Living with a urinary catheter
Sex and intimate relationships
Disability can affect a relationship both in positive and negative ways, but having a catheter can sometimes be more difficult for people who want a good sexual relationship.
Dave says that having a disability can strain a relationship but that a difficult situation can...
Dave says that having a disability can strain a relationship but that a difficult situation can...
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It puts a lot of strain on all relationships. And it’s certainly difficult to continue to develop relationships so-called normally alongside having to change your life and have changes forced upon your life. So it does alter dynamics.
And nobody likes to think that they are dependent on help from other people. But unfortunately, bits and pieces along the way, you are dependent. And that is difficult and puts strains on, does put strains on relationships.
But there are also sides to difficult situations that can strengthen relationships as well. So there are various aspects to consider when it comes to relationships, both positive and negative I think.
An active sex life can be possible with either a urethral or a suprapubic catheter, but it may be easier with a suprapubic catheter than with a urethral catheter (see below).
Before sex, a man can tape a urethral catheter along the shaft of the penis and cover it with a condom, a woman can tape it up along her abdomen. But people may not like having sex with a urethral catheter in place, and some find it uncomfortable. Sara’s urethral catheter made having sex unpleasant because the catheter moved around and caused pain. Iain, a 35-year-old with MS, also found that his urethral catheter made sex uncomfortable.
Having sex with a urethral catheter made Iain sore. He found it much easier with a suprapubic...
Having sex with a urethral catheter made Iain sore. He found it much easier with a suprapubic...
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I went for initially a urethral catheter permanently. And that was alright but it wasn’t what I wanted to stay with ‘cos things were, urethral catheters are all well and good. However, being a male, to even have something as simple as sex, you couldn’t easily do so with a catheter in situ.
So I then made an appointment to see my urologist consultant again at the hospital. I said, “Okay can you do this through the suprapubic method instead, then if I want to have sex I can easily, without having to try and tie something back.” So that was like, “No problems.”
I mean, again speaking as a male, with a urethral catheter you can have sex. But the way they describe to do it sounds very sore, and is sore to do that because you have to try and tape it [the catheter] back, which is pulling on, a lot on it.
And if you have a suprapubic, there’s nothing in the way of you having sex easily. So it’s an easy thing to do as you would normally. So that’s the biggest advantage I think of suprapubic over urethral, it’s that simple really. It’s nothing; it’s not something in the way of having sex if you choose to.
Jade, a 22-year-old with Fowler’s Syndrome, had a suprapubic catheter for a number of years. During sex, she pushed her catheter to one side but sometimes it got in the way. She had it removed and started intermittent self catheterisation (ISC). Then she became pregnant.
Jade and her boyfriend were glad when her suprapubic catheter was removed and she could self...
Jade and her boyfriend were glad when her suprapubic catheter was removed and she could self...
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So I used to just move my tube over here till it would all be over to one side. But obviously in the heat of the moment you don’t really want to be like, “Oh, hang on, I’ve just got to move my wee bag out the way” kind of thing. But that is what it used to be like.
And maybe it’s because I’m the type of person that can have a joke and stuff. I used to be like, “Oh, I’ve just got to move my wee bag out the way.” But obviously in, I wish I didn’t have to say that. But that is what I used to have to say. And we used to kind of like joke it off and stuff.
So with the boyfriend, catheters weren’t a problem?
No. I was with him when I had my suprapubic catheter, and he was the one that was like to me, “Come on, let’s sort out this self-catheterising situation.” So we did.
That must have made it much easier.
Yes, he much preferred that. He was like, “I haven’t got that tube thing to worry about”, because we used to call it the tube. That was what it was called. Because sometimes you’d be worried in case you rolled into it or something like that. So I always used to have to flop it to one side.
But after the catheter was removed he suddenly used to think it was really weird because he didn’t have to worry where it was any more.
Yes, so we decided to have a baby and then obviously I got pregnant. And everything was fine. I carried on self-catheterising. But from about 16 weeks pregnant it got increasingly harder to catheterise. Every day it would be more of a struggle than the previous day, more painful, harder to get in, things like that.
Frances, on the other hand, said that her suprapubic catheter did not affect her sex life. Jennifer was also adamant that having a catheter did not affect her relationships.
A suprapubic catheter can affect self-image too. Vicky had a sky diving accident nine years ago and was paralysed at the age of 31. She has avoided sexual relationships since.
Carol had a urethral catheter for four months. During that time she said she lacked the ‘confidence’ to have sex. Her leg bag felt ‘just too obvious’ and the catheter had changed how she felt about her body.
Alex needed a catheter because of incontinence but worried that, if she had a catheter, her husband would find her sexually unattractive. She chose a suprapubic catheter but was apprehensive when she found that the surgeon had placed it very low down, near to her pubic bone and clitoris (see ‘Indwelling catheters' suprapubic catheters’). Her surgeon had put it there without discussing it because he assumed she might want to wear a bikini and hide the scar.
When Alex first had a suprapubic catheter it was placed very low down. This worried her because...
When Alex first had a suprapubic catheter it was placed very low down. This worried her because...
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Then I decided, yes, I would go for it, I would have a suprapubic catheter, and I assumed, because nobody actually talked to me about the siting of the catheter, I assumed they hadn’t discussed it with me because there was only one place it could go. I really had very little knowledge then about catheters and your bladder and where they can be placed.
Where did you think it was going to go?
Well I just thought it had to go wherever they put it. And I thought the doctors were best placed to decide where it could go and there was only one place so they’d put it wherever the one place was. So I thought I didn’t need, that I couldn’t have a conversation with them and especially since nobody brought it up. Not my consultant and not the continence nurse and, although she was very good, and I’d had quite a few discussions with her about my body image, weirdly enough the whole siting of it never came up.
So I went for the operation which was done under sedation, very simple, for me anyway, it was. I just fell asleep and woke up and it was all done and very neatly. But when I woke up and I looked at where it was put, I was really alarmed because it was very low down on my kind of pubic bone, really near my vagina and really near my clitoris.
And I thought, “Oh my God”, and I didn’t say this to anyone, not my husband, nobody. But I thought, “Oh my God, am I going to be able to have sex again, will it get in the way?” And then I thought, “Am I even going to be able to have an orgasm again?” Because I had like this plastic tube right near a very sensitive place but I didn’t say anything about this.
It did take me, and I only realised afterwards, it took me about three months to recover my full kind of health and energy from having the procedure. But I think that, it felt like it was quite an undertaking for my body, but that’s just my body.
And interestingly enough I have had it re-sited and the operation that I had when I had it re-sited, that took me a couple of days to recover my full energy and everything.
Some women we talked to had found blood in the urine after penetrative sex. They were alarmed – no one had told them that this might happen.
After Alex had sex, she found blood in her urine. Her consultant suggested she close her flip...
After Alex had sex, she found blood in her urine. Her consultant suggested she close her flip...
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The first time I had sex was actually three months after the operation because I just, I didn’t feel like sex before. Everything felt a bit too tender, plus I was just really worried about what would happen.
We had sex when we were away on a holiday and I could have sex, we did have sex, I could still have an orgasm. That was fantastic. That was good. One thing that did happen was the first time and quite a few subsequent times, each time I would have sex I would bleed into my catheter bag.
So the first time that happened I completely freaked out. We were abroad. I thought, “Oh my God, what if something serious has happened.” Luckily my husband, very calm, he said, “Look, just drink lots of water and let’s see what it’s like in the morning.” And it was fine. It was absolutely fine.
And I have, in the intervening years, asked my consultant and my urologist, my continence nurse and several other health professionals in that area why I bleed sometimes when I have penetrative sex and what I can do about it. And every single one, up to two years ago, so that was six years of people saying, “I’ve no idea, I’ve never heard of that happening with anybody else.” And I can guarantee I will not be the only one that this has happened to but I think the problem is nobody ever discusses sex with their health professionals. So people could have been having this, women having this problem but just not wanting to talk about it with anybody.
After six years I asked a new young urologist about this problem with the bleeding and she said to me, because I wear a valve, I use a flip flow valve on my catheter which I open and close at various times, it’s mostly open but I do close it for at least ten minutes twice a day because it’s better for your bladder health.
Anyway she said to me, “Try closing your valve just before, you know like five minutes before you’re going to have sex and that might help because what might be happening is because your valve is open, your bladder is pretty empty. So that when you have sex, the end of the catheter might be kind of irritating and rubbing in your bladder. So that might cause the bleeding.”
She didn’t know a 100% but she said, “Try it”. So I did try it and that has helped. It doesn’t, I don’t never get it but I get it very rarely now. And also I have to say that the bleeding didn’t hurt. It didn’t interfere with my enjoyment of sex at all. It basically after ten minutes or so it stops and the urine is completely clear.
Jade had blood in her urine after sex. She explained why this might have happened and why she...
Jade had blood in her urine after sex. She explained why this might have happened and why she...
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Obviously I didn’t talk about this, but obviously when you were having sex, every time after I used to have sex, every time I emptied my bladder, my urine would be red, where obviously the banging of movement used to move the balloon inside your bladder, which used to irritate it. So then it would bleed constantly.
So then I used to not want to have sex because, when I had a suprapubic catheter, because it would be so uncomfortable for days. It wasn’t, I used to think, “Is it even worth it?”
Did you ever ask the doctor about that, about the bleeding?
Yes. He used to just say it was the movement, he used to say it was the movement and there’s not a lot you can do about it.
So having the suprapubic catheter made sex a bit painful?
Not a bit. A lot.
Oh, really?
A lot, yes. Like, you know, me and my boyfriend, we used to have conversations about it, because he used to obviously want to do it more than what I wanted to do. But then he used to understand that I couldn’t be going through the pain. And also when I used to have sex as well, it used to make me more likely to have a urine infection. I used to think, “Oh, I can’t be dealing with having another urine infection. So I just won’t do anything at all.” That’s what it was like.
So it really affects your life, doesn’t it?
Yes. And then once I had my suprapubic catheter, where I used to have it changed so much, it gave me scar tissue, which gave me adhesions, which then made sex even more painful. So I had to have another operation to get my adhesions separated to even be able to have sex. Because it got to the point where I couldn’t actually have sex because everything was so painful. And that was a side effect of having a suprapubic catheter.
These were adhesions in the bladder?
Yes, and all round it, from the constant movement of my suprapubic catheter. I had to have the adhesions separated about six months after I’d finally had my suprapubic catheter out, because I was in constant pain. And it was only when my urologist said, “Right, you need to go and see a gynaecologist.” And he said, “Your adhesions are the worst I’ve ever seen and no wonder you’re in so much pain.”
Jade found it very hard to talk to her doctor about her sexual problems. Stuart, another person we interviewed, pointed out that, unfortunately, medical staff do not always consider sex an important subject.
Stuart said that a catheter might affect a sexual relationship and felt that people would find...
Stuart said that a catheter might affect a sexual relationship and felt that people would find...
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Having an in-dwelling catheter, a suprapubic, it’s not something that you shout from the roof tops. It does have inevitably a mental consequence on sexual relationships because you’ve got this pipe sticking out of you unexpectedly. And a bag of urine on the end of it, which is not the most romantic aspect of oneself.
Once people get used to it, that’s fine. But it, particularly for a younger person, it could have a very substantial effect on whether they felt confident enough to approach the opposite sex in that manner.
Yes. And is there information, again, that health professionals could give about this, or is it more how you feel within yourself?
I was most interested to find that, when I was working on a panel of medical people putting together a questionnaire to do with long-term catheterisation, nobody had considered the aspect of sex. And that it might inhibit that, and the input on that came entirely from myself. And that was in a variety of I think about 8 different aspects of the medical field, not one of them had considered that side. And it doesn’t appear on any paperwork that one sees. Why they think because you’ve had a suprapubic catheter put in, or that any other form of catheter, that that means sex is now out of the window, I don’t know. It doesn’t have to be, but no information.
Is there any message you could give to somebody? You mentioned it could be particularly harder for younger people? But for younger and older people alike, anything, because they might not find this information anywhere else?
At the end of the day it’s something that you have got to overcome as an individual. But it could be helped if you are given some guidance in the form of even something as basic as ‘you may feel inhibited with sexual relationships because you’ve got a catheter. There is no need to feel this way. It doesn’t affect your abilities and it’s clinically and physically quite separate from any inter-person contact.’
Discuss it, explain it, and in the majority of cases I think one would find an acceptance. And that the more secretive it’s all kept, like most things, the more the mystery grows and therefore it becomes a taboo.
After Gavin’s accident and spinal injury, he and his wife wanted to have a second child so Gavin felt that a urethral catheter was unsuitable for him.
Gavin explains why he found a suprapubic better than a urethral catheter.
Gavin explains why he found a suprapubic better than a urethral catheter.
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When you were at home and you had that [a urethral catheter] for about a month while you were at home, how was that?
By that time I’d learnt to live with it, but it was more inconvenient. If there was no other solution, I would have lived with it, no problem. But everything from sort of cleaning it, changing it, living with it, transferring, just making sure it’s not in the way and you don’t catch it, everything was just more cumbersome and just a bit more awkward [than a suprapubic catheter].
Yes. So that has quite a big impact then on your day to day life doesn’t it?
Yeah, it did do. And also we decided to go ahead and try for a second child as well, so that obviously had complications there. So yeah it just wasn’t suitable for me really.
Gavin describes the help he got and the equipment he needed so he could father a child.
Gavin describes the help he got and the equipment he needed so he could father a child.
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The first thing I did was make an appointment at the spinal injury unit with one of the consultants there that specialised in this area. And that was mainly to talk about the various options available to us. And also whether we were mentally ready as a couple, whether it was the most sensible thing to do considering what we’d just been through. And just making sure it was the right time. So that was the first conversation we had.
Once we’d had that conversation, we’d agreed what was the best way to go forward, and that was to purchase a piece of equipment called FertiCare, which is quite expensive. I think about four or five hundred pounds. And I suppose in the simplest terms it’s like a male vibrator. But we managed to get a second hand one for a fraction of the cost, I can’t remember now.
From?
It was from another spinally injured patient on one of the forum sites on the internet. He was selling it and yeah we bought that. Which doesn’t sound like the most, you know the cleanest thing to do, but it’s a medical piece of equipment that’s cleaned, and you know it is fine. And this piece of equipment, like I said, it’s like a male vibrator. And it’s just the tip of the piece of equipment that vibrates which you put on the end of your penis. And that stimulates you to ejaculate. Which you would then catch and then inseminate into your partner.
Yeah. Was it, you inseminate yourself or?
No, you do it yourself, yeah the doctor just advised us the simplest method, with a syringe. And thankfully, and luckily, it happened the first time. And again, with spinal injuries there are other side effects of autonomic dysreflexia, which you would get with any other sort of pain or sensation like an overfull bladder, bowel or a broken toe that you wasn’t aware of.
So is there anything you would recommend or advise to people who are in the situation now, being spinally injured and thinking we would like to start a family? Anything with hindsight that you would advise or any tips?
Get as much advice as you can. If you are spinal injured, go to your spinal unit. I’m sure they would have lots and lots of advice. Speak to as many people as you could on forums. They’re usually very experienced and got a lot of good advice. Particularly mothers that were spinal injured and gone through pregnancy and lived with a child, bringing them up even independently a lot of them. But a lot of the charities also run courses on parenting. They can give you a lot of advice. But really just be open-minded and don’t be put off by anything. Because it is worth it really at the end.
Some older men said they hadn’t entirely lost their libido. They had a close emotional bond with their wives but sex was no longer part of their relationship. Pat said the dynamics of a relationship can change when someone becomes disabled. Although her relationship with her husband, Rob, had changed and she was now his carer, she wanted to ‘think of him as my husband’. Although at first she did everything for him, over time Rob had resumed some of the things he’d done before he got ill. Alok and his wife were both in their 30s when he became paralysed from his neck down after a car accident. He now lives in a residential care home. He knew that he could no longer be the husband he was before his accident. Although he and his wife were still together, he said he could understand if she wanted to leave him and start again with someone new. Such changes in a relationship related to the disability rather than having the catheter.
Last reviewed October 2018.
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