Disability and sex: dealing with incontinence

This is an updated post from our archives. In this article, Tuppy Owens, founder of Outsiders, addresses a reader’s concerns about managing incontinence and its impact on social and sexual life, offering advice on continence management and personal experiences from others facing similar challenges.

In our series on disability and sex, expert and resident agony aunt Tuppy – who runs Outsiders, a private club for disabled people looking for a relationship – answers your questions. This week, how to cope with incontinence in the bedroom.

Dear Aunty Tuppy,

I thoroughly enjoyed my 20s and 30s, both socially and in my work. But life has suddenly gone down hill…

As I was approaching 40 without a partner, I decided to have a baby on my own. When I gave birth I became ripped around the birth canal, and now have no use of my anal sphincter. I do love my child, but want to continue to enjoy a social and sexual life.

I desperately want to be attractive to men, but I am nervous of them finding out that I am incontinent. For this reason, I don’t want a colostomy as I hope that, one day soon, they will be able to mend my sphincter.

I feel truly disabled and ashamed. I wonder if you have any advice?

Georgina

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Dear Georgina,

I hope I am going to be able to help you become more relaxed about your condition and make the most of life again. I doubt your sphincter can be mended, so I would thoroughly recommend you discuss your situation with your local continence nurse. They are usually very open to discussing the nitty gritty and will probably recommend an ostomy. I will write about that in more detail later.

But first, I would like to share with you some of the experiences of other women who have incontinence. Let me explain what I do.

I run a club called Outsiders, which is a place for physically and socially disabled people to make new friends, enjoy peer support and find partners. Outsiders has had many members with incontinence – both those with ostomies and catheters, and those without. They have all been embarrassed about their incontinence, often feeling guilty and ashamed. They haven’t wanted to talk about it, and have tried to conceal their condition to everyone.

One member, who I will call Clare, has spina bifida and an ostomy. One day, she came to our Outsiders London lunch and told me she had spent the night with a blind member (let’s call him John) and then dashed home (50 miles) to empty her colostomy bag. I asked her whether she would like me to tell John about her ostomy, so she didn’t have to face it. She agreed and promptly hid from view.

I went over to John, sat down and said: “Clare is embarrassed to let you know, but she has a colostomy bag on her tummy – do you mind?” “No, of course not!” he replied. After that, John and Clare became an item.

Another woman I know, who has a suprapubic catherer and MS, has fully embraced how her body is, and has indeed advised other disabled woman on being more confident. Her message: “We have to think about, and connect with our bodies in a way other people don’t. Because of this, we become far more aware, which makes us interesting as lovers.” You can see this conversation on the end of our film on sexual respect.

Getting an ostomy

An ostomy can be more reassuring than managing without it. It takes a bit of time to become accustomed to, but eventually it will simply become a part of you.

You can also cover your ostomy up for sex, with pretty pouches that you can purchase online. You can find out more information on the website Vegan Ostomy. They should also always be emptied before sex.

What I tell every woman with an ostomy is that although squeamish men might not like the idea of sex with you, most would not care. The thing to do is to talk about your situation and embarrassment – and tell your new friend what to expect when you have sex with them.

If your injury makes sexual intercourse painful, then please remember that intercourse is not the be-all and end-all of sexual enjoyment. I would recommend you go on a Tantric training weekend to learn about goal-free sex, where you have the type of sex which suits you. Shakti Tantra courses are the best.

Support is available

You may be interested to know that there will shortly be a conference about and for women in your predicament at the Royal Society of Medicine in central London. I shall be going along with my colleague Jo King, who teaches women how to become sexually confident. Jo is not speaking, but I am sure she will get an opportunity to tell the audience about her work, as this is exactly what women like you need.

The conference is called Injuries in Childbirth: Raising Awareness and restoring Dignity in Mothers – the problem affecting one in ten mothers. It will take place on Wednesday 22nd March. To book, just contact Samar Malik on 0207 290 3867

You might also like to know about the new Mothers with Anal Sphincter Injuries Foundation (MASIC), which has just recently been set up by one of the conference speakers.

Georgina, and all readers with continence problems, I hope this has been helpful and encouraging.

By Tuppy Owens

Originally posted on 02/02/2017 @ 12:20 am