Vaginal Agenesis Pediatric Research and Clinical Trials

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Research & Innovation

Boston Children’s Hospital develops treatments informed by evidenced based research.  Children’s is home to the world’s most extensive research enterprise at a pediatric hospital. 

Non-surgical option for vaginal agenesis.

In a 12 year retrospective study performed at BCH, in which 69 females with vaginal agenesis participated in a progressive perineal dilation program, progressive perineal dilation was found to be a safe and effective minimally invasive alternative to surgery. Progressive perineal dilation is a nonsurgical, outpatient and self-administered treatment that avoids the need for anesthesia and is more cost effective than invasive surgical options. This is a self-administered treatment in which the patient uses a vaginal dilator to place pressure on the introital dimple between the anus and urethra to create a neovagina.  Since progressive perineal dilation does not require operation, the American College of Obstetricians and Gynecologists recommend it as the first option to create a neovagina.

Currently, 92% of the participants achieved functional success at a median of 18.7 months of treatment, or about a year and a half.  At the time the research paper was written, there was only an 88% success rate, but it is currently 92% since several more participants successfully completed dilation after the paper was written. Functional success in this study was defined as the ability to achieve sexual intercourse or when the neovagina could accept the dilator at a vaginal depth of 7 cm.  The perineal dilation program recommended that the patients use a vaginal dilator two to three times a day for 20 minutes.

Neither Boston Children’s Hospital or the Gynecology Program at Children’s unreservedly endorses the information found at other websites mentioned on our Web pages.

Online health chats for your teenage daughter

Having vaginal agenesis is an issue your daughter may not want others to know about, but it is helpful to share experiences with peers.  Children’s has come up with a solution for children to be able to anonymously share experiences with each other with different conditions.  One evening a month Phaedra Thomas, RN, BSN, moderates chats for young women with MRKH to chat with each other about similar issues and concerns. Learn how your daughter can attend an MRKH online chat.

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- Sandra L. Fenwick, President and CEO

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