Women, and men, can encounter sexual difficulties after urinary diversion surgery, and everyone’s experiences vary. You may feel differently about your body, which can affect your self-esteem. You might also 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 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.
Talking things over
If you are in a new relationship, it’s natural to feel anxious about when to tell your partner about your urinary diversion. 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 them 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. Like you, they may also be wondering about how your sex life will be different. All relationships are complex and can be put under strain if you’re worried and stressed about changes.
So, just as you involved your partner in discussions about your surgery, you should 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.
If you and your partner struggle to talk about it together, you may want to ask your stoma specialist for a therapist referral. Psychosexual therapists are specially trained to help people overcome difficulties in their sexual lives and relationships. They can act as a facilitator to help you and your partner talk things through in one session, while some people find a programme of therapy is what they need.
Sex drive
After your surgery and during follow-on treatment, you may find that you’re losing interest in the sexual side of your relationship. This may be due to soreness from your surgery, or to changes in how you are feeling. If you have a urostomy, you or your partner may be worried that intimate moments might damage it. Rest assured; your stoma will come to no harm.
A drop in libido is not unusual and is usually temporary. Stay affectionate in the meantime, with hugs and cuddles.
You could explore your sexual self with self-play/masturbation. It can be helpful to learn and understand how your body responds, to help you communicate that to others. For some, this might be seen as a taboo or embarrassing, but it truly shouldn’t be. This maybe a whole new you to explore!
Feeling comfortable with your bag
If you have a urostomy, remember to empty your bag and check that it is secure before getting intimate. Smaller and opaque pouches are available, and some come with gel to absorb wee so that you can feel more relaxed. Should you wish to cover your bag by wearing lingerie, there are companies offering a variety of attractive styles for women with a stoma, including underwear that is open at the crotch.
Pain or discomfort
Pain during penetrative sex is the most commonly reported side effect for women following stoma surgery. This may be because of bodily changes following surgery or due to reduced sexual desire and arousal. Stress and lack of lubrication can also contribute to the problem. Feeling aroused helps with lubrication. You may wish to explore ways in which you can enhance this. There are books to read or listen to as well as podcasts that can help you explore erotica.
These issues usually resolve over time, but if you are finding intercourse painful, experimenting with your partner can help you find more comfortable positions. You might also find it helpful to use a vaginal dilator (also known as a ‘trainer’) – practising with it can be a good way to know how to relax and position yourself. You can also use depth limiting penetration rings which are stretchy and can be stacked and help control insertion of a penis, dilator or sex toy.
If vaginal dryness is a problem, applying a personal lubricant will help. They are available from supermarkets, pharmacies and online. Silicone lubricants stay wetter longer, water soluble can dry out quicker. Vaginal moisturisers can also be helpful.
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. It doesn’t have to be just about intercourse, outercourse (non-penetrative sexual activity) can be fun, bringing pleasure and closeness. Kissing, massage, touching, using sex toys and oral sex are some examples. But if you do need support, then please ask for it, and develop a plan which is right for you.
Pregnancy
Having a baby is something many women look forward to and that doesn’t need to change just because you wee differently. In fact, the majority of women with a urinary diversion are able to conceive and enjoy a normal pregnancy. Do speak to your GP or urologist and ask any questions. Having this conversation will help you know what to expect.
If you are unable to conceive naturally – perhaps because of the condition that led to your surgery – it can feel 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.
Pregnancy testing – Wee samples taken from any type of urinary diversion occasionally provide an unreliable result, so to test accurately you will need to provide a blood sample.
Once your pregnancy is confirmed, liaison between your obstetrician, urologist and GP will help ensure that you receive the optimum care possible. Regular checks are essential so that should you encounter any complications, you can be treated promptly.
Antenatal exercises – If you want to attend antenatal exercise classes, it’s probably a good idea to let the class leader know about your urinary diversion. If you wear a stoma bag, remember to empty it before the class starts.
Ultrasound scans
Ultrasound scans are one of the many exciting parts of pregnancy.
Do bear in mind that, as you no longer have a bladder, it can sometimes be more difficult for the person performing your early scans to get a clear view of the baby developing inside you. Later on in your pregnancy, your baby’s head may be positioned beneath your stoma, making it harder to measure the circumference, but vaginal scans should provide a clearer picture.
The gel used on your tummy can seep under your bag and loosen it, so check beforehand that the pouch you are wearing is secure and change it if necessary.
Stoma and skin changes
As your skin and muscles stretch and your tummy gets bigger, your stoma is likely to enlarge and change shape. If your stoma retracts or becomes longer, you may need a pouch with a mouldable opening so that it fits snugly around your stoma. Your stoma nurse will be able to advise you about this.
In the latter stages of pregnancy, your bump may hide your stoma from view so you might find it helpful to use a mirror or ask your partner to help position your bag correctly.
Hormonal changes may cause your skin to become more dry so your bag might not adhere as well as usual. Using extra adhesives should help with this. As always, looking after the skin around your stoma and ensuring good adhesion are important to prevent leakage.
Urinary tract infections
During pregnancy, hormonal changes make the tubes from your kidneys (ureters) more dilated, allowing bacteria to reach your kidneys more easily. Keeping well hydrated by drinking plenty of water (at least two to three litres a day) will help minimise your risk of developing a urinary tract infection (UTI). Using water soluble lubricants for sexual intercourse can also be helpful if you are prone to UTIs.
Signs of a UTI include cloudy, strong-smelling wee, flu-like symptoms and pain around the kidney area. If you suspect you have an infection, seek medical advice straight away. Left untreated, a UTI can cause serious complications, such as kidney failure or premature labour.
Your GP will need a sample of your wee to test for infection. This must be taken directly from your urostomy, either with a catheter or via the ‘clean catch’ method (holding the sample bottle underneath your stoma to catch drops of wee, making sure the container does not touch your stoma). If you have a continent urinary diversion or a neo-bladder, a sterile catheter must be used to collect your sample.
Whichever type of urinary diversion you have, it is important that the person analysing your wee is aware of your situation so that the right antibiotic can be prescribed.
Preparing to have your baby
It’s natural to feel concerned about how labour will be for you, but most women with a urinary diversion experience no complications giving birth. If your reproductive organs are undamaged and working normally after surgery, there should be no issues.
Sometimes a caesarean section delivery is necessary. In this case, your doctor will discuss it with you in advance so that you know what to expect.
If you have a urostomy and plan to give birth vaginally, connecting to a night drainage system will be helpful during labour as this will stop your pouch dislodging when full.
Be prepared with adequate urostomy equipment, as your pouch will need changing after delivery due to change in size and firmness of your tummy. If you have a continent urinary pouch or a neo-bladder, an indwelling catheter may be helpful during the later stages of labour to keep your pouch/bladder empty.
After your baby is born
When you have had your baby, changes to the shape and size of your stoma may mean trying different pouches to find what works best for you. As hormonal changes will still be affecting your skin, you may need to swap to a different adhesive too.
Emptying your bag before feeding your baby will help you feel comfortable as you nurse your new arrival.
Sometimes, pregnancy can alter the function and appearance of your kidneys, so your urologist may wish to perform some tests.
And finally…
While it is important to be aware of difficulties that may sometimes occur, please don’t be alarmed by anything you have read here. Remember that most women with a urinary diversion go through pregnancy and labour complication free, and do speak to your GP, urologist or midwife if you have any concerns.
Good luck – and enjoy parenthood!
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
Organisations which may be able to help
- College of Sexual and Relationship Therapists – COSRT
- Relate
- Human Fertility and Embryology Authority
- The Mental Health Foundation
Download this information as a leaflet
