Testosterone or estrogen are necessary to maintain healthy adult bones. If you were born without functioning gonads (ovaries or testes), or if your gonads have been removed, you should be under an endocrinologist’s care and maintain hormone replacement therapy for life.
Many people with intersex conditions, having developed a distrust or aversion for medical people, avoid medical care and drop hormone replacement therapy which was prescribed during puberty. This can result in extreme osteoporosis (brittle bones). Osteoporosis worsens silently, but at advanced stages it can destroy your quality of life. Persons with advanced osteoporosis are vulnerable to frequent bone fractures, especially of the spine, hip, and wrist. These fractures can be caused by a small amount of force, and are extremely painful and debilitating. Each spine fracture may put you flat on your back for one to two months.
If you have been without gonads or hormone replacement therapy for years, it is vital to get a bone density scan performed, to evaluate the condition of your bones (a simple, non-invasive procedure using a specialized x-ray machine), and to seek the advice of an endocrinologist in order to establish a regimen of hormone replacement therapy that works for you. If you have had bad experience in the past with hormones, we encourage you to find an endocrinologist who will work with you to adjust the mix and schedule of hormones until you find what works. If your bone density is low, your endocrinologist will probably recommend calcium supplements and weight-bearing exercise (not swimming!) to maintain density.
If your bone density scan is performed on a DEXA machine, make certain to do any follow-up scans on the same machine, and with the same reader.
A number of drugs currently in the biomedical news may prove useful for rebuilding lost bone density. If your bone density is low, check in with a qualified specialist regularly for the latest information.
The danger of osteoporosis is considerably worse for people with intersex conditions than for post-menopausal women, because they will be without hormones for many decades.
If you’re having trouble talking with your doctor about HRT (hormone replacement therapy), take a look at what Dr. Aron Sousa of our Medical Advisory Board has found regarding risks and benefits.
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