MasterClass presentation cloaca Lesley Breech

1. Cloacal Anomalies:
Gynecology Perspective
MasterClass
Swiss Society for Pediatric Urology
November 24 & 25, 2023
Lesley Breech, M.D.
Professor of Gynecology
Director, Division of Pediatric & Adolescent Gynecology
Cincinnati Children’s Hospital Medical Center

2. Outline
• Gynecologic concerns associated with
ARM/Cloaca
• Recommended workup and management
• Timing of interventions and imaging
• Long term Gynecologic and Reproductive
considerations

3. Most important
gynecologic concerns
• Adequately drain
hydrocolpos
• Be opportunistic
about defining
gynecologic anatomy
• Consider options for
vaginal reconstruction
• Be aware of
Menstruation!!
• Think of reproduction
– Method of delivery
– Uterine aspects of
reproduction

4. Anorectal Malformations
• Include complete examination,
vaginoscopy in operative evaluation
– Vaginal septum may be present
• 4/104 rectoperineal patients (3.8%)
• 21/318 rectovestibular patients (6.6%)
• 291/489 cloaca patients (59%)
– Vaginal agenesis may be present
• 34/318 rectovestibular patients (10.7%)

7. Hydrocolpos
• Newborn issue
• Hydrocolpos
(collection of fluid in
the vaginal space)
• Etiology unknown

8. Treatment Options
• Intermittent catheterization of the common channel
– Many teams use this as a first line
– May be concerning with solitary kidney, atretic
channel or significant kidney impairment
• Percutaneous indwelling tube drainage
– Often placed via interventional radiology
• Vaginostomy
– Historically created via open approach with colostomy
creation
– May be performed with laparoscopy
• Vesicostomy
– Essentially a historical management approach

9. • Vaginostomy
– Drain fluid from vagina through stoma
(catheter) placed transabdominally
– Create window in vaginal septum to drain
both hemivaginas
• Or a second tube may be needed
• Follow up imaging to ensure adequate
drainage

10. Hydrocolpos review
• 411 females with cloaca reviewed
• 116 patients with hydrocolpos (28%)
– 93 (81%) bilateral hemivaginas, 19 single vagina, 4
unknown
• 63 (55%) did not receive timely
diagnosis and treatment
– Risk of sepsis, urinary tract infections, failure to thrive,
rupture of hydrocolpos, hydronephrosis
Bischoff, Levitt, Breech, Louden, Peña. Hydrocolpos in
Cloacal Malformations. J Ped Surg 2010; 45: 1241-45

11. Hydrocolpos review
• 645 females with cloaca identified
• 218 identified with hydrocolpos (34%)
– 155/211 (73.5%) with uterovaginal duplication
– 171/211 (81.0%) with any uterovaginal anomaly
• 196 with common channel length recorded
– 136 patients (69.4%) with length > 3cm
– 60 patients (30.6%) with length < 3cm
Chan S et al. Association of Uterovaginal Anomalies with Hydrocolpos and Common Channel Length in
Patients with Cloacal Malformations. Presented at North American Society for Pediatric and Adolescent
Gynecology Annual Meeting, April 16-18, 2015

18. GYN take home point
• Assess Müllerian anatomy with any intra-
abdominal procedure
– Allows delineation of uterine anatomy
• Possible risk of menstrual obstruction
• Future obstetric potential

19. Ways to Determine the Reproductive
Anatomy
• Directed exam with vaginoscopy
• During laparotomy/laparoscopy
– Direct inspection
– Check patency
• Other methods
– Imaging studies
• Distal colostogram, 3D imaging
• Hysterosalpingogram

20. Vaginoscopy - Initial

21. Vaginoscopy
After definitive surgery

22. During Laparotomy

23. During Laparoscopy
Left Müllerian System

24. During Laparoscopy
Right Müllerian System

25. BLADDER
DISTAL COLON
RIGHT HEMIVAGINA
---------------------------------------------------LEFT HEMIVAGINA
---------------------------------------------RECTAL FISTULA
VAGINOSTOMY TUBE---------

26. Prenatally diagnosed
cloaca
Bilateral hydrocolpos
-kidneys-
1 1
hemivaginas

27. Laparoscopic view of separate hemiuteri
Laparoscopy

28. How to determine the PATENCY of
the Internal Anatomy
• At the definitive surgical repair
(if abdominal surgery needed)
• At colostomy closure

29. Patent Reproductive Tract
• The cervix and vagina must communicate
and be “open” or patent to allow flow of
menses.
– Confirmation of mucus at cervix can be
reassuring

30. Cannulation of
fallopian tube

31. Saline pertubation of
Fallopian tube

33. Saline Pertubation
to determine Müllerian patency
• Retrospective review of cloaca patients (from 2005 to
2022)
• Menstrual patency
– Absence of obstruction on pelvic imaging and/or absence
of obstruction symptoms within 2 years of menarche, or in
patients with amenorrhea, studies completed between the
ages of 9 to 13 yrs
• 219 patients with cloaca were identified, 58 (26%) of
whom had undergone SP. A total of 26 patients met
inclusion criteria. 21/26 (81%) were noted to have a
patent Müllerian system by SP.
– 20/21 (95%) of these patients were confirmed to have
subsequent patency. 1 patient with previous patency on
SP was noted to have later obstruction identified on
imaging.

35. Saline Pertubation
to determine Müllerian patency
• The positive predictive value of saline perturbation was 60%,
while the negative predictive value was 95%.
• One patient who underwent SP had a confirmed patent
Müllerian system subsequently developed a unilateral
hydrosalpinx.
– Possible delayed post-operative complication was the
development of a peritoneal fluid collection after
puberty/menarche.
• Premenarchal SP at time of other medically indicated surgery
(laparoscopic or open) among individuals with cloaca is a safe
and reliable procedure to identify those individuals who are
low risk for obstruction, with a negative predictive value of
95%.

36. Menstruation
• Factors affecting the onset of periods
(menarche)
– Genetic factors
– Ovarian production of hormones (estradiol)
– Development of the uterus/uteri
– Persistence and patency of the
reproductive tract
• Absent development or resection of poorly
developed structures

37. Patent Reproductive Tract
• Any obstruction along the path of
menstrual flow will produce a collection of
accumulated menstrual blood.
– Causes significant pain
– Adversely affect reproductive potential

45. Menstrual Issues
• 198 patients with a cloaca
• 22 patients who were more than 14 yrs old
• 7 Normal menstruation (32%)
• 6 Primary amenorrhea (absence of periods)
• 9 Pelvic collections of menstrual blood that
required operation (41%)
Levitt MA, Stein DM, Peña A. J Ped Surg 1998; 33: 188-
193.

46. • 7 Normal menstruation
• Symmetrical gynecologic structures
• 6 Primary amenorrhea
• Inadequately developed or absent (50%) uteri
• 9 Pelvic collections
• Asymmetric gynecologic structures (6/9)
• 4/9 with absent vagina

47. London Review
80 patients have been treated over 30 years
• 41 patients were evaluated at puberty
• 28 had uterine function
• 13 (32%) were menstruating normally
• 15 (36%) presented with obstruction of
menstrual flow
– All required surgery (5 hysterectomy)
– 6/10 girls (families) were incorrectly told that they did
not have any uterine structures
Warne SA et al. J Urology 2003; 170: 1493-96.

48. Proposed Management Strategy
for Outflow Tract Obstruction (OTO)
(modify for planned intervention)
Phases of Müllerian Outflow Tract Obstruction
To understand the different management aspects of outflow tract
obstruction, we put
forth five phases with included management recommendations
(Table 2):
1. Caregiver and patient education and evaluation before
obstruction;
2. Presentation, diagnosis, and symptom temporization;
3. Readiness assessment;
4. Peri-procedural management;
5. Long-term surveillance
Sack, B.S.; Speck, K.E.; Hryhorczuk, A.L.; Sandberg, D.E.; Kraft, K.H.; Ralls, M.W.; Keegan, C.E.; Quint, E.H.; Dendrinos, M.L.
An Interdisciplinary Approach to Mullerian Outflow Tract Obstruction Associated with Cloacal Malformation
and Cloacal Exstrophy. J. Clin. Med. 2022, 11(15), 4408;

49. Sack, B.S.; Speck, K.E.; Hryhorczuk, A.L.; Sandberg, D.E.; Kraft, K.H.; Ralls, M.W.; Keegan, C.E.; Quint, E.H.; Dendrinos, M.L. An
Interdisciplinary Approach to Mullerian Outflow Tract Obstruction Associated with Cloacal Malformation and Cloacal Exstrophy. J.
Clin. Med. 2022, 11(15), 4408.

50. Detection of Obstruction
• Determine anatomy and level of
obstruction with imaging
• Determine amount of pain
• Suppress menses with gynecology input
– Symptom relief
– Resolution of significant inflammation
– Increase likelihood of retention of structure
and preservation of fertility

51. Müllerian Management
Symmetric Müllerian structures
• Bilateral well-developed, patent structures
– Observation with serial US at puberty
• Bilateral atretic (non-patent) structures
– Cannot definitively determine potential
– Observation with serial US at puberty
– Discuss/caution family and providers

52. Müllerian Management
Asymmetric Müllerian structures
• Retain well-developed, patent structure
– Observation with serial US at puberty
• Consider management/follow up of atretic
(non-patent) structures
– Opportunity for collaboration with Gynecology
– Long term follow up/surveillance

53. Other potential gynecological concerns
• Cysts
– Complex in nature, hydrosalpinx?
– Ovarian or peritoneal?
– More common after cloacal exstrophy repair?
• Endometriosis
– Endometrium found outside the uterus
– Retrograde (reverse) menstrual flow
• Chronic pelvic pain

54. CCHMC Recommended
Reproductive Management - Cloaca
• Delineate reproductive anatomy as much as
possible in infancy
– Counsel parents, providers regarding expectations and
precautions
• Begin US evaluation of reproductive structures
after the onset of puberty (breast development)
– Continue every 6 – 9 months
– Be aware of anatomy and review actual images
• Continue serial US evaluation until 6 months after
the onset of menarche

56. Vaginal
Reconstruction

57. Vaginal Reconstruction
Goals
• Unify vaginas to create a single vaginal
outflow tract
• Retain as much native vaginal tissue as
possible
• Minimize graft tissue, as possible
• Minimize need for additional surgery
• Optimize functional outcome in the future

58. Cloacal vaginal reconstruction
• Timing has historically accompanied
definitive separation of urinary, bowel and
reproductive tracts
• What if the vagina(s) do not reach the
introitus?
– Interposition graft
– Manipulation of vaginal tissue
– Use of mucosalized common channel

63. Rectum
Bladder

64. Bladder
Rectum
hemi-vaginas

65. rectum
bladder

68. • Longitudinal
Divisional of
the
Rectum

70. Rectum
Neo-
vagina

71. Advantages and disadvantages of
complete reconstruction as an infant
Advantages
• Minimize number of
“big” surgeries
• Historical experience
in the field
• Technically easier
patient size
– Infant v. adolescent
Disadvantages
• Use of suboptimal
vaginal graft tissue
– Short - healing
– Medium – graft
concerns
– Long term –
sexual/OB issues
• Need for additional
surgeries

72. Possible disadvantages of
bowel neovagina
• Questionable growth
• Neovaginal prolapse
• Diversion colitis
• Ulcerative colitis
• Mucus production
• Malignant potential
Kokcu A. Eur J Gynaec Oncol 2011, Burgu B. J Pediatr Urol 2007,
Hensle TW. J Urol 2006,
Syed HA. BJU Int 2001.

73. Complex Reconstruction Patients
• 134 patients were identified who underwent
complex vaginoplasty between 1989-2008
• Tissue used for repair
– 61 pts with rectum
– 49 pts with small bowel
– 18 pts with sigmoid colon
– 5 pts with descending colon
– 1 pt with bladder
• Mean follow-up time was 2.94 yrs since first
vaginal surgery
Hermann L, Huppert J, Peña A, Levitt M, Breech L.
Bowel vaginoplasty associated with complex anorectal malformations:
A retrospective review of 131 cases. Oral abstract presentation 2009.

74. Complex Reconstruction Patients
Results
• Overall complication rate was 34%
(45/134 patients)
14 % vaginal stenosis
13 % prolapse
6 % mucus production
0.7 % fistula formation

75. Stenosis Prolapse Mucus
Rectum (61) 5/61 (8%) 10/61 (16%) Yes
Small Bowel (49) 9/49 (18%) 4/49 (8%) No
Sigmoid (18) 2/18 (11%) 3/18 (16%) No
Colon (5) 0/5 (0%) 1/5 (20%) No
Hermann L, Huppert J, Peña A, Levitt M, Breech L.
Bowel vaginoplasty associated with complex anorectal malformations: A retrospective review of
131 cases.
Oral abstract presentation 2009 NASPAG ACRM, April 2009.

76. Neovaginal Malignancy Risk
• 23 reported cases of neovaginal malignancy
– 14 cases of squamous cell carcinoma
– 6 cases of adenocarcinoma
– 2 cases of unknown type
– 1 case of verrucous carcinoma
• Of the cases of adenocarcinoma, 4/6 cases
segment of bowel (sigmoid 2, colon 1, and
ileum 1); one was skin graft, one unknown
Kokcu A et al. Eur J Gynaec Oncol 2011; 5: 588-89.

77. Neovaginal Malignancy Risk
• Mean time to development of cancer = 19.2 y
• Mean time in bowel segments = 24 y
• Recommended follow up??
– 10 years after reconstruction (Fernandes)
• Surveillance exams or vaginoscopy
– Cytologic screening? (Fernandes, Claret)
– No cytologic screening, + HPV vaccine
(ACOG)
Claret AR, Jimenez AM, et al. J Obstet Gynaecol 2017, 37; 131-35.
Fernandes HM, Manolitsas TP, Jobling TW. J Lower Genital Tract Disease
18: E43-45.

78. Alternative management
strategies
• What are management options if vaginal reconstruction is
deferred?
• Urinary and/or colorectal interim surgical needs
– Other surgical “pit stops” to consider vaginal reconstruction
• Pubertal, menstrual management will be necessary
– Careful attention to the timing, tempo of puberty
– Imaging – pelvic ultrasound, pelvic MRI
– Menstrual suppression – needed or not?
– “Controlled” upper vaginal growth/distension
– Assessment of readiness
– Need for Gynecology integration within Colorectal teams

79. Surgical Innovation in Vaginal
Reconstruction
• Readdress timing
– Adolescent v. infant
• Consider other graft tissue(s)
– Buccal graft or tissue engineering v. bowel
grafts
• Role of minimally invasive techniques
– Robotic/MIS approaches may allow better
dissection/mobilization

80. Vaginoplasty - Buccal Mucosa
• Role for augmentation vaginoplasty
• Case reports detailing use in adolescence for
patients with suboptimal vaginal
reconstruction in infancy or complex
adrenogenital conditions.
– Cloacal exstrophy
– Severely virilized CAH
J Ped Uro 2006; 2 :486-88.
JPAG 2010; 23: e39-42.

81. Buccal Graft Vaginoplasty

82. Buccal Mucosa
Characteristics
• Possible better graft
specimen
• Easily accessible
source
• No visible scarring
• Cosmetic result
• Hospitalization length
• Discomfort, healing at
graft site
• Postoperative
dilatation
• Need longer follow-up

83. Goals for Adolescence and
Young Adulthood
• Adequate introitus
• Adequate perineal body
• Ability to engage in comfortable, satisfying
sexual activity
• Ability to become and maintain pregnancy

84. Young women should be examined
after puberty
• Confirm adequacy of perineal body
• May need introitoplasty for sexual intimacy
• Introitoplasty should be performed in
young women after pubertal development
and menstruation, before sexual debut
– Need follow-up to determine timing
• Likely will require short term vaginal
dilation

88. London Review
• Adult follow-up of 21 patients
• 18/21 (86%) had an adequate vagina with no
menstrual problems
– 9/18 progressed normally from initial surgery to
adulthood w/o need for further vaginal surgery
• 12/21 (57%) are or have been sexually active
– 4/21 (20%) required additional vaginal surgery to
facilitate intercourse
Warne SA et al. J Urology 2003; 170: 1493-96.

89. Long term Outcomes
• Do women with ARM have different
sexual, reproductive and obstetric
outcomes than the general population?
• Do sexual, reproductive and pregnancy
outcomes differ in women with cloaca v.
other ARM diagnoses?

90. Long term Outcomes
• IRB review, exempt
• Long term outcome survey
– Age 18 years and older
• Gynecologic , reproductive, sexual,
obstetric data
– FSFI (Female Sexual Function Index)
• ARM diagnosis and treatment

92. Long term Outcomes
• 192 patients
– 188 eligible patients (4 deceased)
– 80 responses (2 incomplete), 5 declined
• Women diagnosed with cloaca were more
likely to have an additional gynecological
condition (e.g. PID, Infertility, PCOS,
Endometriosis) than non-cloaca ARM
patients (p < 0.05)

93. Sexual Outcomes
• Mean age was 27 years old (ranged from
18 to 72 years old).
• 43 patients (55%) had a cloaca and most
reported history of vaginal reconstruction
(75%).
• 20 subjects (26%) had partial or complete
vaginal replacement with colon, rectum,
ileum, bladder or buccal mucosa.

94. Vaginal Replacement
(partial or complete)
Type of vaginal graft (N=20, 26%)
Rectum N= 11
Colon N = 2
Sigmoid N = 2
Ileum N = 2
Buccal N = 2
Bladder N = 1
Colon
10%
Sigmoid
10%
Ileum
10 %
Buccal
10%
Rectum
55%
Bladder
5%

95. Sexual Outcomes
• 32 (41%) subjects reported no sexual
activity in past 4 weeks.
• Excluded for the analysis of the FSFI
domains of lubrication, orgasm, pain and
satisfaction, and for the full FSFI scores.

96. Sexual Outcomes
• Full FSFI scores were found to be similar
between the subjects with cloaca
compared to all other ARM (p=0.99).
– With or without a history of vaginal
reconstruction (p=0.54), vaginal replacement
(p=0.87) and introitoplasty (p=0.74).
• All FSFI scores were significantly lower in
subjects with ARM compared to controls,
but found to be significantly better
compared to subjects with FSAD.

97. Conclusions
• All women with h/o repaired ARM have an overall
similar prognosis for sexual function.
• Vaginal reconstruction and replacement do not
seem to have a negative impact on sexual
function.
• Sexual function in women with ARM appears to
be:
– inferior to the general population
– superior to women with FSAD

98. Pregnancy Data
• 25 patients, 40 pregnancies
– 35 live births (one neonatal death)
– 22 CS, 7 VD, 1 undelivered, 5 unknown
– 5 miscarriages
• ARM diagnoses
– Rectoperineal fistula 1
– Rectovestibular fistula 14
– Cloaca 9
– Rectovaginal fistula 1
Chan S, Schwartz BI, Alexander M, Martinez-Leo B, Bischoff A, Dickie B, Frischer
J, Levitt M, Pena A, Breech, L.
Pregnancy Outcomes in Patients with Anorectal Malformations. Poster
presentation, NASPAG, Orlando, FL. April 2015

99. Pt # Age Diagnosis # of Preg Outcome Mode Delivery Notes
32 33 Covered cloacal exstrophy ?3 ? has 3 sons, single uterus
67 42 Cloaca 1 C/S IVF
133 35 Vestibular fistula ?1 ? delivered 5/2001, single uterus
168 30 Vestibular fistula 1 C/S spontaneous, delivered 5/2010
188 35 Vestibular vs Cloaca 1 C/S
307 30 Cloaca (posterior) 1 36 wks C/S spontaneous, infant L horn (uterine didelphys)
316 28 Cloaca 3 2 children, 1 miscarriage C/S x2
349 45 Cloaca 1 miscarriage (5mo IUFD) IVF, anti-phospholipid AB, uterine didelphys
362 30 Cloaca (posterior) 1 C/S h/o endometriosis (noted after delivery)
549 79 Vestibular fistula 1 twins C/S prior to PSARP (deceased – cancer)
551 24 Vestibular fistula 1 37+ wks, scheduled C/S C/S spontaneous, delivered 3/3/14
634 35 Vaginal fistula (H-type) 1 C/S bladder injury during C/S
690 45 Vestibular fistula 2 C/S x2
766 37 Vestibular fistula 2 1st premature/died C/S
1144 73 Vestibular fistula 1 C/S spontaneous, prior to PSARP
1341 33 Vestibular fistula 1 SVD
1572 26 Vestibular fistula 1 33+ wks, PPROM C/S delivered 3/15/14 (footling breech), 4.25 lbs
3234 54 Vestibular fistula 1 ?39 wks C/S spontaneous, prior to PSARP
x 45 Vestibular fistula 2 C/S x2 spontaneous w/ herbs/acupuncture (no IVF)
2952 34 Vestibular fistula 1 ?32 wks C/S spontaneous, 6lbs 4oz
10004 42 Cloaca 1 32 wks, PPROM/PTL C/S IVF – 3 attempts, 4lbs 3oz
10006 38 Perineal fistula 4 ?term, prolonged labor SVD x4 spontaneous, episiotomy, 3kg
46 Vestibular fistula 5 2 children, miscarriage x3 SVD x2 spontaneous
563 26 Cloaca (posterior) 1 due date early 3/2015, uterine didelphys
46 Vestibular fistula 2 C/S x2 unicornuate uterus (right)

100. Conclusion
• Our study suggests that female ARM patients are
able to conceive spontaneously.
• The majority of our patients delivered via C-
section
– All patients who had a cloaca delivered by C-section
– Indications included prior repair, non-vertex
presentation, or provider/patient preference
• The majority of premature deliveries occurred
after 32 weeks GA.

101. Additional pregnancy data
• PubMed search
• 17 women
– 13 cloaca, 2 “rectovaginal fistula”, 2 pt
exstrophy
• 24 pregnancies, 19 livebirths (79%)
– Only 2 vaginal deliveries (one cloaca)
– 16% AART
– Average EGA = 32.5 weeks (25% term)
Vilanova-Sancez A et al. JPAG 2019; 32: 7-14.

102. Additional pregnancy data
• Retrospective review
• 37 women
– 12 cloaca, 20 rectovestibular fistula
• 59 pregnancies, 48 livebirths (80%)
– 16% had vaginal delivery (no cloaca)
– No pregnancies in pts w/bowel neovagina
– Unclear AART or EGAs
Reppucci, ML et al. JPS 2023; 58: 1450-57.

103. Delivery Data
• Systematic search prior to July 2022
• Only 5 eligible articles
• Eight women
– 4+(?) cloaca
• 13 attempted vaginal deliveries
– Two required eventual CS
– One experienced significant laceration
• Conclusion: lacking adequate data
deWaal, AC et al. BMC Pregnancy and Childbirth 2023; 23: 94.

104. Current Recommendations for Method
of Delivery
• Perineal and vestibular fistula repair
– Candidates for normal spontaneous
vaginal delivery with good surgical repair
• Cloacal repair
– Extensive surgical repair with good
functional outcome
– Possible neovaginal graft
– Should be delivered by cesarean section

105. A Qualitative Assessment of
Sexual Health in Adults with
Cloacal Anomalies:
What Patients Want Their Colorectal
Team to Know
Lissa Yu MD, Michelle McGowan PhD, Kara Bendle RN,
Chelsea Mullins RN, Tara Streich-Tilles MD, Lesley Breech MD
Cincinnati Children’s Hospital and Medical Center

106. Impact of Cloaca
• We sought to assess patient perspectives on
relationships, sexual function, and reproduction
• 20 patients, semi-structured discussions over
Zoom
– Five focus groups
– Three one-on-one interviews
• IRB exemption granted

107. Total Patients 20
Age (y) 30.9±9.76
Partner Status Married/Living with partner 9 (45%)
Common Channel length (cm) (n=14) 4.4±1.27
Vaginal Tissue
Type
Native vagina 15 (75%)
Other (buccal, skin, bowel) 5 (25%)
Parenting Total parents 5 (25%)
Carried own pregnancy 1 (5%)

108. Bowel control affects relationships
“Here you are trying to be sexy and I'm like, hey, real quick, not real quick, for
a few hours, I'm just going to go to the bathroom. (Laughs) Is
that happening? Like… that's not a thing.” (age 29)
“I know not to do an enema before going to have sex. Okay, because…
after you do an enema, You feel really worn out.” (age 22)
• Barriers to intimacy include:
- Disclosure of bowel management to romantic partners
- Arranging time for flushes and recovery

109. Patients want to have enjoyable sex
• 17 patients have attempted vaginal penetration
• 13 patients were satisfied with their ability to have intimacy
“I would just like cry like in the middle, like no guy wants to see that, you know
what I mean? He's like, what did I do wrong?” (age 26)
“I don't have any pain. Sometimes I can’t feel down there. I think from, just from
all the surgeries and like the nerve endings. […] My husband doesn't know this,
but I don't feel a whole lot.” (age 39)
“(I wanted) just a little more stretch here, or whatever. So we took some tissue
[…] from the inside of my jaw and put it down there and it actually helped, you
know in the sex department, […] sex has been pleasurable.” (age 38)

110. Patients worry about pregnancy
• Commonly cited concerns about carrying
own pregnancy
– Change in bowel and bladder function
– Ability to carry a pregnancy
– Delivery planning
– Risk of obstetric complications
"I can't fathom [...] just growing a child in that environment, because I'm
risking my Malone, I'm risking my Mitrofanoff, I'm risking my augmented
bladder. I'm risking my already constipated bowels." (age 35)

111. Conclusions
• Bowel control impacts ability to have romantic
relationships
• Sex and family building can be difficult, but patients
desire options and guidance about risks and
implications
• Involving gynecologists in care for patients with ARM
can help guide longitudinal reproductive decision-
making

112. Any Questions?