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During fetal development in females, the Mullerian ducts mature into the Fallopian tubes, uterus, cervix, and upper third of the vagina, (the so-called "Mullerian organs"). The lower part of the vagina is derived from a primitive structure called the urogenital sinus, which comes from the perineum. In males, the Mullerian ducts regress under the influence of a hormone, Mullerian Inhibitory Factor or MIF, from the developing testes.
In AIS, although the testes fail to cause masculinization of the external genitalia, they do produce sufficient MIF to suppress development of Fallopian tubes, uterus, and upper vagina. The upper third of the vagina is invariably missing, but the lower two-thirds may be fully developed and sufficient for intercourse. The reason is not clear, but in some cases the vagina may be even shorter, perhaps only a few centimeters, or even just a 'dimple'. The incidence of significant vaginal hypoplasia among AIS patients does not seem to be known.
It was suggested to the suport group in the mid-1990s by one paediatrician that significant shortening of the vagina in AIS indicates some degree of partial sensitivity to androgens (PAIS) and that those with the complete form (CAIS) should not have a major problem. This is obviously not the case since we know that two sisters, each diagnosed as CAIS (and with no androgen-dependent pubic/axillary hair), can have vaginal lengths at opposite ends of the spectrum. We also know of women with grades 4 and 5 Partial AIS who were born with fairly well-developed partial vaginas and who were able to achieve sufficient vaginal length for intercourse without surgery.
It should be noted that because of the vagina's natural elasticity, and because it tends to expand with arousal, the unstretched length of the vagina is usually less than the length it achieves with penetration. A survey of textbooks and medical papers in the mid-1990s revealed average quoted lengths ranging from 9 to 11 cm for the longest (posterior) wall in normal XX women. Shah and Woolley give the normal length as greater than or equal to 6 cm, and state that in a group of 21 AIS patients 11 had a vagina of 5 cm or less in length.
In their review of AIS, paediatric specialists Charmian Quigley and Frank French (The Laboratories for Reproductive Biology, The University of North Carolina at Chapel Hill, North Carolina 27599-7500, USA) spell out that in AIS ".... it is clear that the vagina is often short (less than 5 cm)". One post-operative study (Mobus et al) of 24 patients who underwent vaginoplasty (several methods), producing vaginas varying from 3.5 to 12 cm in length, found that 6 cm was the cut-off point below which patients and their partners had problems in achieving intercourse.
Although not completely relevant to this topic, but of relevance to the rising trend towards regular XX women seeking cosmetic genital surgery, is the appearance of the female external genitalia. Anyone who thinks that all women look the same, or that there is some standard ideal appearance, would be advised to check out the art of Brighton-based sculptor Jamie McCartney and the well-known book Femalia by Joani Blank. Note that magazine articles and web sites that talk about "designer vaginas" when referring to surgery such as labioplasty (altering the appearance of the labia) are incorrect because the vagina is an internal structure. They should really talk about "designer vulvas", this being the correct name for the female external genitalia.
In pubertal girls with AIS, the issue of vaginal hypoplasia should not be ignored or deferred until a girl is considered old enough to begin her sex life. Some discover a short vagina through self-examination, and can live in fear and isolation with this secret for many years. Others have experienced the trauma of a failed attempt at intercourse. If a girl perceives that she is unable to have penetrative sex due to a short or absent vagina, her conclusion may be that she will be forever ineligible to be anyone's sex partner. This can lead to depression, and prevent normal social development.
Counselling, with the goal of preventing such occurrences by providing information, should be given near the age of puberty. The girl should be informed truthfully of her anatomical situation and concurrently told what treatment is available.
Before advice is given, an examination should be made to assess vaginal length. In the support group, we know of girls who were caused needless anguish by being mistakenly told that they would require surgery to have intercourse, when they actually required no treatment at all.
There are two basic approaches to treating vaginal hypoplasia. One is to use plastic surgery (vaginoplasty) techniques to construct a new vagina out of tissue from various donor sites. The other is to expand and enlarge the tissue already present at the vaginal entrance by applying pressure (pressure dilation) over an extended period of time.
The results of pressure dilation are superior to those of vaginoplasty. After dilation, the vagina is lined with mucosal tissue very similar to that of a normal vagina, which has tactile sensation, and which lubricates with sexual arousal. Plastic surgery techniques often introduce foreign tissue (e.g. external skin or pieces of bowel) into the area.
Dilation should always be the first intervention tried, with surgery resorted to only after dilation has been ruled out. Dilation is also required following most surgical methods of vaginoplasty, and this postoperative dilation can be more painful than dilation without operation. While performing dilation will not adversely affect the potential success of a subsequent surgical vaginoplasty, creation of a vagina by dilation is generally successful only if plastic surgical vaginoplasty has not been previously attempted.
As mentioned before, the extent of development of the vagina does not correlate precisely with extent of masculinization in PAIS. It is possible for a well-developed partial vagina to coexist with fused outer vaginal lips (creating the appearance of no vaginal entrance at all). In this kind of situation, surgical division of the fused labia may be needed to facilitate intercourse, but should be carried out with careful thought given to not interfering with the potential success of vaginal dilation. In some cases, vaginal dilation can be carried out by manually pushing back the web of tissue created by the fused labia.
In addition to the information provided in the following sections, vaginal hypoplasia and the treatment options available are also discussed in various issues of our newsletter, ALIAS (see 'ALIAS Refs' lower down this page).
All of these procedures are best deferred until after puberty so that dilation can be tried first, and because vaginoplasty in childhood usually has poor results.
This is the most common surgical technique used. A newly created (neovaginal) cavity lined with split-thickness skin graft held in place with mold (stent). The main problem is the strong tendency of the graft to contract, thus closing up the cavity, prevention of which requires conscientious use of dilators postoperatively.
The neovagina is lined with full-thickness skin grafts (which tend to contract less than split-thickness grafts), or with amniotic membrane (from a placenta) or non-biological materials, which become gradually replaced by vaginal epithelium (cells that form the vaginal lining) during a somewhat prolonged convalescence. In 2007 a young group member went to Curitiba in Brazil for the procedure involving amniotic membrane. See the 1997 paper by Bleggi-Torres et al from that clinical team (under General Refs at foot of page) which reports on the suitability of this material for forming epithelium (cellular lining) for the vagina.
This method uses peritoneum (the membrane lining of the abdominal cavity) to line a newly excavated vagina. Gynaecologists Sarah Creighton, Cathy Minto and Alfred Cutner (a specialist in laparascopic techniques) from UCLH, London (see Recommended Clinicians) visited a Prof. D'Argent in Lyon, France, in early 2000 and witnessed an operation with some similarities to this technique but involving use of the wall of the bladder(?). Sarah reported:
We did however go to Lyon last year.... We went to see Prof D'Argent do a laparoscopic Davydov. The procedure looked good.... We also saw a patient who had undergone the procedure the previous week and the vagina was a good size. However it is a more major procedure than the Vecchietti [see later] and our preference would be to do the Vecchietti if possible. D'Argent has published [data] a large series [of patients] but it is in French.
Prof. D'Argent's successor (as of April 2007) is a Dr. Mathvet. Reports on the method have been published by D'Argent (1996), Fedele (2010) and Allen (2010, in Toronto).
A vagina is formed from a transplanted length of patient's colon (gut), tied at one end and moved down to new position with blood supply intact (also known as colovaginoplasty). This is possibly the most invasive of the techniques used. Afterwards, there may be a problem with prolonged mucous discharge. Claimed advantages include less contracture than with the McIndoe procedure.
The outer edges of the labia minora (if they are large enough) are stitched together forming an outward, rather than an inward, extension to the vagina. The axis of this extension is angled slightly differently from that of the normal vagina (less so in more modern variants), but Muram et al report a case in which it was possible to reverse the operation after some time, once the procedure had enabled a deepening of the original short inner vagina via intercourse. The modification of Creatas et al (Fertil. & Steril. 2010) may be used.
To a girl with no experience of surgery, the effort required to create a vaginal cavity by dilation may seem daunting. She should be aware that the inconvenience and discomfort imposed are usually far less than that experienced after conventional surgical vaginoplasty. Some who had been leaning towards preferring surgical vaginoplasty change their minds after speaking with adult AIS women who had undergone surgery.
This procedure (sometimes known as the Frank pressure dilation method, after the doctor who first advocated it, in 1938) is carried out by the girl herself at home. Rounded rod-shaped appliances are placed at the vaginal introitus (entrance), and gentle pressure (enough to cause mild discomfort) is applied. This is typically done once or twice per day for 20 to 30 minutes. The time to completion of treatment can vary from less than one month to over a year. An adequate dosage of oral oestrogen, plus local application of vaginal oestrogen cream may be helpful.
Pressure dilation requires that the patient be motivated to persist in carrying out the procedure daily, and that she is able to overcome whatever inhibitions she may have about contact with her own genitalia. For some, this is a serious problem that can prevent progress. Communication with others who have achieved success can be helpful. Ingram called this a "prime component" of the technique, saying that "The patient-to-patient confidence and motivation thus engendered appeared to be of a substantially higher degree than that provided by the gynecologist alone."
The appliances originally used for vaginal dilation were ordinary glass or plastic test tubes (note that for safety reasons, we do not recommend using glass test tubes). In 1981 Ingram not only developed a set of Lucite appliances, but also introduced a specialized stool (the "bicycle seat") which allows dilation to be carried out while the patient is clothed and in a sitting position. The pressure is applied to the base of the appliance by the seat of the stool. This frees the patient to perform activities such as schoolwork concurrently with dilation.
In around 1997 Dr. D. Veronikis, in a further refinement, developed appliances that are also designed to be used in a seated position, but on an ordinary chair, thus removing the need for the cumbersome stool. They have a design that allows adjustment of their length in very small increments, which helps make the process less uncomfortable. There are two versions of the dilator kit, one for use after surgery, to maintain vaginal length, and one for use when starting from scratch to form a vagina by pressure dilation alone. They are available in the US from Marina Medical Systems and in the UK from Cory Brothers (see Links to Other Web Sites). Dr. Veronikis has spoken at meetings of the US AISSG and claims that use of his dilator kit can succesfully treat vaginal hypoplasia in just 4 weeks. He also performs the Vecchietti procedure (see below).
A popular type of modern user-friendly dilator are the "Amielle Vaginal Trainers", a set of lightweight hollow plastic cones in a set of four sizes, with a handle that fits each size and which helps with manoeverability. The multi-disciplinary clinic at UCLH, London (see Recommended Clinicians) have used these dilators, which can also be obtained from the manufacturer/distributor, Owen Mumford (see Links to Other Sites). The above clinic, named the The Middlesex Centre (after the old Middlesex Hospital, now demolished, that used to be part of the UCLH NHS Trust) also provides a useful leaflet about vaginal dilation, available via their web site (see Links to Other Sites). The Scottish Genital Anomalies Network (SGAN), yes, we've had a go at them about the weird name, has also produced a vaginal dilation leaflet.
At our Sept 2009 group meeting, Naomi Crouch (gynaecology registrar at the UCLH clinic) told us that they are currently using a dilator set called Femmax, made/distributed by MDTi (see Links to Other Sites), in preference to the Amielle dilators.
The various types of vaginal dilator are discussed, and illustrated, in the issues of our newsletter (ALIAS) that are listed under 'ALIAS Refs' towards the end of this page.
See 'General Refs' at foot of page for access to two magazine/newspaper articles - Born Without (1983) and I Grew My Own Vagina (2006) - featuring women who successfully used pressure dilation to form a vagina.
A number of AIS women in the support group have found vaginal oestrogen cream to be of great help in the use of dilators. It results in a 'plumping' up and cushioning of the vaginal tissues and makes the use of dilators (and intercourse) much more comfortable. Vaginal oestrogen is available in the form of creams (e.g. Ortho-Dienoestrol, Ovestin, and Premarin) or as pessaries (e.g. Ortho-Gynest and Tampovagan), or tablets (e.g. Vagifem), or a vaginal ring (e.g. Estring) which releases oestradiol locally over three months.
Systemic HRT (tablets, patches etc.) does not always produce an improvement in vaginal symptoms (dryness, and atrophy or shrinkage of tissue) and vaginal oestrogen may also be needed to improve the condition of the vaginal epithelium (lining). Some doctors will say that women don't need vaginal oestrogen if they are taking the correct systemic (whole-body) HRT. Many AIS women have found this not to be the case.
One CAIS woman know to the support group failed to achieve penetrative sex during the course of a long-term relationship and decided it was because her vagina was too narrow. All the (male) doctors to whom she turned for advice dismissed the problem (it had been recorded that her vagina was of a reasonable length). She also suffered from recurrent cystitis (urinary tract infection) which made her life a misery. It wasn't until she happened to see a female locum (stand-in) GP, after many years of anguish, that vaginal oestrogen cream was recommended. This cured all the problems, more or less overnight.
This is a technique that has been pioneered in continental Europe; and in the mid-1990s, when we first came across it, didn't seem to have caught on elsewhere, in spite (it seemed to us) of obvious advantages over plastic surgery methods.
Pressure is applied in the vaginal area by a dilation 'olive', a plastic bead through which traction sutures or threads are threaded (think of a small horse chestnut 'conker' on a string!). The traction sutures run up through the abdominal cavity to a traction device placed on the outside of the abdomen. The vagina is not constructed during the operation (under anaesthetic) to place the traction sutures, but is formed by the stretching forces applied once the patient has recovered from this. Over the course of 7-10 days, the vagina lengthens to about 8-12 cm by gradually increasing the tension on the traction sutures. Intercourse is said to be possible after 3-5 weeks. The Vecchietti procedure is useful when manual dilation is excessively uncomfortable, or when progress in dilation is poor. Its relative advantages over manual dilation are greater when the vagina is initially represented by only a very shallow dimple.
Dr. J. F. H. Gauwerky (in 1996 was at Zentrum fur Frauenheilkunde, Theodor Stern Kai 7, 60590, Frankfurt am Main, Germany) has made a video for clinicians describing the Vecchietti procedure.
Dr Evelyn Loeser, a gynaecologist, worked at the University of Tübingen, Germany, with Prof. Wallwiener in a team that has experience with vaginal dilation and the Vecchietti method. She now (2006) practises in Endingen and at the University of Freiburg Clinic.
Another female gynaecologist, Dr. G. Buck (Dept. of Obstetrics and Gynaecology, University of Ulm, Prittwitzstrasse 43, D-89075 Ulm, Germany) works in a team with experience of this method.
Dr. Jorg Keckstein (in 1996 was at Dept. of Obstetrics and Gynaecology, Provincial Hospital of Carinthia, Nikolaigasse 43, A-9500, Villach, Austria) has worked with Dr. Buck (above) and is willing to treat overseas patients.
Dr. Uwe Ulrich (in 1995 was at Division of Reproductive Endocrinology, Dept. of Obstetrics and Gynecology, University of Washington School of Medicine, 4225 Roosevelt Way NE, Seattle, WA 98105, USA) has also worked with Keckstein and Buck (above).
Dr. D. Veronikis, Chief of Gynecology, St. John's Mercy Medical Center, 615 South New Ballas Rd., St. Louis, MO 63141-8277, USA) carries out the Vecchietti procedure. Dr. Veronikis talked about this at the 3rd meeting of ASSG US in Sept. 1998 in Chicago. In his 1997 paper (see 'General Refs' below) Dr. Veronikis says:
....The Vecchietti operation has been a well-accepted method in [continental] Europe for constructing a neovagina. Guiseppe Vecchietti first described his technique in 1965 and subsequently reported a 14-year cumulative experience with 307 consecutive cases in 1979 and 1980. However, for the most part, the technique remains unfamiliar in the English-speaking world. ....
In the Conclusions it is stated that ....
With the Vecchietti method, a neovagina has not been constructed at the end of surgery. Rather, it is the postoperative traction on the olive [positioned in the interlabial space] that constructs the neovagina. Therefore, it is a true dilation-type neovagina .... similar to the Franks method. However, in contrast to the intermittent pressure technique of Frank [using dilators by hand] which requires considerable patient effort and time, the Vecchietti method applies constant round-the-clock traction that creates a functional vagina [of 10-12 cm length] in 7-9 days.
The founder of AISSG US was in touch with Dr. Veronikis (late 1997). She told us:
Dr. Veronikis told me that there is just no reason why any clinician should have carried out a Williams [vulvo-vaginoplasty] or McIndoe [skin-graft vaginoplasty] or any other procedure after the Vecchietti method was introduced in 1965. Veronikis uses a laparascopic approach which sounds much like the Keckstein approach. He said, however, that so long as someone has at least 2 cms there is no reason to have even this semi-surgical method because he has pioneered a set of dilators which will completely correct the problem in only a month. I said Oh really, and he said Yes, absolutely.....He said he really only recommends the surgery if there is truly only a dimple (because his experience is that dilation doesn't work in such situations). He said he thought women with AIS had one of the hardest situations to deal with that he could imagine.
Gynaecologists Sarah Creighton and Cathy Minto at UCLH London (see Recommended Clinicians) told us (Spring 1999) that they hoped to visit Villach, Austria, to observe the Vecchietti method. Sarah reported (Aug 2001):
"We are very keen to offer the Vecchietti. Unfotunately we are having difficulty in the UK at present. We are unable to order the equipment as it is not licensed by the company for use in the UK. All equipment used on patients here has to be approved by a government body. It takes ages to do this. In terms of doing the operation we already have the practical skills so it is just a question of getting the equipment licensed... I have several patients waiting who would like and (be suitable for) the Vecchietti. A urologist called Pat Malone in Southampton also has several patients waiting for this and we are also working with him to get approval".
By mid 2002 the equipment had arrived and the first procedure had been scheduled for Sept 2002. See also Fedele 2008, Am. J. Obs. & Gyn.
Of course there is also the option of not undergoing any physical treatment for vaginal hypoplasia but instead being offered psychological counselling tailored to exploring the various aspects of sexual expression, and maybe adopting the attitude that human intimacy is not necessarily all about penetrative sex.
A middle-aged CAIS woman wrote:
"If I hadn't been so fixated on penetrative sex as being the only option, and hadn't been too intimidated, shamed and stigmatized by the way my AIS had been mis-managed to push for treatment then I might have had a better chance at achieving some sort of human intimacy, given my particular circumstances [virtually no vagina]. It makes me quite angry that no one encouraged me to think that way when I was younger. [...] I wish that I'd had a chance earlier in my life to discuss this possible mindset with a psycho-sexual counsellor, since our high-tech medical system hadn't seemed able to provide me with a vagina at the time when one might have been of use to me in developing some view of myself as a sexual person, in the sense generally recognized by this society."
While medical treatment for enhancing the possibility of 'penis-in-vagina' sex should be explored if a woman with AIS (maybe in agreement with her partners and family) feels this ought to be an integral part of her life, girls and women with AIS can be allowed to explore the possibility of other forms of sexual satisfaction, which in many relationships, particularly same-sex relationships, form the core of physical intimacy. By accepting a paradigm shift from "morphology" to "sensation", a richer form of relation between an AIS woman and her sexual body can be achieved. Human sexuality is expressed through a variety of ways, and society offers many examples of people with different orientations and leanings who don't require a (normal length) vagina for fulfilling their erotic potential.
In terms of a child with AIS, it therefore makes sense for a parent to wait on surgical treatment for vaginal hypoplasia until the girl herself can explore the matter, ideally by talking to a psycho-sexual therapist, and take an active and positive role in dealing with her natural inclinations and physical characteristics. What seems to be, in our experience, more important than early 'correction' of vaginal hypoplasia is having an opportunity to talk about the issues involved, both psychological as well as physical, when the girl reaches an age where she can understand about her condition.
Historically, paediatricians writing about AIS have often neglected to give attention to vaginal hypoplasia. One paediatric AIS expert told us in the early 1990s that he didn't consider that vaginal hypoplasia was really an issue in AIS. When the need for treatment has been mentioned in the medical literature, surgical vaginoplasty by the McIndoe procedure has been most often mentioned, usually with a recommendation to defer this until the time of anticipated intercourse. This was intended to obviate the need for postoperative dilation, but was likely to put a strain on the formation and maintenance of relationships. More recently, vaginoplasty by the even more invasive intestinal transposition has been promoted as a superior alternative, as the graft would have less of a tendency to shrink.
Pressure dilation has received less attention than justified by the good results possible and by the minimal expense, risk, and discomfort this technique involves. Even when mentioned in the literature, it has tended to be dismissed in favor of surgical alternatives. The overall trend, however, is increasingly in favour of less invasive procedures.
Lack of vaginal development is also a feature of some non-intersex, XX female conditions such as MRKH (Mayer Rokitansky Kuster Hauser syndrome). See Related Conditions from where you can access Patricia DeFrain's list of publications which includes a number of articles on methods of treating vaginal hypoplasia.
"Vaginal Agenesis/Hypoplasia" and "Vaginoplasty/Pressure Dilatation"
in ALIAS No. 2
"Vaginal Dilators" in ALIAS No. 3 (illustrates/compares various standard perspex dilators)
"Vaginal Aplasia Treatments" in ALIAS No. 4
"Vaginal Dilators Re-visited" (illustrates narrow dilators, 11 lengths, commissioned by founder of AISSG US from Univ. San Diego, California) and "Vecchietti Video" and "Inside Out" in ALIAS No. 5
"External Emphasis", "Vecchietti Re-visited" and "Stretch Yourself" in ALIAS No.6
"Plumbing Problem Perception", "Inferior Interiority" and "Vorsprung durch Technic?" in ALIAS No. 7
"Vaginal Hypoplasia" (about the Vecchietti method) and "User-Friendly Dilators" in ALIAS No. 11 (describes/illustrates the 'Amielle' dilators)
"A Move in the Right Direction" in ALIAS No. 12 (describes/illustrates the 'Veronikis' dilators)
"3rd US Meeting" (describes/illustrates the Vecchietti method and more about the [2 types of] 'Veronikis' dilator) and "Vaginal Hypoplasia Discussion" in ALIAS No. 13
"Vaginoplasty vs Dilation", "A Vote for Vecchietti" and "The Ups and Downs of Dilators" in ALIAS No. 14
"MRKH/Vaginal Atresia" in ALIAS No. 19
"Vecchietti Method" in ALIAS No. 20
"Dilation/Vecchietti "in ALIAS No. 21
See Medical Literature Sites on our 'Links to Other Sites' page for ways of accessing journal articles.
Frank R.T: The formation of an artificial vagina without operation. Am. J. Obstet. Gynec. 35, (1938), pp. 1053-1055.
Hecker B.R. and McGuire I.S: Psychosocial function in women treated for vaginal agenesis. American Journal of Obstetrics and Gynecology, 129(5), 543-547 (1977).
Vecchietti et al: Le Neo-vagin dans le syndrome de Rokitansky-Kuster-Hauser. Rev. Med. Suisse Romande (1979): 99: p593-601 (In French).
Ingram M.J: The bicycle seat stool in the treatment of vaginal agenesis and stenosis: A preliminary report. Am. J. Obstet. Gynec. Vol. 140 No. 8, (1981) pp. 867-873.
Born Without by Margaret Horsfield. Published in She magazine, approx. 1983. Describes the progress of a young girl in using the pressure dilation method to form a vagina, under the guidance of the (then) Chelsea Hospital for Women.
Poland M.L. and Evans T.N: Psychologic aspects of vaginal agenesis. Journal of Reproductive Medicine, 30(4), 340-344 (1985).
'The Missing Vagina' by Noreen Nash Siegel - An article from USA edition of Cosmopolitan magazine (1990), giving the early history of awareness of congenital absence of the vagina and its treatment together with an account of the experience of two women. Copy available from AIS Support Group.
Johnson N. and Lilford R.J.: The Surgical Treatment of Gynaecological Malformations. Chapter 25, 413-431, in Progress in Obstetrics and Gynaecology, Volume 8. Ed. J. Studd. Publishers: Churchill Livingston, Edinburgh 1990.
Langer M., Grunberger W. and Ringler M: Vaginal agenesis and congenital adrenal hyperplasia: psychosocial sequelae of diagnosis and neovagina formation. Acta Obstetrica Gynecologica Scandinavica, 69, 343-349 (1990).
Shah R., Woolley M.M., Costin G: Testicular feminization: the androgen insensitivity syndrome. J. Paediatric Surgery, Vol 27, No 6 (June) 1992, pp 757-760.
Gauwerky et al: An endoscopically assisted technique for construction of a neovagina. Arch. Gynecol. Obstet. (1992): 252: p59-63 (In English).
Care and Counseling of the Patient with Vaginal Agenesis (or at http://www.isna.org/articles/foley-morley.html) by Sallie Foley and George Morley. Originally published in The Female Patient, 17 (October):73-80, 1992.
Mobus V., Sachweh K., Knapstein P.G., Kreienberg R: Women after surgically corrected vaginal aplasia: a follow up of psychosexual rehabilitation. (German with English abstract). Geburtshilfe Frauenheilkd (Germany) Feb 1993, 53 (2), pp125-31.
Muram D. et al: The Ancilary use of Williams Vulvovaginoplasty for Graduated Vaginal Dilation in Selected Patients with Rokitansky Syndrome. Adolesc. Pediat. Gyn. 1993, 6: 157-159.
Suzin J. et al: Formation of an artificial vagina using Vecchiettis method (in Polish). Ginekologia Polska, 64(9): 443-51, Sep 1993.
Quigley CA, French FS: Androgen insensitivity syndromes. Current Therapy in Endocrinology and Metabolism, 5th edition. Editor W Bardin. Mosby-Year Book Inc., 1994, pp. 342-354.
Fedele et al: Laparoscopic creation of a neovagina in Mayer-Rokitansky-Kuster-Hauser syndrome by modification of Vecchietti's operation. Am. J. Obstet. Gynecol. (1994): Vol. 171, No. 1. p268-269 (In English).
Ghirardini G and Popp L.W: New approach to the Mayer von Rokitansky-Kuster-Hauser syndrome. Adolesc. Pediatr. Gynecol. 7(1): 41-43; 1994.
Keckstein et al: Laparoscopic creation of a neovagina: modified Vecchietti method. End. Surg. (1995) 3:93-95.
Cooper M.J. et al: Laparoscopic assisted Vecchietti procedure for the creation of a neovagina. J. Obs. and Gynaecol. Research, 22(4): 385-8, Aug 1996.
Bloechle M. et al: Vaginal reconstruction in vaginal aplasia by a Vecchietti modified laparoscopic operation further simplification of the method. Zentralblatt fur Gynakologie, 118(5): 303-6, 1996.
Wachter I: Vagina reconstruction by Vecchietti. Gerburtshilfe Frauenheilkd. 56(12): M181-M184; 1996.
Busacca M. et al: Laparoscopic-ultrasonographic combined technique for the creation of a neovagina in Meyer-Rokitansky-Kuster-Hauser syndrome. Fertil. Steril. 1996; 66: 1039-41. Also:
David Thomas: Is Early Vaginal Reconstruction Wrong for Some Intersex Girls? ("As intersex surgery enters social debate, paediatric urologists rethink some medical aspects"). Urology Times, February 1997.
Alvarez-Nava F., Gonzales S., Soto M., Martinez C., and Prieto M: Complete androgen insensitivity syndrome: clinical and anatomopathological findings in 23 patients. Genet Counselling, Vol 8, 1997, p 7-12.
Borruto F. and Fistarol M: Does it make sense to carry out a Vecchietti intervention pelviscopically? Gynakol Geburtshilfe Rundsch. 37(1): 44-7; 1997.
Bleggi-Torres L.F. , Werner B. and Piazza M.J: Ultrastructural study of the neovagina following the utilization of human amniotic membrane for treatment of congenital absence of the vagina. Braz J Med Biol Res, July 1997, Volume 30(7) 861-864.
Veronikis D. K: The Vecchietti operation for constructing a neovagina: indications, instrumentation and techniques. Obstet. and Gynecol., 90(2): 301-4, Aug 1997.
Groveman S: Medical, Psychological and Legal Issues in the Clinical Management of the Complete Androgen Insensitivity Syndrome Patient into Adulthood. A paper drafted in 1997 by Sherri Groveman who founded our sister group, AISSG US. It covers counselling, the clinical examination, truth disclosure, peer group support, vaginal construction, and gonadectomy and informed consent.
Fidele L. and Bianchi S: Laparoscopic creation of a neovagina in patients with Rokitanski syndrome: analysis of 52 cases. Fertility and Sterility, 2000, Vol. 74, No. 2, pp. 384-389.
Smith S: Experiences of sexuality reported by women with intersex conditions who have undergone some form of genital modification: A tale of two sexes? D. Clin. Psychol. thesis (2000), Department of Psychology, University of East London, Romford Rd., Stratford, London E15 4LZ. Sue Smith gave informal feedback to AISSG about this (mainly vaginal) surgery study (see 13th UK Group Meeting in ALIAS No. 19). The study formed the basis of a paper by Boyle et al in 2005 (see lower down).
Moen M.H: Creation of a vagina by repeated coital dilatation in four teenagers with vaginal agenesis. Acta Obstet. Gynecol. Scand. 79(2):149-150 (2000).
Wisniewski A.B., Migeon C.J., Meyer-Bahlburg H.F.L., Gearhart J.P., Berkovitz G.D., Brown T.R., Money J: Complete Androgen Insensitivity Syndrome: Long-Term Medical, Surgical, and Psychosexual Outcome (or here). J. Clin. Endoc. & Metab., Vol. 85, No. 8, 2000.
An Additional Monologue. Article by the MRKH woman about her experience with vaginal agenesis (title is a reference to "The Vagina Monologues", a stage play/event by Eve Ensler). Published in hardcopy form as Missing Vagina Monologue, by Esther (Marguerite) Morris, Sojourner (The Women's Forum), Vol 26, No. 7, March 2001. The article can also be accessed via the MRKH Organisation site.
Sarah Creighton MD, MRCOG: Surgery for Intersex. J. Royal Soc. Med., Vol. 94, May 2001. http://www.jrsm.org/cgi/reprint/94/5/218
Statement of British Association of Paediatric Surgeons Working Party on the Surgical Management of Children Born with Ambiguous Genitalia, July 2001.
Sarah Creighton and Catherine Minto: Managing Intersex: Most vaginal surgery in childhood should be deferred. (Editorial) British Medical Journal, 323: 1264-1295 (1 Dec 2001). http://www.bmj.com/cgi/content/full/323/7324/1264
C. Minto & S. Creighton: Vaginoplasty. Accepted (Aug 2002) for publication in The Obstetrician and Gynaecologist (RCOG journal).
Hart R., Minto C., and Creighton S: Vaginal Adhesions Caused by Stevens-Johnson Syndrome. J. Paed. and Adolesc. Gynaecol. 15 (3): 151-152, 2002. (A case report on loss of the vagina through a rare condition.)
Holt R.E. and Slade P. Living without a vagina and womb: an interpretative phenomenological analysis of the experience of vaginal agenesis. Journal of Reproductive and Infant Psychology, 20, 185-185, (2002).
Holt R.E. and Slade P: Living with an incomplete vagina and womb: an interpretative phenomenological analysis of the experience of vaginal agenesis. Psychology, Health and Medicine, 8 (1), p19-33, (2003).
C. Minto and S. Creighton: Vaginoplasty. To be published, Summer 2003, in The Obstetrician and Gynaecologist, 5: 25-9 (2003). This is an educational journal for Roy. Coll. Obs. and Gyn. members.
Minto C., Liao L.M., Conway G. and Creighton S: Sexual Function in Women with Complete Androgen Insensitivity Syndrome (or here). Fertility and Sterility, Vol. 80, No. 1, July 2003, pp 157 - 164.
Alderson J. and Glanville J: A Non-Surgical Approach to the Treatment of Vaginal Agenesis, in Balen A. et al (Eds.): Paediatric and Adolescent Gynaecology: A Multi-disciplinary Approach (pp. 205-228). Cambridge University Press (2004). See http://www.cup.org/titles/catalogue.asp?isbn=0521809614.
Davies M.C., Creighton S.M., Woodhouse C.R.J: The pitfalls of vaginal construction. BJUI 2005, 95 (9):1293-1298.
Boyle M., Smith S., Liao L.M: Adult genital surgery for intersex women: a solution to what problem? Journal of Health Psychology 10, 573-584, (2005). Paper based on the research that Sue Smith did for her D. Clin. Psychol thesis (see earlier in this list). It's mainly concerned with vaginal surgery.
Braun V. and Wilkinson S: Vagina Equals Woman? On Genitals and Gendered Identity. Women’s Studies International Forum, 28, 509–522 (2005).
L-M. Liao, J. Doyle, N. S. Crouch & S. M. Creighton: Dilation as treatment for vaginal agenesis and hypoplasia: A pilot exploration of benefits and barriers as perceived by patients. Journal of Obstetrics and Gynaecology, February 2006; 26(2): 144 – 148.
Liao L.M: Psychology and Clinical Management of Vaginal Hypoplasia. In Ethics and Intersex, Sharon E. Sytsma (Ed.), Springer, 2006. See here for the book's contents list. Access (fee payable) via http://www.springerlink.com/content/q303r8/.
Creighton S: Adult Outcomes of Feminizing Surgery. In Ethics and Intersex, Sharon E. Sytsma (Ed.), Springer, 2006. See here for the book's contents list. Access (fee payable) via http://www.springerlink.com/content/q303r8/.
Ismail I., Cutner A.S., Creighton S.M: Laparoscopic vaginoplasty: alternative techniques in vaginal reconstruction. B. J. Obstet. Gynaecol., 2006 113(3):340-3.
I Grew My Own Vagina by Helen Scully in The Guardian newspaper (11 March 2006). An AIS woman's account of her struggle with the psychosocial aspects of her condition and of her successful use of pressure dilation to create a vagina.
Butler C., Liao L.M: Vagina dialogues. British Psychological Society Lesbian & Gay Psychology Review 7(3), 281-297, 2006.
Katy No Pocket. A children's book, first published decades before AIS was understood, which many parents find helpful when discussing the impact of AIS with their affected daughters.
Ismail-Pratt I.S., Bikoo M, Liao L-M., Conway G.S., Creighton S.M: Normalisation of vaginal length by dilator treatment alone in Complete Androgen Insensitivity Syndrome and Rokitansky Syndrome. Human Reproduction, April 2007; 22(7): 2020 – 2024.
Ismail-Pratt I.S., Bikoo M., Liao L.M., Conway G.S., Creighton S.M: A prospective outcome study of vaginal dilation therapy as first line treatment for vaginal agenesis. Human Reproduction. In press 2007 (same paper as above?).
Thomas J.C. and Brock J.W. 3rd. Vaginal substitution: attempts to create the ideal replacement. Journal of Urology 178:1855-9 (2007). Another review of the available options and discussion of outcomes. Conclusion is that ideal replacement option doesn’t exist and patients need long term outcome data to make informed decisions.
Androgen Insensitivity Does Not Mean Immediate Surgery. PDF of web-based report (2 Nov 2007) on paper given by Dr. T. Purves at an American Academy of Pediatrics meeting. See original at http://www.medpagetoday.com/MeetingCoverage/AAPMeeting/tb/7209 for latest letters/comments.
Deans R., Berra M. and Creighton S: Management of Vaginal Hypoplasia in Disorders of Sexual Development: Surgical and Non-Surgical Options. Sexual Development, published online 24 July 2010.
Nakhal R.S. and Creighton S.M: Management of Vaginal Agenesis. N. American Soc. for Ped. and Adol. Gyn., doi:10.1016/j.jpag.2011.06.003 (2012).