3.1 Working with a couple

Doug and Jean, three months after surgery

Module 2 took the history from Doug and Jean before his surgery. This lesson meets them again three months afterwards, at the appointment where the assessment becomes a plan.

Doug had a radical prostatectomy three months ago, and he still has to wear a pad to manage incontinence, showers twice a day, and says the leaking makes him feel juvenile.

Jean describes what changed at home: they now sit at opposite ends of the couch and he gets up when she comes closer.

Doug has not been sexual since the procedure, and he gives two reasons for it. He is afraid that trying will end in failure, and he does not feel clean.

Jean has been giving him time, and neither of them has raised the subject at home.

3.1 Working with a couple

Working with a couple means two assessments

The appointment Doug and Jean are about to have contains two patients, not one. Guideline statements 22 to 27 set out psychosocial and couple interventions for both partners¹.

The biopsychosocial frame used in the guidelines treats the man and his partner as the unit of care. It covers the physical, the psychological, the relationship and the social together. Module 2 introduced that model on this same couple, before Doug's surgery.

All of this rests on one condition. The patient and the partner both have to agree to the partner being included before couple work starts.

Guideline statement 24 makes partner inclusion conditional on the patient and the partner agreeing, and it covers referral for psychosexual treatment in the same sentence.

Patients and partners also arrive with optimistic expectations of what treatment will restore. Education is what moderates them².

Take a goal and an expectation from each partner, then build the plan from what they have told you.

3.1 Working with a couple

How to ask each partner what they want from treatment

Ask each partner in front of the other and you get two answers. What you do next depends on whether the answers match, and both people hear them at the same time.

Jean can also tell you what Doug cannot: how his withdrawal looks from her point of view. She has her own account of what changed, and her own reason for holding back. Getting two answers rather than one depends on how you ask:

3.1 Working with a couple

How to build the plan from what the couple have already told you

You now have a goal from each of them. The rest of the plan comes from a worksheet Doug completed at home, on the treatments and the kinds of touch he would consider. The clinician reads his own answers back to him and proposes a starting point from inside them. The appointment then starts from their answers rather than from your suggestion:

Try:

SAY

• You've said you're open to oral sex, mutual stimulation and erotic massage, and that toys aren't for you.
• On the treatments, you'd try the tablets and you'd consider injections. You weren't sure about the vacuum device.
• The touch that doesn't involve penetration is where I'd start, because it's the part you've both already agreed to.
• Do you feel ready to take that step?

If the couple agree with a condition attached:

SAY

• What would need to change for you to feel ready?

As in the earlier modules, these phrasings are saved for you. You can find them in the conversation guide on the resources screen at the end of this module.

3.1 Working with a couple

Correcting expectations about the treatment

The plan includes an oral medication (tablets) Doug already has samples of at home. He expects it to work straight away, because that is what the advertising shows, and a weak first result may tell him the treatment has failed.

Correct the expectation before he tries, and keep the treatment as a valid option.

Read each pair across: the line to avoid, then the line to use.

The next film is that appointment: the clinician reads the couple's answers back to them and proposes where to start.

3.1 Working with a couple

When one partner assumes what the other thinks

Doug had a worry about how the leakage would look to Jean, and he had never asked her. Jean might not be troubled by it at all. Until you ask, the plan is built on his guess. He is the one who has to put it to her:

Try:

SAY

• Have you asked Jean what she makes of it?
• What do you think she'd say if you did?
• Jean, is that how you see it?

If the patient says the subject is too hard to raise:

SAY

• It's a hard one to start. You've just done it here, with me in the room.

3.1 Working with a couple

Knowledge check

Doug's worksheet says he is open to non-penetrative touch and rules out toys. He would try the tablets he has samples of, would consider injections, and is unsure about a vacuum device. He wears a pad and says he does not feel clean.

Where do you start?

Choose one option.

3.1 Working with a couple

3.1 Working with a couple

What you can do now

3.2 Rebuilding closeness after treatment

What worked and what did not, six months on

Doug tried the tablets his urologist had given him. They produced a headache and some congestion. He noticed a little more length and thickness in his penis, but no rigidity.

The rest of the plan worked. The couple are touching more, the affection came back, and Doug no longer needs a pad most of the time, though he still wears one for security.

Jean says the relationship is close to what it was before the surgery.

Even though the tablets didn't work, the overall plan did. Judge the plan by what the couple got as a result, rather than by whether the treatment worked.

The next film is that appointment. The clinician asks the couple whether the affection came back.

3.2 Rebuilding closeness after treatment

Desire does not always come first

Doug and Jean got the affection back before the wanting came back. That order is not an accident, and it is not what most people expect.

3.2 Rebuilding closeness after treatment

What closeness looks like for each patient

Ask a couple what closeness looks like and they name something they do. Ask whether they feel close and they answer yes or no.

Closeness looks different for each patient you see. Anthony is 62, single and recently divorced, and he was dating before his diagnosis. He comes back later in the module, in the lessons on penile rehabilitation and on prescribing a treatment. For him, closeness starts with deciding who to tell, and when. Ask him the same questions you would ask a couple, and one more about who he would tell:

Try:

ASK

• When the two of you felt close before all this, what were you doing?
• What does a good evening look like now?
• You've said you're closer than you were. What's different about it?
• What would closeness look like for you at the moment?
• Is there someone you'd want to tell? What would you say to them?

3.2 Rebuilding closeness after treatment

How to make it safe to say something they have not said to each other

Doug and Jean had each been holding something back from the other at home. Both of them said it out loud in the appointment. The opening was a question put to one of them about their own experience, with the partner in the room. Opening with one person's own experience is what makes that possible:

Try:

SAY

• I'm curious how that was for you, Jean.
• Was it rewarding for you as well?
• These things aren't easy to talk about. You've just done it here.

If one of them says something the other has not heard before:

SAY

• Doug, had you heard that?

3.2 Rebuilding closeness after treatment

What the clinician did when the closeness came back

Doug and Jean arrived describing what they had lost. In the film, the clinician says back what they have regained before she changes anything in the plan.

She named the closeness, and that it did not have to lead to sex.

• So you've been enjoying feeling close to each other, even when it isn't heading towards sex.

The couple hear that the touch counts on its own terms.

She said the connection between them had improved.

Doug is still worried about his erections. Hearing what has improved stops that worry being the whole picture.

She extended the plan and asked whether they were comfortable with it.

• From here you could carry on with that and add to it when you're both ready. Are you both comfortable with that?

The next step builds on what worked, and the couple agree to it rather than having it decided for them.

3.2 Rebuilding closeness after treatment

Knowledge check

Doug and Jean return six months after his prostatectomy. The touch has worked and the tablets have not, and he says he is still concerned about his erectile function.

What do you do with the plan?

Choose one option.

3.2 Rebuilding closeness after treatment

3.2 Rebuilding closeness after treatment

What you can do now

3.3 Introducing and staging sensate focus

What sensate focus is

Sensate focus is a staged series of touching exercises. The first step is one session of 40 minutes to an hour, in a warm and private room. One partner touches, the other receives, and they swap halfway through. The breasts and the genitals are left out at this step and added at the later ones.

Sensate focus removes the goal. Erection, penetration and orgasm are no longer the target. Touch becomes something the couple do for the sensation itself.

There are four steps in the process.

Offer sensate focus to a couple who have stopped touching each other because intercourse no longer works.

3.3 Introducing and staging sensate focus

Andrew and Jeff

The couple in this lesson have not had sex for a year. Andrew is 45, and he had nerve-sparing surgery a year ago for a small tumour. His prognosis for erectile recovery is good but not assured. He has not had an erection since.

Jeff has been his partner for about eight years, and the two of them no longer sleep in the same room.

Each of them has misread the other. Jeff thinks Andrew no longer finds him attractive. Andrew wants the contact. He holds back because a kiss might lead Jeff to expect sex. Neither of them had said any of this until they were in the room together.

3.3 Introducing and staging sensate focus

Why removing the goal works

3.3 Introducing and staging sensate focus

Connect before you prescribe

In the appointment you are about to watch, the clinician does not open with the exercise. She asks the couple what they used to do together when they felt close, and Andrew says cooking. She has them put a day in the diary for it before she raises anything else.

Start where the couple already were, and put a date on it:

Try:

SAY

• Early on, what were you doing when you felt closest to each other?
• Is that something you still do?
• When could you do that? Let's put a day on it.

If a couple name something they cannot do any more, go after what it gave them rather than the activity itself:

SAY

• What was it about that you'd want back?

3.3 Introducing and staging sensate focus

Offering sensate focus without pressure

Offer it as something the couple can decline. Ask what they think of it before you ask them to try it:

3.3 Introducing and staging sensate focus

How to describe the first exercise so a couple can do it

Describe the whole exercise in the appointment. The clinician does it in about two minutes, and the couple leave able to do it that week.

Cover the time, the room, the two roles and what is left out, in that order:

3.3 Introducing and staging sensate focus

The feedback rule: three things and one

After each turn the receiver tells the giver three touches they enjoyed and one they would change. Each has to be described closely enough that the giver could repeat it exactly.

Give the couple the rule in one sentence: Tell each other three touches you really liked, and one you'd change. Then show them the difference between feedback a partner can use and feedback they cannot.

Read each pair across: the line to avoid, then the line to use.

3.3 Introducing and staging sensate focus

How to teach arousal cues when the erection is gone

Andrew read arousal from his erections, and without one he could not tell what he was feeling. The other signals were still there, and he had never needed to notice them. Give him another way to read his own arousal:

Try:

SAY

• For a lot of men the erection is what tells them they're aroused. Without one, that signal is gone.
• What else do you notice when you're getting turned on?
• Some men notice their heart going faster, or a rush, or a tingling through the body.
• Fullness in the pelvis is arousal too, and it isn't tied to an erection.

If a patient says he felt nothing:

SAY

• Anxiety can mask it. Was there anything at all in the first few minutes?

3.3 Introducing and staging sensate focus

Answering 'why bother'

Andrew looked down, found no erection, and concluded that nothing else was worth pursuing. He had not heard that an orgasm without an erection is possible.

Clinician: When you looked down, the thought was, why bother. Is that fair?

Andrew: Pretty much. Without an erection, what's the point?

Clinician: The other version is, I don't have an erection and I can still enjoy this. You can still feel aroused, and you can still feel the pleasure of the touch. An orgasm without an erection is possible. Did you know that?

Andrew: No, I didn't know that.

Clinician: Then it's worth finding out what kind of touch gets you to orgasm without an erection.

The clinician says the thought back before she offers anything. She gives Andrew a sentence to replace it, then tells him what is still available to him. The fact about orgasm comes last, as a question, so Andrew can say whether he already knew it.

3.3 Introducing and staging sensate focus

What changes at steps two and three

Andrew and Jeff are still on the first step, and each step after it adds something.

Step two keeps the same shape and adds the breasts and genitals. The touch there stays brief and light, and it does not go as far as orgasm. The receiver can guide the giver's hand, which matters most for genital touch.

Step three gives more of the time to genital touch, and the receiver can either ask for it to carry on to orgasm or choose to stop. Pleasure rather than orgasm is still the goal.

Once a couple have done a step and it went well, they can move to the next one. Tell them what the next step adds and what it still leaves out. If a partial erection comes, the couple stop touching there, let it fade and come back to it later.

3.3 Introducing and staging sensate focus

What the fourth step is, and how to set up the first attempt

The fourth step is intercourse, and the couple run it as the next exercise rather than as a return to sex as it was. They attempt penetration and stop there. There is no thrusting, and no attempt at orgasm.

The measure of whether the step worked is whether penetration happened comfortably. That is the only measure, so the couple can stop worrying about orgasm.

The step is offered rather than prescribed, and the couple can decline it and stay where they are.

What is being tested differs by couple. After prostate cancer the question is usually whether an erection holds long enough. Where the partner has vaginal dryness or pain of their own, the step tests their comfort as well. For some couples the act is not vaginal at all. Set it up as an experiment, and say what happens if it does not work:

Try:

SAY

• You've done the last step twice now and it went well both times. That's what tells me you're ready to try this.
• Getting there comfortably is the whole goal. No thrusting, and don't worry about the orgasm.
• Take it slowly, use plenty of lubricant, and check in with each other on the way in.
• If it doesn't work you go back to the last step and try again another week. Nothing about that counts as a failure.

If a couple would rather not try yet:

SAY

• Then you don't. We can stay exactly where you are for as long as that's useful.

3.3 Introducing and staging sensate focus

Knowledge check

A couple have done the third step twice and both times it went well. They ask what comes next. He still gets no reliable erection.

3.3 Introducing and staging sensate focus

3.3 Introducing and staging sensate focus

What you can do now

3.4 Resuming sexual activity

Sex after prostate cancer treatment is wider than intercourse

While treatment affects more than just erectile function, in instances where couples are interested in sex but are limited by erectile function, there are other options for them to be sexually intimate with each other in the absence of erections.

The guidelines treat non-penetrative activity as part of rehabilitation. They name manual stimulation, oral sex and vibrators, and ask you to remind patients and partners that these can lead to connection, pleasure and orgasm¹.

For many couples, these activities become a lasting addition to their sexual repertoire, kept on even if erectile function returns. That is why the conversation is worth having early. It gives the couple something that works now, and runs alongside whatever treatment they are trialling or have success with.

Guideline statement 23 asks you to treat grief over sexual loss as a normal reaction, and to encourage couples for whom sexual recovery matters to pursue intimacy despite that loss².

Doug listed what he would consider three months after his prostatectomy: oral sex, mutual stimulation, using his hands and erotic massage. He ruled out toys and was unsure about a vacuum device.

Doug's six-month appointment ends with two things in the same plan: the touch he had agreed to, and injections.

3.4 Resuming sexual activity

How to name the options in words a patient will use

Non-penetrative activity is the guidelines' phrase, and it leaves the patient guessing which acts you mean.

Outercourse is the word that covers all the non-penetrative activities, such as oral sex, using hands and massage. It is important to teach this word, as it names the whole set of activities without naming penetration. Plain words also show him you are comfortable with the subject, which makes it easier for him to have the conversation:

Try:

SAY

• You could try oral sex, using your hands with each other, or massage. None of those need an erection.
• The word for that is outercourse. It covers everything that isn't penetration.
• Which of those would you two be most comfortable starting with?

If a patient treats these as second best:

SAY

• What would you want to be getting out of it? Let's start there.

3.4 Resuming sexual activity

What the clinician did about the leakage

Doug would not try the sexual touch he had agreed to while he thought the leaking made him unclean. In the film, the clinician deals with it in under a minute.

She gave one fact.

• Urine is sterile. There's no harm to either of you in contact with it.

Doug's worry was that he was unclean. The fact answers that worry directly.

She gave two practical suggestions.

• Some couples keep a washcloth handy, or lay a towel on the bed. If there's any leakage it's easy to clean up, and it doesn't interrupt what you're doing.

The couple leave with something to do as well as reassurance.

She checked with Jean.

• Is that alright with you?

Jean is the person Doug was worried about. She said it was fine, because she had looked after children, and her answer settled his worry about being unclean.

3.4 Resuming sexual activity

How to respond to a no, now and later

Doug ruled out toys and was unsure about a vacuum device. The clinician recorded both and moved on, and the plan proceeded from what he had said yes to.

A no can also depend on something that changes. Doug said no to oral sex because of the leakage. His no was about the leakage rather than about oral sex. When the leakage settled, the option was worth putting to him again. How you answer now decides whether the option can come back later:

Try:

SAY

• You've said toys aren't for you. That's fine, it's off the list. We can revisit this if things change.
• What is it about the vacuum device you're unsure of?
• You weren't having oral sex because of the leakage. That's settled down now.
• That could be back on the table, if you both want it.

If the patient declines a second time:

SAY

• That's fine. What would you rather put the time into?

3.4 Resuming sexual activity

How outercourse and the pro-erectile treatments run together

Doug left his six-month appointment with two things running. The couple carried on with the touch that had worked, and he was booked for a consultation to try an injection.

The clinician set them out as a pair. The injection is there for when he wants to try intercourse, and the touch is there whether the injection works or not. Both belong in the plan, and the couple need to hear why:

Try:

SAY

• The injections are there for when you want to try intercourse.
• The touch you've been doing stands on its own, and you can use it any time.
• You'll leave today with both.

3.4 Resuming sexual activity

Knowledge check

Doug returns six months after his prostatectomy. At three months he ruled out oral sex because of the urinary leakage. His continence has settled since and he no longer needs a pad most of the time. The oral medication he tried gave him side effects, and the sexual touch he and Jean agreed on has been working.

3.4 Resuming sexual activity

What you can do now

3.5 The partner's own sexual health

The partner has a sexual health of their own

A partner comes to the appointment for the patient. They have a body and a history of their own, and what has changed for them shapes what the couple can do together.

Two partners in this module arrive with different things to manage. Jean is in her sixties and has managed menopausal changes with her own physician. Jeff has gone without what he needs while Andrew avoids the subject.

Ask the partner about their own sexual function, in the appointment the patient came for.

3.5 The partner's own sexual health

What Jean brought to Doug's appointment

Jean came to a consultation before Doug's prostate surgery. The clinician asked her about menopause and about her own sexual function, and Jean had changes of her own to report.

She had managed them with her own physician, using vaginal creams and Premarin, along with lubricants she buys over the counter.

The dryness bears on the couple as well as on her. The clinician closes the exchange by saying that pain, friction and dryness make a sexual encounter less rewarding.

3.5 The partner's own sexual health

What the guidelines ask you to offer the partner

The question the clinician puts to Jean is the one the guidelines ask of every service. Guideline statement 22 asks for education, individualised sexual rehabilitation and psychosexual support for patients and partners across the whole survivorship continuum¹.

It asks for that support to be tailored to the treatment, the partnership, the cultural context, sexual orientation and gender identity. The partner is named in the statement rather than implied by it.

Statement 25 extends the same duty to gay and bisexual men, men who have sex with men, transgender women and gender non-conforming patients, along with their partners².

Supporting the partner's needs and encouraging mutuality are described as critical to a couple recovering their sexual intimacy. A partner who is struggling affects how the patient recovers.

Ask the partner about themselves rather than about the patient.

3.5 The partner's own sexual health

Asking the partner about their own sexual health

The partner did not book the appointment, so the question must come from you.

Choose one option.

3.5 The partner's own sexual health

Naming the treatments a partner already uses

Jean answered with vaginal creams, Premarin and something she buys over the counter. The clinician gave each of them its name and supplied the word for the one Jean had described. Each of these does a different job, and a patient needs the right word for each:

Try:

SAY

• So that's a hormonal strategy, with a vaginal moisturiser alongside it.
• A lubricant is a different thing again. That one's for the intercourse itself.
• Using one can make it more comfortable, and more pleasurable.

3.5 The partner's own sexual health

Asking Jeff about his own needs

In the film, the clinician asks how important it is to the two of them to get some physical intimacy back. Jeff answers for both of them at once.

Clinician: How important is it to the two of you to get some physical intimacy back?

Jeff: I can definitely understand what Andrew's going through, and I'm sympathetic to it.

Choose one option.

3.5 The partner's own sexual health

Knowledge check

You are seeing Doug before his prostatectomy, with Jean in the room. Both are in their sixties. You have mapped the couple's sexual pattern and taken a goal from each of them.

What do you ask her?

Choose one option.

3.5 The partner's own sexual health

What you can do now

3.6 Discrepancy in desire and conflicting goals

When one partner wants more than the other

Some couples genuinely want different amounts of sex. In others, both want the same thing and only one of them can act on it.

Andrew and Jeff look like the first kind of couple. They are not.

You met Andrew and Jeff in the section about sensate focus. Earlier in that same first appointment, the clinician asked each of them what they valued about physical intimacy.

Jeff said feeling desired. His love and attraction have never changed, and he does not feel them coming back towards him.

Andrew said he misses it too, and that none of the wanting has gone away. It sits behind a wall he cannot break through. The hardest part for him is that Jeff cannot tell he still wants him.

Both men still want sex, and neither of them can tell that about the other. From the outside, a couple in that position looks like a couple who want different amounts.

Ask each partner what they want before you treat this as one of them wanting less.

3.6 Discrepancy in desire and conflicting goals

A difference in desire, or a difference in what each can act on

Depending on the situation, a couple who report different levels of interest will need different approaches.

The second situation is easy to miss. As Basson's model showed, desire often arrives after arousal rather than before it¹. So a man who reports no spontaneous wanting has not necessarily stopped wanting sex. What he may have lost is the closeness that used to set the cycle going.

Find out whether the difference is in what they want or in what they can act on.

Guideline statement 26 sets the boundary for both². Refer for specialty psychosexual treatment when education and support are not enough.

3.6 Discrepancy in desire and conflicting goals

How to ask each partner what they value about intimacy

Ask each of them what they value about physical intimacy, and what they are missing. Their two answers are the material you work with:

Try:

ASK

• What is it that you value the most about your physical intimacy?
• How about for you? What's important about this to you?
• What are you missing?

If one of them answers for the couple:

ASK

• That's the two of you. What about for you?

3.6 Discrepancy in desire and conflicting goals

Telling a difference in desire from a difference in what each can act on

Jeff and Andrew both said the wanting was still there. What separated them was that one could act on it and one could not. Jeff had also taken it personally, and the clinician told him that couples who stop having sex commonly do.

Clinician: Jeff, is the wanting still there for you?

Jeff: It's never gone. I just don't feel it coming back.

Clinician: And for you, Andrew?

Andrew: It's all still there. I can't get past it.

Clinician: What gets in the way of doing something about it?

Andrew: I don't think I can follow through.

Clinician: You've both told me the desire hasn't gone. What's between you is what you can do with it. When a couple stop having sex, it's really common for the other one to feel it's about them. You're not the first couple to sit here with that.

Asking each of them in turn shows the desire is there on both sides. Saying back what you heard from both, then naming the rejection reading as common, gives Jeff another way to understand the silence.

Now try three of your own. For each one, which are you looking at?

1. A man two years after surgery says he thinks about sex as often as he ever did. He stops before anything starts, because he does not trust the erection to hold.

2. A couple tell you they have always wanted sex at different rates, and that it was a point of tension long before the diagnosis.

3. A man four months into ADT says the thought of sex does not arrive any more. His partner says he used to suggest it most weeks.

3.6 Discrepancy in desire and conflicting goals

How much is yours to work on, and when to refer

Naming what is happening between the two of them is itself the intervention. Once they can see it, they do the rest themselves. A couple will sometimes raise something that needs more time than your appointments allow. Work like that belongs with someone who sees couples over several sessions. Notice when you have reached that point and say so, because how you say it decides whether they take the referral:

Try:

SAY

• What I'm hearing is that you both want it, and one of you can't get to it.
• The part I can work on with you is what happens between you when you try.
• There are people who do this work with couples across a few sessions.
• Would you want me to look into that for you?

3.6 Discrepancy in desire and conflicting goals

Knowledge check

Andrew and Jeff tell you they are no longer sexually active. Jeff says he still wants sex and feels rejected by Andrew. Andrew says the wanting has not gone anywhere, and that he holds back because he does not believe he can follow through.

What have you got in front of you?

Choose one option.

3.6 Discrepancy in desire and conflicting goals

What you can do now

3.7 Penile rehabilitation

Penile rehabilitation

Anthony is about to start radiation, and at that appointment his clinician offers him penile rehabilitation. Guideline Statement 29 states that the clinician should define the intent and goals of penile rehabilitation on an individualised basis with three aims:

• Preservation of penile length
• Maintenance of corporal tissue quality
• Early patient engagement in sexual recovery

Importantly, Guideline Statement 29 says explicitly that penile rehabilitation should not be equated with treatment for the recovery of unassisted erectile function¹.

Erections depend on two things working together: nerves intact enough to carry the signal, and circulation good enough to fill the tissue. Surgery bruises the nerves, and they are slow to recover – often taking a year or more.

While the nerves recover, the man gets few or no spontaneous erections, so blood is not moving through the penis as it normally would. Erectile tissue needs the oxygen that blood brings, and without it the tissue stiffens and loses elasticity.

Rehabilitation fills that gap. Bringing blood through the penis regularly keeps the tissue healthy while the nerves catch up – which is why the clinician you are about to watch calls it an exercise program.

Most rehabilitation is done with a PDE5 inhibitor, and that is the only approach tested.

Devices and injections come in the next lesson, as treatments for erectile dysfunction rather than as rehabilitation, which is the distinction statement 29 draws.

Penile rehabilitation can be prescribed as maintenance for the tissue while the nerves recover.

3.7 Penile rehabilitation

What penile rehabilitation can and cannot promise:

Four guideline statements cover the evidence for rehabilitation². One reports a trial result. The other three say the evidence is not there yet.

One tested finding:
Statement 30. A PDE5 inhibitor in the first 45 days after prostatectomy does not improve unassisted erectile function at 12 months compared with a placebo.

Three where the evidence is not there yet:
Statement 31. There is limited evidence for any of the approaches that do not use a PDE5 inhibitor.

Statement 32. There is not enough evidence to say that rehabilitation prevents loss of penile volume.

Statement 33. There is not enough evidence to say whether it helps after radiation therapy.

As the evidence currently stands, nothing strongly supports penile rehabilitation or rules it out.

Anthony, the patient in this lesson, had radiation, so statement 33 applies to him. His clinician prescribes rehabilitation but makes him aware of the limited evidence. He tells Anthony at the first appointment that it may not restore firm erections, and three weeks later he asks whether Anthony wants to continue.

Offer the treatment and tell the patient what the evidence shows. The patient can then decide whether to keep going.

3.7 Penile rehabilitation

What rehabilitation is for, in words a patient understands

Rehabilitation asks a patient to keep to a routine for months, probably without noticing any change. Anthony's clinician prescribes a tablet with self-stimulation one to three times a week. A patient who hears the word rehabilitation will assume the routine is meant to bring his erections back, and he will judge it by whether they do. That is the assumption to correct, or he may stop when nothing changes. Tell him what it is aiming to achieve:

Try:

SAY

• This is about keeping the tissue healthy while you recover. It works like an exercise program.
• Early on this is about keeping blood moving through the tissue. You may get more firmness later, or you may not.
• Take the full dose of the tablet, then self-stimulation, one to three times a week. The tablet opens the blood vessels and the stimulation brings the blood in.

3.7 Penile rehabilitation

Answering a question about dependency

Anthony asks whether taking the tablets will make his own erections depend on them.

What do you say first? Choose one.

Choose one option.

Once you have answered the question, say which way the evidence points.

You have something to offer a patient who would rather not take a tablet at all. A vacuum device draws blood into the penis without medication, so it serves the same purpose, and for rehabilitation it is used without the constriction ring. Lesson 3.8 teaches how to use one. Offer it here.

SAY

• It's likely the reverse. More blood flow early tends to protect natural function later.

SAY

• If you'd rather not take anything, a vacuum device does the same job. We can go through it.

If a patient objects to how the tablets make him feel:

SAY

• You might get some flushing, a blocked nose, or some blurring of your vision. Those usually settle down. Tell me if they do not.

3.7 Penile rehabilitation

A patient can do it and resent it at the same time

Listen to the words a patient uses about the treatment. They will tell you what he thinks of it, even when he is doing everything you asked.

Anthony's clinician answers the resentment rather than the adherence. He says the evidence is not solid, offers to delay or stop the treatment, and lets Anthony decide. He chooses to continue the treatment.

Treat the complaint as information about the plan, and answer it.

3.7 Penile rehabilitation

What you can honestly say about timelines

Behind the resentment is usually a question about how long this goes on for. You can only give a patient a wide range.

Most men are starting to recover some erectile function by a year to 18 months after surgery. For a smaller number, recovery continues for longer. Nerve recovery is slow and takes longer than people expect.

After radiation the pattern differs. Function can decline further over the months following treatment, because radiation continues to have an effect after the course has finished. Anthony's clinician tells him this at three weeks, so that he knows to expect it at six months.

Patients often ask for a number: what are my chances of getting back to how I was. Saying that you cannot give one is a legitimate answer.

3.7 Penile rehabilitation

Why a tablet does nothing without arousal

Patients misread the tablet itself as well. A PDE5 inhibitor increases the blood flow that arousal produces. If there is no arousal, the tablet has nothing to work on. A man who swallows a tablet and then waits for something to happen has not given it the conditions it needs.

If the erection starts weak and firms up as sexual activity continues, the drug is working.

So, when a patient tells you the tablet did not work, find out what he was doing when he took it.

3.7 Penile rehabilitation

Two ways to score an erection

To tell whether a treatment is doing anything, you and the patient need a measure you both understand. Guideline statement 20 asks you to use a validated patient reported outcome measure whenever you can.

For erectile function the guidelines name four:

• the International Index of Erectile Function (IIEF)
• the Sexual Health Inventory for Men (SHIM), the short form of the IIEF
• the Expanded Prostate Cancer Index Composite (EPIC)
• the Patient-Reported Outcomes Measurement Information System (PROMIS)³

The Erection Hardness Score (EHS) is a fifth, validated on its own⁴. The four named here are questionnaires built for assessment and for tracking change over time. The EHS is a single question, so you can ask it in the appointment itself when a patient reports back on a treatment.

A patient picks one of five grades, and it takes a few seconds. Here are the grades:

Grade three is where penetration becomes possible. When a patient reports on a treatment, ask whether he reaches it.

Try one. A patient two months into rehabilitation tells you this:

It comes up and it's bigger than it was, but there's no way it's enough for sex.

Which grade is he describing?

The clinicians on film use a plain one to ten scale instead, because they are asking the same question in the patient's words. Either works, and the course shows both.

The EHS spells out each grade. On a one to ten scale you say what one and ten mean yourself.

One caution. The guidelines note that many of these measures were not developed on gay men and assume the patient is the insertive partner, so a score carries less information for some couples⁵.

Whichever scale you use, use the same one next time, or the two numbers cannot be compared.

3.7 Penile rehabilitation

Testing whether the medication is doing anything

Anthony says the tablets may not be working. The clinician does not change the dose. He takes Anthony off the tablets for a fixed period and gives him a ten-point scale in his own words, so that what Anthony reports back can be compared. Find out what not working means to a patient, and measure it, before you change the dose or the drug:

Try:

SAY

• Come off it for two weeks. There's nothing to taper, you just stop and start again.
• One is completely soft, the way you are walking down the street. Ten is what you had before treatment. Six or seven is firm enough for penetration.
• Keep a pad by the bed and write the number down. Two weeks off, then two weeks back on.

If a patient reports a number without a comparison:

SAY

• Was that with or without? That's the bit I need.

3.7 Penile rehabilitation

Knowledge check

A man is four months out from a prostatectomy. He was prescribed a PDE5 inhibitor for penile rehabilitation and has been taking it. He tells you it does not work, and that he has tried it three or four times by taking a tablet and waiting to see what happened.

What do you do first?

Choose one option.

3.7 Penile rehabilitation

What you can do now

3.8 Prescribing a treatment, and what to say when it does not work

What the guidelines ask you to put in front of a patient

You have met Andrew before, with his partner Jeff, in the sensate focus lesson, and again when each of them was asked what he was missing. Both men still wanted sex, and Andrew was the one who could not act on it. He is now a year on from nerve-sparing surgery, which is around the point where men start to see what function is coming back. At this appointment his clinician puts the treatment options in front of him.

Three guideline statements tell you what to cover in an appointment like it¹:

• Statement 34: Support pro-erectile aids and non-penetrative sexual activity for any patient who wants to keep having sex. Of all the guideline statements on erectile treatment, this is the one rated as a strong recommendation.
• Statement 35: Discuss every treatment option – oral medication, intraurethral suppositories, injections, vacuum erection devices, penile traction therapy and penile implants. Give the benefits, the risks and the contraindications for each. Tailor what you offer to what the patient prefers, what works for him, and how far into recovery he is. Ask what he wants from treatment and ask his partner the same.
• Statement 36: For erectile dysfunction that persists, tell the patient what a penile implant offers and what it risks.

This lesson teaches three of the options in statement 35: oral medication, injections and the vacuum device. The other three are listed below. This course does not teach them:

Open each one to see what it is and what it does.

Offer the aids and the non-penetrative activity in the same conversation.

3.8 Prescribing a treatment, and what to say when it does not work

Limitations of each option

Each of these options can work but they also have limitations:

Open each one to see where it falls short.

Vacuum device+

draws blood into the penis and holds it there with a constriction ring. Tissue that extends back into the pelvis stays soft, so the erection pivots at the base and is less stable for penetration. The blood held in is venous, so the penis feels cool and can look bluish. The ring belongs to sex rather than to rehabilitation. For rehabilitation the device is used without it, because holding venous blood in works against the oxygen the tissue needs.

Injections+

The most reliable of the three, and they work when nerve signalling does not. The dose has to be titrated, usually starting in clinic. An early dose may produce a partial erection or none at all, which is a dosing question rather than a failure. Penile pain is common and prolonged erection is a small but real risk that the man would need to be ready to deal with.

Oral medication+

a tablet amplifies an erection rather than creating one. It increases the blood flow that arousal produces, so there has to be some response for it to build on. Men with some erectile function left usually notice a difference with a tablet. Men who do not have erectile function may not notice an improvement.

A man's erectile function changes as he recovers. A tablet that didn't work at six months may work at a year, so it is worth trying again.

Name the limitation of an option at the appointment where you offer it.

3.8 Prescribing a treatment, and what to say when it does not work

How to offer an option with its drawback

A patient who hears the drawback from you, rather than finding it out at home, is more likely to trust the next option you offer him. Say it while you are still explaining the option:

Try:

SAY

• You put the cylinder over the penis and pump the air out, which draws blood in. Then you slide the ring down onto the base and take the cylinder off.
• It'll feel cold and it can look a bit blue. The ring only holds the blood in front of it, so the base stays soft and the penis moves more than you'd expect.
• A lot of men accept that because it means no tablets and no injections. You'd know within a couple of tries whether it suits you.

If a patient asks which one you would choose:

SAY

• It depends on what you want it for. Tell me what you're hoping to get back and we can discuss a suitable option.

3.8 Prescribing a treatment, and what to say when it does not work

Why men stop using a treatment that works

Injections have a high drop-out rate, even among men for whom they work. The reason is usually timing. The injection has to be given once arousal is underway but before penetration – so it means stopping just when a couple least wants to stop.

The couple are already kissing. He stops, goes to the fridge, finds the prescription, finds the needle, injects, and comes back. By then the moment has passed.

Before treatment one thing led to the next without either of them thinking about it. Now there is a step in the middle, and the couple must plan for it. Working out how to do it for the first time in bed, with the moment slipping away, is the hardest way to learn it.

Ask the patient to talk through what will happen, step by step, before he tries it at home.

3.8 Prescribing a treatment, and what to say when it does not work

Making the treatment part of sex

Doug, who you met in lesson 3.2, is a year on from surgery and using injections. They work. He calls them a nuisance and an inconvenience, and says they might be worth it even so. His clinician takes that further. The treatment does not have to be the interruption, and it can be what starts the encounter instead.

Make the tablet or the device part of what the couple are doing rather than a break in it:

Try:

SAY

• Get it out of the fridge and put it by the bed before you start. Then it's just there.
• You both don't have to stop. Whatever you were doing, keep doing it while he takes the medicine.
• Leaving a tablet on the bedside table in the morning tells your partner what you're hoping for tonight.

If a couple say it will never feel natural:

SAY

• You're right, it's different from how it was. It can still be something you look forward to.

3.8 Prescribing a treatment, and what to say when it does not work

How to tell a partner that wanting them and getting an erection are different

Some couples will only have sex if there is an erection, so when a treatment fails, sex stops. A couple who also enjoy things that do not need an erection carry on, as Doug and Jean did. Statement 34 asks you to support both at once, the aid and the activity².

A partner who watches an erection fail will usually conclude that he has lost interest in them. He has to say out loud that he still wants them, because the failed erection looks like proof that he does not. The patient is the only one who can correct that:

Try:

SAY

• Your partner has no way of knowing that wanting them and getting an erection aren't the same thing now.
• Tell them plainly. It doesn't have to be a long conversation, it has to be an explicit one.
• Would you want to bring them in? Some of this is easier to say once, with me here.

If a patient says his body is saying something else:

SAY

• It's saying something about blood flow. Your partner is reading it as something about them.

3.8 Prescribing a treatment, and what to say when it does not work

Why raising it early is better than waiting

Anthony did not tell Samantha about his cancer. Six months later the erection failed, in the appointment you watched earlier in this lesson. She still knew nothing about the cancer or the treatment, and neither of them spoke about it for two weeks.

He had good reasons for saying nothing. The relationship was going well, and he did not want to start it by talking about cancer.

In the appointment you have just watched, his clinician gives him two reasons to tell her. His erectile function is likely to get worse, and the worse it gets the harder it is to keep from her. A conversation he chooses goes better than one that starts because something has gone wrong.

He also tells Anthony how to start. Talk about the cancer first, which is easier, and let that open the conversation about sex.

What the clinician is really giving him is a choice about timing. He tells her now, in a conversation he has planned, or he tells her later, after an erection has failed and she is waiting for an explanation.

Tell the patient to raise it while he still chooses the moment.

3.8 Prescribing a treatment, and what to say when it does not work

Knowledge check

A man eighteen months after prostatectomy has been using injections for four months. They work most of the time. He tells you that last month one did not work, and that he and his partner have not been sexually intimate since.

3.8 Prescribing a treatment, and what to say when it does not work

3.8 Prescribing a treatment, and what to say when it does not work

What you can do now

3.9 Androgen deprivation therapy

What ADT does to desire

Every lesson so far has assumed the patient still wants sex and something else is stopping him. You have already learned to tell the difference between a couple who want different amounts of sex and a couple who both want it while one of them cannot act on it.

Androgen deprivation therapy is the treatment that takes the desire itself. Of all prostate cancer treatments, ADT is the one consistently associated with the largest loss of sexual desire.

So this lesson is not about a man who wants sex and cannot reach it. It is about a man for whom the wanting itself has gone quiet, and about what is still worth offering him.

Everything this module has taught still applies but be cautious what you promise the patient.

3.9 Androgen deprivation therapy

What ADT is, and why it is given

Androgen deprivation therapy lowers testosterone, because prostate cancer uses testosterone to grow. It is usually given by injection, sometimes with tablets alongside it. A man may be on it for months or for years, with radiotherapy, for cancer that has spread, or when the cancer returns after other treatment.

Every sexual effect in this lesson follows from the low testosterone rather than from surgery or radiation damage. That is why the effects last as long as the treatment does, and for a while after it stops.

There is a fuller account of the treatment in the module resources, in a recorded webinar from Prostate Cancer Foundation Canada. It runs 37 minutes and it is optional.

Know what the treatment is doing before you tell a patient what it will do to him.

3.9 Androgen deprivation therapy

What the guidelines ask you to cover before ADT starts

Two guideline statements tell you what to cover before the first injection, and both are rated strong recommendations¹.

• Statement 13. Counsel the patient and the partner about the effects of ADT on six things: sexual desire, erectile function, penile girth and length, ejaculatory function, orgasmic function, and the intimacy between them. Cover all six, whether ADT is the main treatment or added to another one. The statement names the partner alongside the patient, so this is a conversation for both of them.
• Statement 14. A man having ADT alongside radiotherapy gets the sexual side effects of both, and they add up. Say so, because he may attribute everything to the radiation.

Both statements turn on timing. Once the first injection is given, there is no version of this conversation that is not about something already happening to him.

Cover all six with the patient and his partner before the first injection.

3.9 Androgen deprivation therapy

How often ADT affects sex, and for how long

3.9 Androgen deprivation therapy

Body changes on ADT

ADT changes the body in ways a man notices every day, and the guidelines say forewarning him is extremely important:

Turn each card to see what ADT does, and what it means for the patient.

Where orchiectomy is used in place of ADT, the change is visible and permanent.

A man who has gained weight, lost body hair and grown breast tissue is describing his body, and how he feels about it decides what he is willing to do sexually. That makes these your subject rather than someone else's.

Treat these as sexual changes and raise them in the sexual health appointment.

3.9 Androgen deprivation therapy

Forewarning a patient about ADT without frightening him

Have this conversation before the first ADT injection, with the partner in the room. Most of what you are about to tell the patient will be new to him.

Loss of desire is likely rather than certain, and he is entitled to know that.

Some changes reverse and one does not. Grouping them misleads him about both.

He decides the order, so what matters most to him comes first.

If a patient says he would rather not know:

SAY

• That's fair. I'll write it down and you can read it when you want to.

3.9 Androgen deprivation therapy

The benefits of exercise in managing ADT

Exercise works on the weight gain and the muscle loss you have just read about, and on the fatigue and the disturbed sleep that come with ADT.

Statement 43 asks you to tell the patient and the partner about the importance and the benefits of exercise for sexual health, as part of managing ADT⁴.

Statement 21 covers the rest: stopping smoking, increasing physical activity, losing weight, eating more plant-based food and less red and processed meat.

3.9 Androgen deprivation therapy

What ADT does to the partner

Statement 13 names the couple's intimacy as one of the six domains you should cover, and it is the one that involves the partner directly⁵.

A partner who watches a man stop initiating reaches the conclusion that he has lost interest in them. On ADT they are partly right as the treatment did take away the drive.

However, they may be incorrect on the rest. The relationship has not gone, and in many couples the closeness survives even though the desire is gone.

The partner has a reaction to the body changes too and is rarely asked about it.

Neither of them is likely to raise any of this without being asked.

Tell them both what ADT has taken from the patient's desire and what it has left of their relationship.

3.9 Androgen deprivation therapy

How to ask about desire when the treatment has suppressed it

Most men on ADT report that their sex drive is reduced or gone. A minority keep it.

Sexual activity is not driven by desire alone. As Basson's model showed, desire can follow arousal rather than come before it⁶. So, ask the patient what desire he still has, and what he and his partner still want from their sex life.

What looks like lost desire is often exhaustion. Fatigue, hot flushes, disturbed sleep and loss of initiative are all common on ADT, and all of them make starting anything harder. A man too tired to begin is not the same as a man who does not want to.

Which would you ask first? Choose one.

Choose one option.

Then separate the tiredness from the wanting, and ask what the two of them still do.

ASK

• When you don't start something, is it that you don't feel like it, or that you're too tired to?
• What are the two of you still doing together that you'd both call intimate?

If a couple say sex is finished for them:

ASK

• That's a decision you're allowed to make. Can I check you're both making it?

3.9 Androgen deprivation therapy

What ADT leaves intact

The treatment does not take everything. ADT flattens desire, and that is usually its dominant effect. It also changes orgasm including altered sensation, difficulty reaching orgasm or anorgasmia. Statement 37 asks you to identify these and say they can be managed within a biopsychosocial approach⁷.

What ADT does not touch is affection. Touch, being held, showering together, a night away – none of those depend on testosterone and all four were on Doug's plan for different reasons.

So you are offering a couple on ADT the same things you offer everywhere else in this module. What changes is its status. Elsewhere it sits alongside a medical treatment. Here it is the treatment.

Say that to the couple explicitly. If you don't, they will hear it as what's left over once the real options have run out.

Make it the plan, and tell the couple that is what you are doing.

3.9 Androgen deprivation therapy

Knowledge check

A man three months into ADT alongside radiotherapy tells you he has no interest in sex at all and that his partner has stopped suggesting anything. He also mentions he is exhausted, sleeping badly, and has put on weight that will not come off.

3.9 Androgen deprivation therapy

3.9 Androgen deprivation therapy

What you can do now

What now?

You have reached the end of Module 3, the longest module in this course. Nine lessons and just over four hours, and it is the most demanding stretch so well done!

You can run an appointment with two people in the room and take a goal from each of them, name the closeness a couple still has, and build a plan from it. You can teach sensate focus from the first exercise through to the fourth step, open up what a couple can do that does not depend on an erection, ask a partner about their own sexual health in an appointment the patient came for, and tell a difference in desire from a difference in what each of them can act on.

You can explain penile rehabilitation honestly, including where the evidence is thin, teach a device, find out whether a medication is doing anything, handle the appointment after a treatment has failed, and forewarn a man about androgen deprivation therapy while still leaving him something to do.

Doug and Jean, Andrew and Jeff, and Anthony are the people you have followed through this module.

In Module 4: Inclusive care and your professional practice, the work turns to the people and the situations the rest of the course has not covered. Gay and bisexual men, and men who have sex with men. Transgender women and gender non-conforming people. The boundary problems sexual health care generates. Why sexual health gets left out of care, and what to do when you are the only person asking.

Your reflections

Review everything you wrote during this module, and email or print a copy to keep for your own records.

Resources from this module

Tick the resources you would like to keep, then email them to yourself. Anything you saved as you went along is already ticked for you.

Your reflections

Everything you wrote during this module is still here, on this device. Open it to read it back, print it or email it to yourself.