MasterClass presentation cloaca Lesley Breech
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This document discusses cloacal anomalies and gynecologic perspectives on their management. It covers important gynecologic concerns like adequately draining hydrocolpos, defining gynecologic anatomy, and considering options for vaginal reconstruction. It also discusses determining reproductive anatomy, managing menstrual issues, and long term gynecologic and reproductive considerations like method of delivery. Surgical techniques for addressing issues like hydrocolpos and performing vaginal reconstruction are described.
![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)](https://image.slidesharecdn.com/masterclasspresentationcloaca-240220105601-ea21441f/85/MasterClass-presentation-cloaca-Lesley-Breech-109-320.jpg)
![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)](https://image.slidesharecdn.com/masterclasspresentationcloaca-240220105601-ea21441f/85/MasterClass-presentation-cloaca-Lesley-Breech-110-320.jpg)
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
- 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
- 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
- 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
- 65. rectum bladder
- 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.
- 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?