Welcome to the Adult area of our website. This page is under development. Please contact us if you are interested in contributing to this section or have ideas for other topics. All postings are done anonymously to protect individual privacy.
Please select from the following:
Online discussion group for adults living with classic bladder exstrophy, epispadias or cloacal exstrophy
We invite you to join a online discussion group for adults living with classic bladder exstrophy, epispadias or cloacal exstrophy. While not administered by the ABC, this group is strictly monitored and controlled by a social worker and is available only to adult BE patients. Please email bneilson@sickkids.on.ca for information on how to join.
Adults with Exstrophy Listserve
This listserve is operated by the Hospital for Sick Children and is maintained by Barbara Neilson, a social worker that works with exstrophy families. Only adults with exstrophy can join this listserve. Please email to inquire about signing up.
FAQ: Will I Be Able to Have Children?
In most cases, the answer to this is YES. The majority of people with exstrophy can reproduce, and their children are not born with bladder exstrophy. However, before a woman becomes pregnant, it is important for her to discuss her plans with her doctor. In almost every pregnancy in women with exstrophy, the uterus prolapses (drops down) during the late stages, which means that it in a sense falls out of the vagina. A woman will not be n any danger during the time, nor will the baby, if proper medical attention is given. Delivery may be vaginally or by a cesarean section, depending upon her condition at the time of labor.
She may also need to have her vagina widened slightly to make menstruation and sexual intercourse easier for her. This would be done at puberty.
In the many cases, men with exstrophy are capable of fathering children. A man can have sexual intercourse with normal sensations but he may need medical assistance when it comes time to have children. In men who have had bladder exstrophy, retrograde ejaculation often occurs. When that happens, the semen is sent backwards into the bladder instead of toward the outside of the body. The sperm can be recovered from the bladder, when the man wishes to father a child, and it is placed inside his wife's vagina by artificial insemination.
The high position of the testicles may pose an additional problem for some men. When the testicles are very close to the body, they are kept at too high a temperature. A higher than normal temperature can damage the sperm produced in the testis.
Epididymitis, or infection of the testicles (storage site for sperm and semen) is a common complaint among older exstrophy patients. Epididymitis can be treated with antibiotics, which should be kept on hand for immediate use.
Information we would like to include here, with your help
We hope in the future to provide adults with more information such as:
- Sexuality
- Physicians ,psychologists, obstetricians familiar with BE
- Women's issues:
- Pregnancy issues
- Risk of osteoporosis (ie related to Osteotomy surgery)
- Menopause
- Uterine And Bladder Prolapse
- Male issues:
- Male 'menopause
- Intercourse and psychological issues
- Arthritis
- Cancer risks
- Issues related to Ostomy, Urostomy, etc Osteotomy surgery. Pros and cons for surgery sooner rather than later in life (risk of prolapse?).
- Other issues that adults patients face as they mature.
- Links to Medical Supplies/organizations on the internet useful.
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