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What can I do if I pee or poop in my pants?

  • This is normal for you. You were born with this. You can 'help' others to find it normal, by being open about it yourself. Don't you know how to do that? You may call in the help of a professional counsellor! He or she can support you in this. Your family doctor practitioner/treating physician can refer you to a care provider that suits you.

  • Talk to other people with your condition about it. This can be a huge relief. Moreover, they may have some good tips.

How does it work with masturbation/self-gratification?

  • Do you have Hirschsprung's disease? Then masturbation works the same as for others.

  • Do you have an anorectal malformation? Then it is possible that your genitals have been laid out differently. For example, your vagina may look different or the clitoris may be in a different place. This can make it take longer before you manage to stimulate yourself. Keep experimenting. A sexologist can also give you tips to help you with this.

I'm afraid to enter into a relationship because with me it's 'different' down there. What can I do?

  • Find ways to get more self-confidence. Only when you feel comfortable in your own body can you teach others to trust and 'grow' in dealing with people in your environment.

  • Remember that everyone looks different. One boy has a long, curved penis, the other a small straight one. One girl has big pointy breasts, the other girl has small round ones. And all the vaginas look different too. So how 'different' are you?

  • Make it discussable. Openness requires guts, but it can be worth a lot.

  • Discover your own body, so you know what feels good and what is good. Sex can be a great journey of discovery: discovering yourself is a good start.

"Yes, I have spoken to friends mainly about my shame [about having a scar on sexual contact]. I didn't think that was a subject to discuss with my parents. About my first sexual contact. So I mainly talked to friends and asked them if they had any tips (...) They understood, and also said yes, it's just the way you are. That was their tip and that is now also my attitude."

When do I tell my boyfriend/girlfriend about my condition? And how do I tell it?

  • When you are sleeping together for the first time, it is not at all certain that your partner will notice that there is something 'different' about you. Still, it is useful when you talk about it. Why? Because it is difficult for yourself to keep it a secret! You remain afraid that the other person will 'discover' something. While sex is really much nicer when you feel relaxed and can be yourself.

  • Are you afraid of being rejected when you tell them? Understandable..but to achieve something in love, you have to take risks. Often it's not that bad. People fall in love with a person, not with a body. There's nothing you can do to help that you were born with this, and someone else will understand. Is his/her reaction disappointing? Well, not everyone can handle it. Then you know that he/she is not the one for you. Be proud of yourself.

  • If you don't know how to handle it, you can get help. A counsellor/sexologist can think along with you and see what suits you. There is nothing to be ashamed of: he or she will probably be used to such questions. You may ask your general practitioner or a practitioner with whom you feel familiar for a referral. He or she may know which counsellor is right for you and your question.

  • If you don't want to ask your GP for a referral to a care provider, you can also ask for advice in a more anonymous way, for example via a child helplineIt may be called a child helpline, but often you can contact them until the age of 18. If you are 18 or over, you can ask for advice anonymously via (available in Dutch and English). 

  • Discuss your situation with people with the same condition. Through a patient association, for example, you can easily get in touch with people your age who are struggling with the same questions as you.

​"So, yes, it is, you learn [in conversation with psychologist] how to talk about sexuality and your condition. You mainly learn to start conversations about it and to talk about it and stuff."

How do I tell others how to (not) touch me?

  • You have seen a lot of doctors in your life. You know better than anyone where you experience pain. It is your body and your privacy, so explain to doctors what hurts and what you do and do not want.

  • From an early age, you are used to having other people touching you, in intimate places and it can also hurt. That is why it can be more difficult for you to set your limits. If you are aware of that, you have already made a good start. You then know where your boundaries lie; the next step is to be clear about that. Your body is yours, no one is allowed to touch it without your permission.

  • Do you find it difficult to recognise and indicate your limits? You don't have to solve it on your own! Seek help. Talk about it with your parents and/or a professional counsellor.

I don't feel like having sex at all.

  • There can be many reasons or causes for this. Maybe you just haven't gotten around to it yet and it will come naturally later. Or maybe it does have to do with your condition after all. After all, as a child you have experienced a lot of 'trouble' with your body. If you're worried because you don't want to have sex, find out what's going on. Ask your family doctor/treating physician for a referral to a therapist or sexologist. You don't have to solve it all on your own.

I'm afraid of having an ‘accident’ during sex.

  • Well, I'm afraid that may happen. Please note that you are not the first one to have this happen. Still, others with this problem have sex and they have found partners who don't find this a problem.

  • Some people suffer more from involuntarily losing urine or poop than others. If you know in advance that you are going to have sex, you can prepare yourself by rinsing well.

  • Make sure you have tissues or towels at hand.

  • Here, too, the following applies: openness helps. If your partner knows what's going on, it doesn't have to be such a problem. Don't make it too hard for yourself. Humor also helps!

My vagina is small, I think it's going to hurt.

  • Probably you've already tried to see if there's anything you can get into your vagina. If you experience pain, it does not necessarily mean that you have vaginism. Still, it is useful to read the information about vaginism (see bottom of this page). There are tips and exercises to make the muscles around your vagina more supple.

  • Sex can be fun in many ways. Penetration is really not the only way to have fun sex. Go on a voyage of discovery: with yourself, but also together.

"Yeah, but still, say, that the tension is higher. That's what I've been told, anyway. By that [pelvic] physiotherapist. (...) It hasn't completely disappeared, so to speak, I think. That higher tension. Um, but the [therapy with a pelvic physiotherapist] has made it less."

“I think indeed a bit of foreplay and just not too fast [the penetration], or just take the time for it too and don't want to be too fast or too hasty or so, because then it will be all right. Yes."

I'm afraid of farting when I'm having sex. What can I do?

  • If you surf the internet, you may find this question on many forums and yes, almost everyone experiences that sometime. Explain to your partner why that can happen to you too. Openness helps and humor as well.

I want kids later. What about that?

  • ​If you have an anorectal malformation, it depends on how the condition presents in you; this varies from person to person. Talk about this with your practitioner, who can tell you more about it.

  • If you have Hirschsprung's disease, this in itself does not affect your fertility. However, you can be less fertile as a result of the many abdominal surgeries you have undergone because of your condition. These surgeries may have led to damage or adhesions, with the result that you may be less fertile. Very rarely, men with Hirschsprung's disease suffer from erectile dysfunction and ejaculation problems as a result of the many surgeries. If you are worried about your fertility/erection because of the many surgeries on your abdomen, talk to your treating physician. If you don't have a treating physician, you may get a referral from your family doctor.

"(...), if I probably would have had the right guidance, I could normally have had children; only yes, when [as a child] nobody suggested that maybe it would be a good idea to go to a specialist gynecologist."

How's that going to work out when I'm pregnant?

  • Your doctor can inform you about this. If necessary, your doctor will have you examined further to see if there are any problems you can expect with your future pregnancy and delivery.

  • If problems are to be expected, your doctor can advise you about the possibilities. If you have had surgery on your anus in the past, a caesarean section can be recommended (because of the risk of tearing). The doctor may refer you to a gynecologist or a woman's doctor who has experience with this disorder.

Want to know more?

Visit the patient organisation websites to find out about their peer support opportunities 

Chat or call via child helplines 

Magazine about sex and love for young people with a chronic illness or disability [available in Dutch, translated]

About self-gratification [Available in Dutch. Open the link in Google Chrome and make use of the translation function to translate the website: See browser settings - Languages]

About pain during sex [Available in Dutch. Open the link in Google Chrome and make use of the translation function to translate the website: See browser settings - Languages]

About vaginismus [Available in Dutch. Open the link in Google Chrome and make use of the translation function to translate the website: See browser settings - Languages]

About (no) sex drive [Available in Dutch. Open the link in Google Chrome and make use of the translation function to translate the website: See browser settings - Languages]

Tips on sex, positions and so on [Available in English and Dutch]

For all your questions about sex [Available in English and Dutch]

For more information and advice, please contact your primary practitioner or the stoma nurse at the hospital where you are being treated.

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