Anyone can encounter sexual problems after urinary diversion surgery, and everyone’s experiences vary. You may feel differently about your body, which can affect your self-esteem, and you might have concerns about fertility, sexual intimacy or intercourse, all of which can be difficult to talk about. We hope this information, and the resources we signpost you to, help as you explore what sexual wellbeing will mean to you going forward.
Things can feel a little daunting, so remember to be kind to yourself. Expect to have good days and bad days, both emotionally and physically, in the weeks prior to and following surgery. Listen to how your body is recovering and take time to get to know it again. Take the journey at your own speed.
It is a good idea to have a baseline meeting with a healthcare professional who is qualified in discussing sexual wellbeing with you and, if you have a partner, maybe take them along too. This will give you the opportunity to talk openly in a confidential space in a way you may have never done before. This can help in relieving anxiety and go some way toward addressing any concerns you may have.
Talking things over
If you are in a new relationship, it is natural to feel anxious about when to tell your partner about your stoma. Ultimately, only you will know when the time feels right so trust your own judgement. If you care for each other, then you will probably find that telling will not make any difference to your feelings.
Even if you have been with your partner a long time, speaking to them about how your surgery has affected you can feel daunting. Relationships can be complex and put under strain if you’re worried and stressed about changes. So, just as you hopefully involved your partner in discussions about your surgery, you could talk through any sexual challenges you may be facing. Good communication, along with mutual trust and understanding, will be vital for you both. You can still have a fulfilling sex life after your operation; don’t be afraid to make changes to help keep your sex life satisfying, taking into account your new circumstances. There are many ways to have and maintain a lovely and fulfilling intimate relationship without having intercourse if need be.
If you and your partner struggle to talk about it together, you may want to ask your stoma nurse for a therapist referral. Psychosexual therapists are specially trained to help people talk and overcome difficulties in their sexual lives and relationships. They can act as a facilitator to help you and your partner talk things through. The number of sessions may vary, it can be very helpful to have an initial discussion to gain insight and understanding.
Sex drive
After your surgery and during follow-on treatment, you may find that you are losing interest in the sexual side of your relationship or masturbating. This may be due to soreness from your surgery, or to changes in how you are feeling; this is completely understandable as you have been through a lot. If you or your partner are worried that intimate moments might damage your stoma, then rest assured; your stoma should come to no harm.
A drop in libido is not unusual and is usually temporary. Stay affectionate in the meantime with other forms of intimacy that may not be sexual, or with hugs and cuddles.
You may like to set aside some time to have, or to give, a gentle relaxing massage without the expectation or pressure to have sex. You could always start with hands or feet, and then gradually move on to other parts of the body, like your back, another time.
Erectile dysfunction
Some men have problems with erections before their surgery, while others have problems afterward. Some go on to achieve an erection naturally, but for others it can be more difficult. It may take up to two years before you can be certain whether erectile dysfunction is permanent and whether your erectile function will come back fully. Other aspects of sexual wellbeing that can be affected include the ability to orgasm or ejaculate.
The main cause of erection problems following pelvic surgery is damage to the nerves that carry signals from the brain to the penis. There are several treatments you can try and it is best to consider all the possibilities, together with the recommendations from your nurse or doctor.
Men who have had both their bladder and prostate glands removed will never be able to ejaculate, but many do achieve orgasms.
If you are having a problem with your erection, speak either with your GP or the stoma nurse at your hospital clinic. They should be able to outline pathways for treatment, including possible referral to other specialists. Most urological departments will have access to an erectile dysfunction clinic. Remember erections are only part of the sexual wellbeing pathway and people can adapt to have a fulfilling sex life in many ways.
It is important to emphasise that it is by no means certain that problems will automatically follow urinary diversion surgery.
Treatment options for erection problems
Treatment options can include vacuum pumps, penile implants, creams, pessaries, tablets and psychosexual therapy. Talk through which options might be right for you. Here is more information on just two of those – medication and mechanical aids.
Medication
The drug which most people will have heard of is Sildenafil, better known by its trade name ‘Viagra’. This and other similar drugs (Tadalafil, Vardenafil and Avanafil) may improve your erections but your nerves need to be intact for them to be effective. Research shows that in most circumstances they are safe, but they do have side effects. The most common of these are headaches and indigestion, and some men may experience flushing or transient visual disturbances.
Don’t take Sildenafil if you are taking drugs for angina containing nitrates, as the combination can result in a severe and potentially fatal drop in blood pressure. Do discuss this with your GP, as they can advise on the best drug to suit you personally.
Other treatments include penile injections into the base of the penis (Viridal Duo, Caverject Dual Chamber and Invicorp), small waxy pellets (MUSE) inserted into the urethra, or a cream – Vitaros -which is applied at the opening of the glans (head) of the penis. Penile injections sound daunting but are extremely effective.
Mechanical devices
Vacuum constriction devices (VCD) comprise a cylinder which you place over your penis, and you create a vacuum with a pump. This causes your penis to become enlarged as blood is sucked into the shaft and you then place a tight specially designed constriction band around the base to trap blood within your penis to keep it firm. The ring should not be left on for more than thirty minutes.
Mechanical devices may be used alone or in combination with drug treatments. Using one does require some practice and can be helpful in maintaining penile length even if a constriction ring is not used.
Another option is that your penis can be splinted internally, by inserting a penile implant. This can be done by inserting two cylinders, which can be partially inflated and deflated from an internal reservoir, or fixed as malleable rods which you bend to support the erection into position. This sort of surgery will affect your natural erectile tissue, so is usually considered as a treatment of last resort, if other options have been unsuccessful. Such surgery should certainly be very carefully considered and discussed. If you had a pre-existing erectile dysfunction prior to your urinary diversion this could be a suitable option earlier in your recovery pathway.
And finally
The most important message is that while not every option will be suitable for everyone, do gather as much information as you wish, discuss the options and enjoy this aspect of your life in a way which is closest to your desires and best suits your circumstances and relationship(s).
Fertility
Because of the way in which our bodies are designed and developed, our urinary and reproductive systems are intimately related. So a urinary diversion can cause problems with sperm manufacture in your testes, or there may be a problem with the transport system, carrying sperm from your testes during ejaculation.
If your surgery was performed for a non-malignant condition, your bladder and reproductive organs may not have been removed, so you may need to consider contraceptives if you’re not looking to have children.
If you do want children, tell your stoma nurse before surgery and ahead of any treatment, as you may wish to consider semen banking, when your semen is frozen and stored for use later.
Chemotherapy, radiotherapy, surgery or a combination of these can cause problems with fertility and may not be reversible. If you wish to start a family, both you and your partner will need an assessment, probably co-ordinated by a specialist in your local fertility unit.
Fertility treatment
IVF (in vitro fertilisation) is a primary option for couples wanting a baby but the man has fertility issues due to a urinary diversion.
Access to IVF on the NHS depends on your situation, and where you live. The National Institute for Health and Care Excellence (NICE) fertility guidelines make recommendations about who should have access to IVF treatment on the NHS in England and Wales. However, the final decision about who can have NHS-funded IVF in England is made by local integrated care boards (ICBs), and their criteria may be stricter than those recommended by NICE.
If you’re not eligible for NHS treatment, or you decide to pay for IVF, you can have treatment at a private clinic. Costs vary, but one cycle of treatment may cost up to £5,000 or more.
More information regarding your options can often be found on the website of your local fertility centre, or alternatively from the Human Fertilisation and Embryology Authority: www.hfea.gov.uk.
Learning that you may not be able to have the family you dreamed of, or that there will be long term sexual consequences from your stoma surgery, can be devastating. There are organisations listed below which may be able to help, and your stoma care nurse should be able to point you to local sources too.
Looking forward
Being worried about your sex life following surgery is understandable. You may well recover over time without extra help, or you may want to be referred for additional support. Either way, there is no wrong or right path, and no set timescale to follow. Progress in your own time.
Some people find greater closeness with their partner as they reinvent their sex lives, while others agree to let this side of their relationship go. But if you do need support, then please ask for it, and develop a plan which is right for you. Always remember that being proactive early on following surgery is advised as you can’t necessarily turn the clock back in restoring sexual wellbeing, particularly erectile function when erectile tissue has changed over time.
Masturbation is also helpful during recovery, when the time is right for you, and you never know what life has in store!
Further reading
- Sexuality and Relationships – part of Dansac’s Living with a Stoma series
- Sex and Parenthood – part of Hollister’s Lifestyle Series
- IVF – NHS Health A to Z