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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. Your penis may not get hard as well, for example. 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 mainly talked to friends about my shame [about having a scar during sexual contact]. I didn't think that was a subject to talk about 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 how you are. That was their tip, say, and 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 helpline. It 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.

"I had a girl reject me and then I said, could it be that it's because of my condition? That girl in turn got angry, who do you really think I am? I'm not going to reject you because you happen to have that condition, am I? Surely none of that would matter? Well of course she was right about that too. So she was offended that I mentioned the possibility at all that she rejected me because of that. Yes, girls reacted differently to that too."

"So, yes it is, you learn [in conversation with psychologist] especially actually talking about sexuality and your condition. You mainly learn to start conversations about it and talk to each other about it and so on."

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 are just not ready 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.

"And if you're not feeling your best, you don't make advances towards your boy/girlfriend either. And then s/he thinks, what's the matter? Am I not good enough? S/he will think that again when you have a down period in your relationship. You can have a dip as a couple for a while, then that can make things a bit more complicated."

I am 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!

  • You can also consider an anal tampon

I'm afraid of farting when I have 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.

My penis doesn't get stiff properly.

  • Sex can be nice in many ways. Penetration is really not the only way to have nice sex. Go exploring: with yourself, but also together!

  • Are you not ejaculating well on your own? Then you need guts. Ask your GP for a referral to a sexologist. Nothing wrong with that! They will find your question very common and come up with solutions that really help you. So... dare to ask!

I come/ejaculate too quickly. What can I do?

  • First and foremost: practice a lot! You will then automatically learn to extend it. You can teach yourself to control it: you will get a better sense of when your orgasm is coming and learn to delay it.

  • And well, what is fast? Five minutes, three minutes, one minute? It's only too soon if it bothers you.

No semen is coming out of me. How come?

  • It may be that when you ejaculate, no semen/sperm comes out of your penis. Your semen goes in a different direction and ends up in your bladder and stays there. This in itself does not hurt. You can enjoy the orgasm just as much and you simply urinate the semen later.

  • It can be a problem if you want children later, though. But that can be solved. For example, your sperm can be filtered out of your urine. Talk to your practitioner about this, who can tell you more about it. The practitioner can refer you to a urologist.

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.

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, can be 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 ejaculating/coming too quickly and tricks to delay it [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 'dry ejaculation' [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) desire for 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]

Erection problems [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, etc. [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 care nurse at the hospital where you are being treated.

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