feeling? What solutions have you tried? So I think at the end of that, that therapist should give some ideas about how to proceed. And then the question is, can you help us? It’s really the therapist who will do the asking. The main thing that the patient and the partner need to do if they want help is to go find it and feel entitled to it because everybody’s entitled to have a sexual relationship that works for them. Everybody is entitled.

Now, it has happened in some relationships that maybe one partner wants to continue, the other one doesn’t. Then there’s a different kind of grief that’s involved. That’s very hard and it’s very painful, but it’s definitely not the outcome that is most often there. It’s just that people are not used to working on sexual problems. It’s a very sensitive topic. People just don’t want to hurt each other’s feelings. And when you start protecting each other, then you can’t get anything solved. And a sex therapist is the kind of person who will not have that barrier, right? It’s their job to discuss with both of you what ails you know, what it is that you’re having a hard time with. And being able to listen to each other, hear each other out, find a way of accommodating and finding a way of realizing that you’re in it together can be very helpful.

Patricia Rios:

Well, Dr. Wittmann, thank you so much for creating a safe space for us to have this conversation. I hope everyone who has joined us today leaves empowered. And I think the word that you used that stuck with me, that we’re entitled to this service. And so I want to remind all of you that in the chat, there’s links to the various resources Dr. Wittmann mentioned. So if you’d like to look for a sex therapist near you, please check out those websites.

And before we conclude, Dr. Wittmann, I like to ask our speakers to leave us with the keywords or message that you want us to take away from the presentation.

Dr. Daniela Wittmann:

We are all sexual beings. Our sexual self is an integral part of who we are. And if we are not well in every other area, we go and seek help because we think, of course, we should seek help. We should do that for our sexual lives as well. That goes along with the statement that we are entitled to have a good sexual life, and we are entitled to have sexual experiences in spite of our chronic conditions and disabilities. We are sexual beings, and that is core to our existence.

Patricia Rios:

Thank you so much. And with that, I want to thank Dr. Wittmann for joining us today and for sharing her expertise with us and to you, our listeners, for joining us. We look forward to seeing you at another BCAN Patient Insight webinar series. Have a wonderful day and we will see you next time.