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For Partners of Men with Prostate Cancer – What to Expect – Part 2

Reminder of the statements to bear in mind as you read this article:-

  • I am not a healthcare professional and my comments do not constitute medical advice.
  • I am a woman, so my perspective as a partner may be different from that of a male partner.
  • My experience particularly relates to a man who had robotic surgical removal of the prostate gland, so it is likely to differ from the partners of men who have other types of treatment.
  • All men will experience prostate cancer and treatment differently – there is no “one-size-fits-all” experience.

So, you’ve read Part One of this article and you’re up to the really big bit – dealing with the healing.  This article is about your long-term mutual recovery from prostate cancer treatment.

I’m going to keep the discussion of sexual recovery fairly superficial, because that aspect of healing is far more complex than one article can cover.  The emotional, psychological and spiritual side of sex after prostate cancer deserves much more careful and respectful treatment.  Watch this space!

Dealing with Side-Effects – Incontinence

This is where you need to remember that you are both in this together.  The most common side-effects from prostate cancer surgery are incontinence (being unable to control your bladder) and erectile dysfunction (being unable to get an erection, or maintain one).

Some men will face the double whammy of both urinary and bowel incontinence.  We were incredibly fortunate that Alan did not lose bowel control.  For anyone facing that side-effect, I strongly suggest that you check out the Continence Foundation of Australia.  Their website and magazine are fantastic, as well as their free helpline 1800 33 00 66.

Generally, most men will focus on bladder control before they address their lack of sexual function.  As Alan discovered after his catheter came out, he did not even realise that he was leaking.

We went out for coffee after he’d had the tubing removed.  We were enjoying our coffee and chatting with the staff at our favourite café, when Alan suddenly realised that his pad was completely saturated.  Even worse, his light-coloured trousers had a wet urine stain for all to see.

We had another funny / not funny thing that happened around the time Alan got his catheter out.  He had placed an order for some incontinence pads.  When the boxes were delivered and we opened them up, the product was definitely not what we were expecting.  Imagine a toddler or a baby wearing a disposable nappy – great big, bulky padding between the legs and adhesive tapes at the side to adjust the waist.  Funny, but not funny!

Fortunately, we were able to exchange these for something a little less chunky and unappealing.

Does my bum look big in these?

I’m fairly sure that no adult wants to wear an incontinence pad.  For many men, this is an emotional and psychological shock to the system.

Apart from the sensation of wearing a pad wedged in his undies, Alan was also worried about any potential odour.  He has a very sensitive nose and is hyper-alert to unpleasant smells.  To this day, he uses baby powder in his jocks to minimise any potential urine odour.

Leakage is still a problem for us, even now that it’s been about nine years since Alan’s surgery.  There have been some nights (fortunately, not many) that he has leaked in bed.  I know that he is absolutely mortified by this.  I also know that he really can’t help it.  There are special sheets, mattress protectors and “underpads” available for much more serious nighttime wetting.

In a recent post on this website, Alan has written extensively about incontinence.  If your partner is experiencing more significant bladder (or bowel) control issues, you may find Alan’s article helpful.

Advice for Partners During This Phase

There may be partners reading this article who have experienced their own difficulties with incontinence.  I haven’t had children, so my pelvic floor hasn’t had to deal with childbirth – phew!  If you are a woman who has had post-birth dribbles or spurts, you know how it feels.  Have sympathy for your man.

Women go through a lot in their lives.  Most women will have experienced periods (oh, yeah), and many will have had little spills and “accidents” along the way.  I vividly recall being a heavy bleeder in my teens.  My mother made me sleep with towels underneath me because I was so prone to leakage.  The shame factor was high in my household.

Keep these memories at the front of your mind when dealing with your partner’s current state.  Never, ever shame him or humiliate him.  Take it in your stride if he has the occasional spill.  If things don’t improve as the months (and years) go by, you may both need to seek further help – see Alan’s article on incontinence.

The other thing I can remember from my teens and early 20s was fear of leaks in public.  I’m sure that I spent an exorbitant amount of time worrying about this.  As Alan experienced, leaking while you are out and about can be embarrassing.  Staying close to toilet facilities can be comforting.  There is an excellent public toilet map app for mobile phones. 

This app provides:

  • the location of the nearest public toilet
  • details of opening hours, accessibility, parking and other features
  • a way to plan short and longer journeys and locate toilets along the way; and
  • the ability to save toilet information and trip plans.

 

Drinking alcohol seems to make bladder problems worse.  Alan has noticed over the years that he is more likely to leak if he’s had a drink or two.  There’s a good article about this on the National Association for Continence website (which is an American site).

Dealing with Side-Effects – Erectile Problems

The other side-effect of prostate cancer surgery (and some other forms of treatment) is ED – erectile dysfunction.  The following explanation comes from an excellent resource – The Healthy Male website:

What is erectile dysfunction?

If you’re having difficulty getting or maintaining an erection, this is called erectile dysfunction. It’s not a disease, but a symptom of another problem, which might be physical, psychological, or a mixture of both.

Erectile dysfunction is very common.

An Australian survey showed that at least one in five men over the age of 40 has an erection problem, and about one in ten men are unable to have erections.

Most blokes take it for granted that they will be able to get erections whenever they want, and be “hard” enough to have penetrative sex.  Many men have no idea that things can change over the years, even without prostate cancer.  Just getting older can affect sexual performance.

When Alan came home from hospital post-surgery, his penis was a tiny, pale version of its former self.  “Percy” really looked like he had been through the wars.

The surgery usually results in men losing penile length and girth.  Not all men are aware of this beforehand and it comes as quite a shock.  Regaining an effective erection can be a significant challenge and can take months or years.

Viagra is famous – the little blue pill – but it doesn’t have quite the instantaneous effect you might expect.  All those jokes and nudge-nudge wink-wink comments really aren’t accurate or helpful.

It’s important for your partner to remember that the signals from his brain to his penis are likely to have been damaged by surgery.  They may work sometimes, but suddenly stop working right in the middle of sex.  Very unfair.

Using injection therapy is one way to get an erection after prostate cancer treatment.  Many men are understandably put off by the idea of sticking a needle into their old fellow!  Whenever Alan injects himself, he rewards himself by eating a piece of chocolate straight after the jab.

Even using the needle doesn’t guarantee a rock-hard erection.  The penis is usually engorged (full), but not really firm.  Alan has a saying that he found somewhere – it’s like trying to play snooker with a piece of cooked spaghetti.

Something else that you and your man may not be aware of (or may not fully appreciate) is that any orgasms he has from now on will be DRY, unless he is experiencing climacturia.

When his prostate was taken out, the tubes from the testicles (vas deferens) are sealed.  The prostate and seminal vesicles are removed, so semen is no longer ejaculated during orgasm.

Apart from sex being far less messy, this naturally means that your man is now infertile.  If he’s younger and you were hoping to have children, this is where I hope your doctor discussed sperm storage with you before the operation.

Alan has told me that he still finds it slightly weird to have orgasms without ejaculation.  The orgasms are intense and very enjoyable, but he does find the sensation rather strange.

New approaches to nerve grafting are being tested in Australia, with promising results at this early stage.  The new procedure hopes to help men who have not been able to regain erectile function years after their prostate surgery.  Professor Declan Murphy, urologist, discussed this with Victoria Cullen on a recent video.

Penile implants are another option for men who are unable to regain their erections after trying other methods.  This is obviously a much more expensive and invasive approach, but it does work for some men.

There are other ways your partner can help overcome his erectile dysfunction.  Generally speaking though, they all take time.

We recommend that men and their partners check out A Touchy Subject – the website of our colleague, Victoria Cullen.  She has detailed information and great videos about penile rehabilitation.

Advice for Partners During This Phase

I recommend large doses of patience, affection, perseverance and a really strong sense of humour.  You are now in the developing “new normal” phase of your life together.  This can make or break relationships.  Don’t underestimate the importance of keeping yourselves both healthy and communicating really well with one another.

Women whose partners are diagnosed with prostate cancer are often at their own life turning-point – menopause.  In my personal experience, this can throw a curve ball into the relationship.  Both your sex life and your relationship itself can be badly affected by menopause.  I have written a couple of articles in the past about this topic and I heartily recommend the Jean Hailes For Women’s Health website. 

Don’t struggle with your own issues at the same time as you’re helping your partner deal with his – get some help.

One of the most important things that I would emphasise here is communication.  If partners are able to communicate well with one another, they are much more likely to successfully navigate their “new normal”.  A healthy relationship is key to overcoming the problems caused by prostate cancer.

On a purely practical level, be as flexible as possible regarding sex.  Please don’t put it in the too hard basket (or let your partner put it there).  Even if his penis struggles to raise its head (don’t laugh), you can both still have fun (and orgasms).  Performance anxiety is a definite erection killer, so don’t focus on his ability (or inability) to get a rock-hard penis.

Whatever you both choose to do as time goes by, always keep fun and affection alive in your relationship.

This is a terribly challenging time for your partner and your response can make a substantial difference to his life.  Remember that your whole body is an erogenous zone, so why fixate on one part of it?

If you’re not able to achieve penetration and you’re both missing “sex”, you could explore some other ways to give each other pleasure.

Finally, I would stress that hope is a huge help for both of you.  Don’t get disheartened and give up.  Progress may seem slow, but my experience tells me that hope is worthwhile.

Remember why you loved your partner in the beginning and hold that memory close.

I know that this article has merely skimmed the surface of life for couples after prostate cancer; however, I really hope it helps you.

Please do get in touch with us if you want any further information – or if you have any insights that have particularly helped you.  Don’t be shy!