Treatment of intersex needs open discussionBMJ 2002; 324 doi: https://doi.org/10.1136/bmj.324.7342.919 (Published 13 April 2002) Cite this as: BMJ 2002;324:919
- Cull Melissa (), founder, Adrenal Hyperplasia Network
EDITOR—It is excellent to see surgery for ambiguous genitalia and intersex being openly discussed.1 2 3 4 5 These articles prove what patients have been saying for years, that surgery can, and does, cause damage to sexual function. This research is long overdue and most welcomed by patients and parents. I agree that cosmetic genital surgery needs to be reassessed.
Parents and patients need to have all the facts explained before opting for irreversible genital surgery. This is especially so in the changing NHS that is aiming to be more patient led. Fully informed consent is important (particularly after the Bristol and Alder Hey scandals), and may be lacking in patients with ambiguous genitalia or intersex as surgery is often done on children before they can give consent. If parents are to make these decisions they need the full facts or they will end up with feelings of extreme guilt for damaging their child's sexual function by having early surgery. Ambiguous genitalia or intersex are nothing to be ashamed of; being more open can only help people lead better lives. More research is needed into whether leaving surgery until adolescence will have psychological effects compared with surgery in early infancy as is current practice in the thought that it reinforces sexual identity. This gives rise to the necessity for multidisciplinary treatment centres to treat the conditions with a more holistic approach encompassing surgery, endocrinology, and psychology.
Two conferences in 2000 brought together professionals and patient support groups to present their views. Universities have also invited patient groups to speak to medical students to learn from patients the effect on lives of people with ambiguous genitalia.
Support groups are professional and not disgruntled haters of doctors. They work closely with the medical profession to improve treatment, raise awareness, and support patients. Patients have the opportunity to air their views only in the media, which can often distort important issues.
When doctors come to our conferences and take time to listen to patients, parents, and support groups, they learn more than they do in the few minutes of a consultation. Patients are more likely to open up and talk to doctors who take an interest in how conditions affect people's quality of life and everyday living.