​​DISCLAIMER: The following information has been gathered from various sources, including Medical Professionals and experts in the field. This is in no way a medical text, but can be used as a helpful set of information that will hopefully give you an understanding and basic knowledge of the subject.
Supporting Teenage Girls Born with Anorectal Malformation
Understanding Your Body​
Girls born with an Anorectal Malformation have a rectum and anus that developed differently from other children. Because the bowel, bladder, and reproductive organs are close together, some girls may notice differences in how their body works as they grow.
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Not every girl will have problems, but understanding your body and how it works can help you feel more confident and in control of your health. Learning about your body, the changes in puberty, asking questions, and talking with your healthcare team are important steps in taking care of yourself. Confidence comes from building a positive relationship with your body and identity. Feeling comfortable with who you are and being proud of your unique experiences
Girls - normal changes to expect in puberty
Breast development - the first noticeable change for many
Hair growth under the arms and in the pubic area
Vaginal discharge as the body prepares for menstruation
Growth spurts - getting taller and gaining weight
Changes in skin - oily skin, acne may appear
First periods - menstruation
Wider hips and changes in body shape
Sweat and body odour becoming stronger
New sexual thoughts and feelings
Mood changes due to hormone shifts
Daily Bowel & Bladder Management​
Ongoing monitoring and management of bowel and/or bladder function as needed.
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Stick to your routine: Follow your scheduled toileting plan, including any prescribed laxatives, enemas, or irrigations.
Stay hydrated and eat well: Pay attention to foods that improve or worsen bowel control; everyone responds differently.
Knowing Your Plan Can Make You Feel More Confident
Accidents happen sometimes, even to people without ARM.
Know your support:
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Where to go
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Who to text
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What to carry with you
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Be Prepared: Carry a discreet hygiene kit with wipes and spare underwear for peace of mind when away from home.
Some girls with ARM may have:
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Bowel or bladder habits that feel different from peers
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Ongoing pelvic pain
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Very painful periods
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Questions about vaginal development
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Concerns about tampon use
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Worries about sexual situations
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Questions about fertility
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Worry or embarrassment that feels overwhelming
Possible Reasons for Differences in Bowel, Bladder, or Sexual Development in ARM
Differences in muscle and nerve development: The nerves that control bowel, bladder, and sexual function, and the muscles themselves, may develop differently in people with ARM. This can affect sensation, control, or how the body responds to certain signals.
Muscle tightness or scar tissue:
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Scar tissue from surgery or naturally tight muscles around the bowel, bladder, or genital area can change how the muscles move or feel. This can sometimes make activities like toileting, or sexual development feel different.
A paediatric gynecologist or Anorectal Malformation specialist can help you understand what is normal for you.
School & Social Support
Teenagers may avoid public, school, or work environments that do not provide private, accessible, or inclusive toilet facilities. This avoidance can lead to:
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Reduced social participation
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Increased isolation
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Negative impacts on education and employment opportunities
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Lower overall quality of life
Practical strategies to stay involved and supported:
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Ask for accommodations if needed, such as bathroom access, extra time, or having a trusted adult nearby
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Consider a school support plan to ensure your needs are met.
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Participate in sports and activities as appropriate
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Join support groups or online communities to connect with other teens with similar medical conditions. Meeting people who have had similar experiences as you can be helpful.
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Support Networks & Inclusion
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Adolescents with ARM thrive when supported by family, peers, healthcare professionals, educators, and community organisations.
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Address stigma and promote inclusion so teens feel understood, respected, and supported in daily life.
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Strong support networks help young people to:
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Develop meaningful relationships
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Participate fully in community life
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Pursue education and employment opportunities
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Feel confident and empowered in their identity and health journey
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Many teens with ARM share similar experiences.
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Talking to someone you trust is a sign of strength.
Relationships
Fear of rejection, embarrassment, or disclosing medical or continence-related issues can make dating or forming romantic relationships challenging. These concerns may affect emotional connection, self-esteem, and overall wellbeing.
Key Reminders:
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ARM does not make you less attractive or worthy of love.
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Trust supportive friends who respect and encourage you.
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Share about your condition only if and when you want to - you are in control.
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Healthy relationships are built on respect, kindness, and trust, not a “perfect” body.
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Talk to someone you trust about worries or fears.
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Set boundaries and only share medical history when you feel safe and ready.
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Pre-Adolescent/Adolescent Care - Girls
Management of Bowel and Bladder Function
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Ongoing monitoring and management as needed.
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Encourage independence and self-care skills.
Monitoring Puberty and Menstrual Development
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Gynaecologic/urological evaluation begins in late childhood or early adolescence
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Evaluate uterine, vaginal, and ovarian anatomy to identify structural or developmental anomalies that may explain delayed or absent menstruation.
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Track onset and regularity of menstruation.
Delayed or absent menstruation requires urgent review.
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These symptoms may indicate blocked menstruation (e.g., vaginal septum, cervical obstruction, Müllerian anomalies), which can occur in patients with ARM.
HPV vaccine information can be found here:
https://www.nhs.uk/vaccinations/hpv-vaccine/
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Recognising Abnormal Signs
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Severe or persistent pain.
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Absence of menstruation beyond expected age.
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Unusual or heavy bleeding patterns.
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Pelvic Examination & Imaging
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Pelvic examination may be indicated depending on symptoms.
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Imaging studies may be necessary to screen for obstructive anomalies.
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Psychological Support
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Address concerns regarding continence, body image, and fertility.
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Teenagers may experience distress related to reproductive or urinary health issues.
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Referral to psychological services can provide emotional support and coping strategies.
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Intimacy
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Professionals should provide a safe, age-appropriate space to discuss sexual activity, fertility expectations, and healthy relationships.
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Emphasising consent, emotional readiness, protection, and reproductive health.
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Fertility in Teens with ARM
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Most girls can become pregnant.
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Fertility can be assessed by a doctor if there are concerns.
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Some may require additional medical support
Optimal Lifelong Care Requires A Multidisciplinary Team
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Paediatric & Adult Colorectal Surgeon:
Surgeries related to Anorectal Malformation
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Paediatric & Adult Urologist:
Assesses, treats & monitors urological anomalies
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Radiologist:
Interprets imaging to assist with diagnosis
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Gastroenterologist:
Constipation/motility disorders/bowel management programs
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Specialist Nurse Urodynamics / Bowel Management:
Bowel & bladder advice, medications, enemas, training programs
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General Paediatrician:
Coordinates care. Monitor growth, development
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Endocrinologist:
Monitors growth, pubertal development, and hormonal function during adolescence
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Gynaecologist:
Adolescent / adult specialist both early and long-term care.
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Reproductive medicine specialist:
Key specialist for adolescents and adults with complex malformations
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Psychologist / Behavioural Health Specialist:
​Supports coping, body image, mental health and wellbeing
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Nutritionist / Dietitian:
Ensures optimal growth, helps manage dietary contributors to constipation or diarrhea.
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Physical Therapist:
Aids in improving continence and muscle function.
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Social Worker / Case Manager:
Helps families navigate care.
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Education Advisors:
Accessing further education, courses, training opportunities etc
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