|
Page 4 of 4
AISSG The Netherlands
Tel.: (038) 269845
AIS Selbsthilfegruppe
Postfach 7
71 201 Rottenburg am Neckar
Germany
AISSG Australia
Mary Russell
PO Box 3371
Logan Hyperdrome
Loganholme
Queensland 4129
Australia
Ambiguous Genitalia Support Network (AGSN)
428 East Elm St. #4/D
Lodi, CA 95 240 - 23 10
USA
Tel.: 209 - 369 - 0414
OUR KIDS
web: http://rdz.acor.org/lists/our-kids/
Kidnet
web: http://www.kidnet.de/
Kindernetzwerk e.V. für kranke und behinderte Kinder und Jugendliche in der Gesellschaft
Hanauer Str. 15
63 739 Aschaffenburg
Germany
Tel.: +49 - 60 21 - 120 30
Fax: +49 - 60 21 - 124 46
Vaginoplasty Support Network (North)
c/o Ms Sheila Naish
Royd Well Counselling
35 Royd Terrace
Hebden Bridge, West Yorks HX7 7BT
UK
Vaginoplasty Network (South)
c/o Hilary Everett
Gynaecology Social Worker
Social Services Dept.
St. Bartholomew's Hospital
West Smithfield
London EC1A 7BE
UK
Addendum: A note on follow-ups
The declared aim of the Moneyan treatment protocol is: "The result of all decisions should be a normal, well-adjusted child who will grow and develop into a mature adult, confident of his or her own identity and capable of achieving satisfactory sexuality and function." (Conte, Felix A. Melvin M. Grumbach: Pathogenesis, classification, diagnosis, and treatment of anomalies of sex. - In: De Groot, Leslie J. (ed.): Endocrinology, I-III. Philadelphia, PA: Saunders ²1989/III: 1810-1847 (=chapter 109)). To get a picture of the extent to which this is achievable, c.f. the following:
-
I Geiger/Sanchez (1982):
-
Summary
-
More than 20 girls with congenital AGS which were supervised by the pediatric departement during the last 10 years are now checked systematically for the present status of external genitalia. Most of them have passed one or more surgical correction, but none of them presented a cosmetically or functionally sufficient result. When the clitoris had been immersed beneath the cutis in the age of two to four years, it had grown until the late puberty to the extent of a thumb, causing discomfort especially during erection. In these cases, partial or even total clitoridectomy is unavoidable. [...]
No comment necessary
-
II Möbus/Sachweh/Knapstein/Kreienberg (1993):
-
In 24 patients with Mayer-Rokitansky-Küstner syndrome we carried out a post-operative follow-up examination. In the majority of cases, the operation had yielded functionally satisfactory results. 20 out of 24 of the patient collective now lead a healthy sexual life with an unimpaired emotional and sexual responsiveness. Early and regular postoperative cohabitation is vital for long-term success of surgical results and more important than regular of the wearing phantom. A successful operation greatly increases the patient's self-esteem, her feeling of being sexually attractive, and her self-confidence. Despite geral satisfaction with operational results, several women voiced criticism about inadequate perioperative psychological support. The patient's legitimate need for psychological help and guidance must not be neglected. This can take the form of regular discussions, in which detailed explanations about the disorder are given and which must also cover the subject of infertility, a cause of particular anguish in most women. This approach will contribute to enhancing the women's emotional stability and help them to better cope with their problems. It is our experience, that it is beneficial to include the patient's partner in such counselling.
Alas a few interesting facts are not mentioned in the summary... like they originally had 27 patients 3 of whom refused to take part in the follow-up (p.126) and those with an unfavorable outcome have had surgery at age 16-17, wheras the others had surgery at age 18-20 (p. 127). The note on post-op split-up of r'ships is on p. 128. 3 had serious problems w/body-image (p. 129). etc. etc.
-
III Lang/Neel/Bloemer (1973):
-
A new method of skin grafting of the artificial vagina in the operative treatment of vaginal aplasia is described. The mesh-graft technique of Tanner and Vandeput is used. The long-term results in 5 patients showed good healing and the long-term dilatations with protheses became unnecessary.
Same politics of summary-writing here... The note on none of their patients having done dilatation as they've been told is on p. 562.
The initial sections of the above FAQ essentially are based on Raven Kaldera's flyer for parents of IS kids.
Additional FAQS include:
next: Frequently Asked Questions from Non-Intersexed People
|
