MANAGEMENT OF VAGINAL AGENESIS IN POLAND IN LIGHT OF ACOG RECOMMENDATIONS
Karina M. Sasin, 2LTa, b
Karina Kapczuk, M.D. Ph.D.c*
Amy C. Lossie, Ph.D.d, e
a Office of The Surgeon General of The Armed Forces, Republic of Poland
b Faculty of Military Medicine, Medical University of Lodz, Republic of Poland
cDivision of Gynecology, Department of Perinatology and Gynecology, Karol Marcinkowski Medical University of Poznan, Republic of Poland
d Department of Animal Sciences, Purdue University, West Lafayette, IN, USA
e Department of Medicine, Indiana University School of Medicine, Indianapolis, IN , USA
INTRODUCTION: Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome is a congenital lack of the uterus and vagina in a phenotypic female with a 46,XX karyotype. Major reproductive consequences of MRKH are primary amenorrhea, impossibility to have vaginal intercourse and inability to bear children. It occurs in 1 out of 4000 – 5000 female live births and is the second most common cause of primary amenorrhea in patients with normal secondary sexual characteristics. Treatment options for vaginal agenesis include non-surgical and surgical techniques. The aim of the study was to compare management of MRKH syndrome in Polish patients with the recommendations of the American Congress of Obstetricians and Gynecologists (ACOG Committee Opinion No. 355).
METHODS: Subjects were recruited from members of the www.mrkh.pl forum and surveyed by internet using an online questionnaire consisting of 87 questions.
RESULTS: Forty women, aged 18–37yrs (median 26yrs) where the mean age at diagnosis was 17 years (range 12 to 22), answered the survey. Only 6 patients (15%) were diagnosed properly during the first visit. Twelve (30%) received full information about the syndrome, 20 (50%) received partial information and 8 (20%) received no information at the time of diagnosis. Twelve patients (30%) visited mental health-care professionals, 13 (33%) had no support from family or friends, and 17 women (43%) felt rejected. When diagnosed and treated, 33 patients (83%) felt like ‘guinea pigs.’ Thirty-three patients (83%) were treated for vaginal agenesis: 22 underwent vaginal reconstructive surgery (14 had Vecchietti’s vaginoplasty, 4 had the modified Wharton’s procedure, 2 had Krzeski’s vaginoplasty, 1 had bowel vaginoplasty, 1 had an unknown surgery), while 11 used dilators. The mean age at the treatment onset was 19.4 (range 12 to 25) for surgery and 19.9 (range 17 to 25) for dilation. All subjects were sexually active, and the level of sexual satisfaction (graded from 1 – the worst imaginable to 10 – full satisfaction) ranged from 2 to 10 (mean 7.4) in patients that underwent surgery and from 1 to 10 (mean 6.8) in the rest of the study group. None of the patients had started a family, but 36 (90%) planned to start a family in the future. Fourteen (35%) decided against surrogacy and 23 (58%) were willing to undergo a uterine transplantation if available.
CONCLUSIONS: Women with vaginal agenesis in Poland are treated differently than their counterparts in the USA. A significant number do not receive proper counseling at the time of diagnosis. Patients rarely receive professional psychological support. The predominance of surgical versus non-surgical neovagina creation is in contrast to the ACOG guidelines.