What impact can an anorectal malformation or Hirschsprung's disease have on my perception of sexuality?

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Both physically and mentally, these congenital conditions can influence your sexuality. Physically, because the anatomy of your lower body is different from that of most women, or because you may have problems with the uncontrolled loss of stools or urine. Mentally, because as a child you have undergone many medical tests and treatments over the years and have experienced pain in your lower body, and maybe still. Click here for an overview of possible physical and psychological problems.

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How does my condition affect me when I enter into relationships?

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A lot has happened to your lower body during your childhood –and probably also after your childhood. You have had surgery early on. Your doctors and parents probably had to perform unpleasant and nasty procedures on you, for example when rinsing or stretching your anus. This can still have unintended effects. It is good to become aware of such effects. Then you can do something about it (either yourself or with the help of a sexologist), so that you can enjoy your body, intimacy and sex more in the future.

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Constraints

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You may unconsciously associate your lower body with pain and misery. This can prevent you from enjoying sex or even entering into relationships. It can also have another subconscious effect: you may have trouble setting boundaries when it comes to unwanted touches. After all, as a child, you have grown accustomed to being touched in these places by adults, and it often hurt too.

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Shame

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Maybe you wore or wear a stoma bag or use diapers to collect urine or faeces. Maybe you have a lot of scars on your lower body because of all the operations. Or maybe you're afraid of accidents or farting during sex and intimacy. Relaxing your abdomen causes these accidents sooner, but a relaxed body is also needed to enjoy sex. All this can evoke feelings of shame in you. Maybe even so bad, that you avoid sex and intimacy or don't feel like it at all anymore. It can help to discuss these feelings with your partner or a sexologist.

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"It didn't take long before it [no more shame for scar] just went well for me, in my opinion, say, believed that it's just the way it is. It took a few months, but that was it then. Let me say; after that it went well too."

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The shape of your lower body

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Especially with an anorectal malformation, your buttocks, anus and genitals can have a different build than that of most other people. This can lead to physical limitations for sex. Maybe not all sexual acts or positions are possible because of your build or maybe it hurts.

If you have Hirschsprung's disease, you may have a lot of scars or you may be wearing a stoma bag. Again, it can evoke feelings of shame in you and lead you to avoid intimacy. Yet you can and may also enjoy intimacy! Don't just carry it around with you, make your feelings discussible and, if necessary, seek the help of a sexologist or other expert.

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How does my condition affect masturbation/self-gratification?

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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 are laid out differently. For example, your vagina may look different or the clitoris may be in a different place. It may take longer before it is possible to stimulate yourself. Keep experimenting. A sexologist can also give you tips to help you with this.

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What sexual problems can play a role and what are possible solutions?

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Problems with your vagina

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Is your vagina narrow because of surgery in the past? Then you may have problems with penetration: maybe your partner can't get his penis in your vagina, or it hurts you a lot. Maybe you can't tolerate tampons either. You may also suffer from a dry vagina. Do you suffer from pain during sex, a dry vagina or problems with a narrow vagina? There is something you can do about that, for example by training your pelvic floor muscles. You can also get advice from a sexologist.

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Problems with incontinence or farting

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Are you afraid of losing urine or faeces uncontrollably, or farting during sex and intimacy? Accidentally farting in bed happens to many people when they are completely relaxed (while making love or sleeping). By being open about this to your partner, you can avoid uncomfortable situations. Not sure how and when to talk about this? You may call in the help of a sexologist or other therapist. Having contact with other people with the same difficulties as you (via patient associations) can also help you overcome barriers.

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Problems with your libido, no desire for sex

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Do you have little or no desire for sex? This may have something to do with your condition. Don't hesitate to contact a sexologist or other professional counsellor. Sometimes sexologists are in the hospital team and have specific knowledge about sexual problems that can be related to abdominal abnormalities. A sexologist can help you to find out where your resistance to sex comes from and can help you to remove obstacles and find solutions, so that you can also enjoy intimacy and sex.

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Problems with fertility and pregnancy

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Do you wonder about your fertility? Are you worried about what a possible pregnancy will be like for you? This is understandable, because an anorectal malformation can have had an influence on the construction of your uterus, ovaries and fallopian tubes. With both anorectal malformations and Hirschsprung's disease it is also possible that you have damage or adhesions to your abdomen as a result of a previous operation. If you have had surgery on your anus, you may only be able to give birth through a caesarean section (and not naturally) because of the risk of tearing. If you have any questions, you can contact your family doctor. He or she may refer you to a gynecologist for advice.

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How can I get professional support?

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In case of problems, you may contact your (former) chief practitioner. He or she will consider which specialist (e.g. gynecologist, sexologist or pelvic physiotherapist) can best support you with certain problems. You can also contact your family doctor for a referral.