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Personal Stories

[Last updated 12 May 2013]

We use this part of the web site to display people's stories. If you have AIS or a related condition, or you are the parents of an affected child, we would like to hear from you. The UK group looks after the web site so please send your story to the UK group (see How to Contact Us).

Many people with AIS and related conditions have found it very helpful to tell what happened to them. For many of us, it is very therapeutic to "say" those things that we have never told anyone, and quite cathartic to "get it off your chest" by tossing it out into the wider world, but in a safe way. If you wish, you can supply a pseudonym, although most people opt for us to use their real first name on the site. We understand the importance of safeguarding people's identity/privacy, so your full name, email address etc. will be completely confidential. Please remember not to mention other people's names without first obtaining their permission.

It is also a great help to other affected people/families to discover, by reading people's stories, that in fact a community of XY women exists, when they always thought they were "the only one".

Tell us how you learned about your, or your child's condition, what you felt and thought, and where you are with it now. What aspects do you think need further attention? Please give your email a title/subject line that give us some hint that it's a genuine message, because we sometimes don't open emails that arrive with a blank subject line or ones that look like spam.

A CAIS woman wrote in 1997:

I remember repeatedly thinking as a teenager “How am I going to get myself out of this?” What I meant was not how would I make it all go away (I knew that was an impossibility). Rather I thought “How am I going to summon up the courage to get the help I need, how am I going to find the strength to talk about it?” (even though I didn't yet know the truth and know what ‘it’ was), “and how the hell am I ever going to build a normal relationship?” I couldn't even imagine telling anyone I was unable to have children and didn't have pubic hair – the two things I actually knew and understood at that age.

The image of being painted into a corner was vivid in my mind since the age of 12 or 13. It haunted me until age 36. I never saw any way out of the corner except by taking my life, until I came across the letter [from another AIS woman, in a medical journal, giving the support group contact details]. The letter wasn't just a release from a corner, it was a release from the prison that was my mind, a place where everything was locked shut inside and could find no freedom of expression. And when I read the description, in ALIAS No. 1, of "....the process of hearing oneself actually saying out loud those words that you thought would forever remain as circling thoughts in your head", I convulsed with sobbing (the word convulsing is not an exaggeration; I had never cried from so deep a place, or as intensely as when I read that quote). Nothing I ever read so brilliantly depicted how I felt about my life experience and the ordeal of keeping it all locked inside my mind.

A member of the public emailed in June 2009 as follows:

I came across your website when doing some research and I just want to say how your life experiences have touched me and how I appreciate your candor and courage. I don’t have AIS and never heard of AIS until I stopped at your website, but I want you all to know that you are loved in this big universe and that if I could, I would personally hit every doctor with a 2x4 who hurt and subjected you to the terror of being examined by strangers and prescribed medication without choice or education as to why, and failed to educate your parents and the wider community.

I want you to let nothing and no one make you feel less about yourself. You are beautiful. Repeat it in the mirror every day. When I read your personal stories, I heard and saw the child inside you – I hurt for you and want you to know there is no excuse for how you have been treated. I beg your forgiveness on behalf of those who treated you like your innocent souls were invisible.


And I simply close by saying, what matters is not so much the events or circumstances of life, but our response to them. With God's help, and the help of people who stand up to make a difference (like all of you), that any situation can be used for good, even when others intend evil by hurting us. Thank you for providing me this insight into your lives. God bless you all and keep you safe from harm. I pray your lives will get better every day and that more will be done to cast light where darkness and ignorance has caused pain.

See also Telling the Illness Story for an article on the healing power of telling one's story.

So far, we have the following personal stories:


Parents' Stories

1997/98

Alberta is a South African woman who has a young daughter with AIS. She wonders what to tell her family and how they will react.

Feb 2001

Toni is a mother of two AIS daughters and has several other AIS relatives. It is an open topic within her family but it is still a painful one for her. She found it therapeutic to express her feelings by typing out her story.

By early Aug 2002 we only had the 2 parent stories above.... but we had 52 stories from adult affected women! (see lower down). So we contacted the parents on our UK list who had email addresses, asking if they could please help other parents by submitting their story (or asking them if we could use a story that we had already published in the UK group's newsletter, ALIAS) and saying we needed more interest/help in general from the parents of young children. As a result, we were able to include 6 additional parent stories, as follows:

Virginia had a letter published in ISNA's newsletter in 1995 when she was 46. The major part of her letter was reprinted with permission in ALIAS in late 1995. She is an adult with PAIS, but her letter is included here, under Parents' Stories, because she has good advice on helping a child deal with AIS.

Veronica, the mother of an 18 year-old with CAIS, told us this story of ‘buck-passing’ on the part of her daughter’s consultant and ignorance on the part of her GP with regard to information about AIS. It was published in ALIAS in early 1997.

Peter is the father of a CAIS daughter and in 1999 (when she was 12) he wrote this article about AIS for his university magazine. His daughter has been brought up in an atmosphere that has been completely open and truthful concerning her AIS.

Neil is the father of a CAIS 5-6 year-old. He offers some views/advice on the role of parents, the role of society as a whole and on surgery (particularly gonadectomy) in AIS. He wrote this account a few years ago but now submits it, together with an update (Aug 2002).

Deb emailed us in Jan 2000, when her daughter with Mixed Gonadal Dysgenesis was 6 months old, asking for advice about the clitoral recession that the doctors were recommending. She sent us an update in Nov 2000 outlining how she and her husband had decided against the surgery.

Willa emailed us in Oct 2000 seeking medical expertise for her 3½ year-old. She and her husband had reassigned their child from female to male when the diagnosis was discovered to be 5-alpha Reductase Deficiency rather than the PAIS diagnosis that had originally been given.

After appealing in ALIAS No. 21 (published Autumn 2002) for more interest from parents, we gradually started to receive more parents' stories for which we are very grateful.....

Oct 2002

Gayle is the mother of a 8 year-old girl with PAIS who had surgery at 3 months. She recounts the trauma and isolation of having to deal with the issue of ambiguous genitalia at the time of her daughter's birth. She tells of the benefits she and her husband gained from joining the US group and from reading ALIAS.

Aug 2003

Dave and Christine have a CAIS daughter in her late 20s. At her birth they were told she had AIS, hernias and testes, but were advised never to reveal this to her. Doctors made insensitive remarks during subsequent appointments. Their daughter found out the truth whilst at university and for some time could not forgive her parents for the "deceit" but is now doing fine.

Jan 2004

Teresa is the mother of a US high school student with AIS who first wrote to us when her daughter was 11. She writes again to present a positive slant on her family's journey with AIS.

Dorothy (Dot) is 74 and tells of her experience of having a daughter with Swyer's Syndrome (XY Gonadal Dysgenesis) in less liberal times. It has taken 46 years to get to the truth, during which time her daughter has even been through life-threatening illness related to her condition without having been told the full story.

Debbie was told on the basis of a sonogram (the gynaecologist wouldn't do an internal examination on a 17 year-old virgin) that her daughter had no womb and that they should not tell anyone about this. She wasn't given a diagnosis but a web search suggested MRKH. She is angry at the general attitude and lack of support on the part of the doctors.


Adults' Stories

1995

Sherri founded the USA's AIS Support Group in 1995 and has done much to help AIS women and parents. These three accounts by Sherri were published in ALIAS in late 1995, late 1997 and late 1998. (See also Sherri's article Key Issues for AIS Women in ALIAS No. 5.)

1996

Flora, who started the east coast Canadian AIS Support Group group in 1996 aged 43, tells her story. She has a younger AIS sister and two young AIS nieces. Her story also provides a link to the text of an article she wrote for an obs/gyn journal in 1998.

Sallie, a 55 year-old Canadian AIS woman who had just made contact with Sherri and Flora, wrote in early 1996 telling how she'd had to wade through the stigmatizing terminology in medical textbooks in order to get information. Her story was published in ALIAS in late 1997.

Celine is 34 and wrote to us with a story that shows the pain (and fortitude) that can develop in the face of the paternalism and lack of communication that characterise AIS management. It was published in ALIAS in late 1996.

1997/98

_________ [Name] emailed the UK group in early 1997 giving an account of her family (which had 5 AIS women of her generation) and which she said could be put on the website. [Removed 10/05/09].

Elizabeth (1) contacted us from Australia in March 1995, aged 50, having failed to find a support group in her country. She attended a UK group meeting in Sept 1996 then started the AIS Support Group in Australia. Her story was published in ALIAS in late 1997.

Dawn learned of her AIS a little over two years ago, at 36 years old. She talks about the difficulty getting her medical records, her feelings at having had the truth kept from her, the positive aspects of finally facing the truth and finding the support group which has become a large part of her life.

Caroline, like most of us, had difficulty at first with her diagnosis of AIS, but joining the support group and meeting other people with similar life stories has helped her to be more self-accepting.

Nicky has a family history of AIS and learned that she has AIS as a young woman. She tells of failed vaginal reconstruction surgery, and how in her 50s she has found happiness in a lesbian relationship.

Swati is an Indian woman who was diagnosed at age 15, but who recently discovered that she has Leydig Cell Hypoplasia rather than AIS.

Diane is a 65 year old counsellor with AIS who gave an excellent talk in April 1998 to an endocrine nurses conference in her native Canada. The story here is made up from the personal aspects of her presentation. She talks about the dangers of secrecy and the right of everyone with an AIS-like condition to know the truth and to have help in adjusting to it.

Late 1998

Rachel is a 15 year old who has been made very happy by meeting other AIS women.

Elsa describes her ongoing effort in coming to terms with AIS. Elsa, if you're reading this, we've lost one or more lines from the beginning of your story and can't find your original communication to us, so can't contact you. Could you supply the missing words? Does anyone recognise Elsa (bearing in mind name might be a pseudonym)? Could you put us in touch?

Rosemary talks of reading her medical records, of the dangers of doctors withholding the truth, and how she might have made different life decisions had she been told the truth 30 or so years ago.

Marie was not told about her condition, but discovered she had it in one of the worst ways - through a magazine article.

Crystal was only told the truth about her condition from a new doctor, but has since been supported by a loving partner and her faith.

Tammy is a 28 year old who after a lifetime of medical attention has only recently understood that she has 5-alpha Reductase Deficiency.

June 1999

Rosie [removed for updating] arrived at her family doctor's surgery with a portable photocopier and asked to look at and copy her medical records. As a therapeutic/cathartic exercise she's compared the doctors' perception of things (as gleaned from the various letters) with her own feelings at the time (mostly about her vaginal hypoplasia).

Shorona wrote this profile in order to join an AIS email discussion circle run by members of the US support group. She has now probed further into her medical history and believes she has 17-beta-hyroxysteroid dehydrogenase deficiency. To all intents and purposes this is very similar to the PAIS she thought she had.

Karen is a CAIS 35 year-old who didn't find out about her condition until relatively late in life after seeing AIS mentioned in a newspaper article. She has had difficulties coping with things but is not bitter towards doctors/parents. Coming to support group meetings has really helped her.

Sasha is a 17 year old who, with the support and openness of doctors, parents, and friends, has developed a healthy attitude without letting AIS rule her life.

Jen is 33 and has a positive attitude to her AIS. She gained support from an AIS aunt, feels that knowing infertility at 14 has enabled her to plan her life, and has stretched her vagina with dilators and oestrogen cream. She and her husband had a surrogate baby, using her sisters' eggs.

Hannah [story removed] has a lot of questions about AIS and its effects on her life - her relation to God, her sexual orientation, her relationships... [she has added an update at the end of her story, April 2004, describing how she now feels about things].

Jeanne was lied to, until a traumatic medical experience at age 12. Now, at age 41, she is slowly coming to terms with having AIS.

Ann is 25. Like most of us, she struggled to accept her sexual identity and the lack of disclosure; she is now dealing with the difficulties of adoption.

Jan discovered she has AIS from a buccal (mouth) smear in a biology class. She is now married to a supportive and understanding man.

Elizabeth (2) feels that the way her condition was handled (the vaginal aspects in particular) severely affected her ability to form intimate relationships, although she has been very successful in other areas of her life.

Jay, who is 37, knew she'd had a double hernia aged 4 but has only just found out about her AIS from a TV program. She was made to feel freakish by being surrounded by hoards of doctors during consultations and is amazed to know that there are others like herself.

Nina was brought up as a boy but didn't fit comfortably into this mould, psychologically or physically (didn't virilise properly at puberty) and, following oestrogen treatment, has now married a wonderful man but has had to fight shame, ignorance and prejudice all along the way.

Amy has suffered the usual feelings of freakishness, and fear of close relationships, as a result of being kept 'in the dark' about the nature of her condition and therefore isolated from other AIS women and from emotional support.

Aug 2000

Carolyn has hit many brick walls in trying to get doctors to put her in touch with other AIS women (after she'd found out, in a particularly unpleasant way, what it was they had hidden from her for so long). She also feels that a lot of her health problems might be due to androgen-lack.

April found our web site aged 47 and suddenly realised that her condition was a known entity, had a name etc. She was misled about her surgery at 24, and received no HRT until age 37. Her complaints about difficulty with intercourse fell on deaf ears. Since then, she has made good progress and developed rewarding relationships.

Maya (1) is 27 and has CAIS. She, like others who have contacted us, is relieved at last to have read stories so similar to her own. She relates her problems in having physical relationships.

Sue is in her early 50's and has CAIS. She always felt different from other girls, felt more male than female, and has had difficulties in relationships with men (short vagina). She feels that her gonadectomy "took something away" and she hasn't been happy with oestrogen HRT, which she has now stopped taking.

Anna has CAIS and is 39. She has always been one step ahead of her doctors in finding out about her condition and has suffered psychologically because of it all being hushed up. Her sister has just discovered she is pregnant with an AIS child.

Lauren and was brought up as male but never really developed male characteristics. He transitioned to the female role aged 18. We steered her to the UCL/Middlesex Hospital, London where, in her mid-20s, she was diagnosed as PAIS Grade 1 (other doctors having suggested she was transsexual).

Challace is 36, has CAIS, came from a prudish background, and has had to find out everything about AIS more or less on her own. She has had some dark periods in her life, but has now found happiness in her marriage and her faith.

Maggie is 38 and was told aged 11 or 12 that she was a 'male pseudohermaphrodite' and has never been able to have relationships in spite of a vaginoplasty operation aged 21. She has only recently started to come to terms with her situation, by being involved in a hospital follow-up study.

Nicky (2) is 26 and discovered 8 years ago in a college medical library that she has CAIS. She has built a wall around herself since then and is ecstatic at having found the web site. She has subscribed to the UK group and is educating her parents about AIS and hopes to bring them to the next group meeting.

Ariel is 23 and was diagnosed at 17, although clues were present at age 5. She hasn't told anyone outside her family about her AIS. She has concerns about telling potential male partners and finds the use of vaginal dilators somewhat daunting.

Kata is a 23 year-old with AIS from Finland. She feels that the way she was told about her condition by the doctors was inappropriate and that there was totally inadequate coverage of the implications regarding a sex life.

Chelsea is 15 and, like her older sister, has CAIS. Although she has had some times of depression, she has a positive outlook regarding her condition.

Aug 2001

Mary is 28 and has felt 'different 'since she was 12. She learnt in her early 20s that she had XY chromosomes by reading her GP notes after he had briefly left the room. When challenged, her GP was very insensitive about it. She is now getting some answers and is happy knowing there are others affected.

Terhi is a CAIS 22 year-old from Finland who has had a very difficult time with her AIS and other medical/psychological problems. She is starting to recover and is searching for insights into what it means to have AIS.

Bobby Jo is a CAIS 47 year-old from Canada, who has only recently discovered the full truth about her condition. Various doctors "strung her along", and although at various stages in her life she wanted to find out the reason for her medical condition she is not bitter and her marriage has helped her adapt to her situation.

Beverley is 28 and is angry that doctors told her parents to lie to her about her AIS and that she was not offered any psychological counselling. She's had trouble with HRT and feels that this might be a factor in some other health issues (pituitary and thryoid problems, and osteoporosis) she experiences.

Emma (1)  is 39 and has ovaries and a uterus; and she menstruates. She also has a larger than average clitoris that causes her some distress, although she has had relationships. She feels that doctors might be hiding something and has recently been told that her medical records were lost when she was about 11 years old.

Kathy and her sister are AIS success stories! Neither of them has a problem with their condition, and both are married and have adopted children. Kathy doesn't know what was "done right " in their case but wishes to reassure parents that it needn't be all doom and gloom.

Denise wrote a personal profile in response to a request from a well-known organisation. They wanted a case study that they could display on their genetics web site. She relates her experiences under the various headings that they suggested.

Barbara (1) is 52 and by reading our web site has concluded she must have CAIS. She provides an account that she wrote in her 40s and has added a postscript explaining how much better she feels about herself today.

Lucie is a CAIS 22 year-old who has never doubted her femininity and has attracted considerable male attention. She was bullied at school, having told a friend about her absent periods, and although it was a shock eventually to find out her diagnosis, she is now comfortable with it and has an understanding partner.

Grazyna is 17 and has CAIS. She wrote from Poland on the day she came out of hospital after a gonadectomy. She titled her emailed story, "My first step towards coming to terms with myself and the whole society". She has an AIS sister and aunt, and her other sister is a carrier. Writing down her feelings was an emotional and cathartic experience for her.

Carmel is 45 and has only just learned her diagnosis as a result of her younger sister being diagnosed. Although she has three wonderful adopted daughters the discovery has brought up feelings of "shock, disbelief, anger, unacceptance". She thinks back over all the years of lying and lack of support.

Louise is 26 and has Mayer Rokitansky Kuster Hauser (MRKH) syndrome (XX female with lack of uterus and vagina). She feels there was too much delay in detecting/treating her condition and she found her male doctors to be very unhelpful and rude, whereas the female ones were helpful and sympathetic.

Barbara (2) has PAIS and is in her mid-40s. She was traumatised by a surfeit of medical attention with a dearth of medical information, but is glad that her larger than average clitoris was not reduced. At 35 she sought out the truth and has found peace with herself through psychoanalysis and meeting others.

Maya (2) is a 31 year-old with AIS. Her teenage years were very difficult and she has had problems with telling boyfriends about her condition. She is now happily married and awaiting the arrival of a baby via a surrogacy arrangement.

Joy is 32 and probably has PAIS. Doctors told her at 15 that she was a 'male pseudohermaphrodite' but offered no emotional support. She has questions about vaginal surgery/adequacy, how to form relationships and what to tell a partner. After recent help from a psychologist she is very happy to know, via the web site, that she is not alone.

Dorothy is 54 and married, with an adopted son. She presents a well balanced story which illustrates the difficulties faced by many AIS women but which also shows a positive attitude.

Aug 2002

Amanda is 20 and was told she had testicular feminization at 16. She has found it difficult coping with this knowledge on her own (not helped by the way it was covered in a school biology class). She has pushed people away emotionally but has also 'slept around' to try and prove her femaleness.

Jasmine was brought up as a boy but didn't develop full male characteristics and was teased at school. She changed to the female role in her 20s, having become aware of transsexuality, but has only just, at the age of 30, got a proper diagnosis of PAIS. She is now doing a medical degree.

Elaine (1) is a CAIS 31 year-old who found out the truth when, aged 26, she asked a doctor if she should be having cervical smear tests. The doctor reacted to her horrified look by saying "Yes, you are one of those"(!). In spite of this Elaine has developed a positive attitude.

Angel is 29, is from Israel, and thinks she has PAIS. With typical panic about 'deficient maleness' yet no concern about 'deficient femaleness', doctors performed a clitorectomy and orchidectomy when she was 11 but only told her 2 years ago that she had no vagina. She has gained strength from having discovered our web site. [Later her doctors said she had 5-alpha-reductase deficiency rather than PAIS.]

Sonja is 35 and has PAIS. She believed her vagina was too short. In her 30s she read about pressure dilation on our web site but hospital doctors, confirming her short length, recommended surgery and would not prescribe dilators. She then found that her vagina is actually long enough and that all she needed was a lubricant.

Bibi is a PAIS 18 year-old who is a Muslim. Her faith gives her sollace regarding her condition but also fosters traditional values (marriage is for procreation only, adoption is not favoured etc.) that set up additional challenges. She is trying to pluck up courage to seek vaginal lengthening without telling her family.

Nadine, a CAIS 19 year-old, was ashamed of her late development, flat chest and sparse pubic hair; and shocked to learn the true nature of her problem (in spite of having AIS relatives). She had problems with vaginal dilators but solved the problem through sex with a patient and understanding partner. She says the "not being able to have sex thing" was the hardest aspect of AIS to deal with.

Iris, a CAIS 47 year-old tells of her relationship with doctors, mother and husband. She says, "[letter from a genetic counsellor] states that the only thing I have to concern myself with is my inability to bear children. What an absolutely stupid and simplistic view of AIS." Shame and secrecy have fueled feelings of inadequacy and low self-esteem, and she has become "a classic over-achiever", but seems to have developed a positive attitude.

Madge is 21 and probably has CAIS. It's not hush-hush within her family but it's not really talked about either. She says that "sex in general has always seemed like foreign territory" and "I know I will never have sex, let alone children the natural way". But she tries to see her condition as a blessing rather than a stigma.

Anon (1) is an anonymous CAIS woman's story. She had a bad time with HRT following gonadectomy (which she regrets having) and has explored natural alternatives. She and her partner adopted two children at birth whom she "breast-fed" using a milk delivery system. She encourages the parents of AIS children; and deplores the notion of aborting affected foetuses.

Melody, a CAIS 33 year-old, found out the truth partly from sight of a letter in an insurance medical report ("...the final sentence written by Dr. Liar-Liar-Pants-on-Fire [her gynaecologist]: 'Thank you for this most interesting and unusual patient.' ") and partly via the notorious AIS episode of 'ER' (see Debates/Discussions). She stopped HRT for about 10 years, on discovering the deception, and now has osteoporosis.

Cindy is 46 and has CAIS, but didn't learn this until age 35, when she was persuaded to undergo a gonadectomy that left her with no energy or sex drive ("like a light switch was switched off") just at a time when she was facing other major life events (death of loved ones). She believes that childhood sexual abuse and her AIS have "doubled the odds that I'd be gay".

Tracy is 29 and does not know her diagnosis. She was born with ambiguous genitalia, no vagina and a partly-formed bladder; and had urinary tract surgery at birth and feminising surgery aged 11. She grew up in a culture where such situations are taboo and no-one has ever explained her condition to her. She has always been shameful about her body and has had difficulty with sex.

Elaine (2) is 43, has CAIS, and has only just had a gonadectomy. Her diagnosis was "pushed under the carpet" when she was younger; it was never really understood or talked about in the family. An elder AIS sister's osteoporosis recently prompted her to seek medical advice on her own account. She has a supportive husband but regrets not being able to discuss things with her mother who died 2 years ago.

Jane is 41 and deduced she had CAIS at age 20 from an article about Joan of Arc (subsequently confirmed by her doctor). It has never been talked about in her family and she is angry that people who 'change sex' get counselling but "we're just told one day: 'Sorry, you should've been male, now get on and live with it.' "

Samantha is 36 and has XY gonadal dysgenesis (Swyer's syndrome) so she has a uterus (unlike those with AIS). She has tried IVF unsuccessfully and struggles emotionally with the infertility and genetic aspects. It is not discussed within her family and she has heard totally inappropriate remarks from a consultant, although her GP is supportive and understanding.

Aug 2003

Helen is a CAIS 32 year-old who was diagnosed at 17 but has never talked with her mother about AIS. She'd asked the hospital clinic if they knew of other affected women and they said no. So until she read about two UK group members in a magazine article in April 2003, she thought she was the only one affected.

Sophia is 40 and has 5-alpha reductase deficiency. She had childhood masculinising surgery which caused long-term medical problems. More recently, she chose to have feminizing surgery and has only just unearthed her diagnosis. She is angry about parents' and doctors' mismanagement, about secrecy and the overemphasis on 'gender' and 'sex', but has found support group meetings to be valuable.

Eden is 34/35 and has CAIS. She was told the usual half-truths and, like many of us, came across the awful term "male pseudo-hermaphrodite" when searching for clarification. She went through an unhappy promiscuous phase, due to a broken family life and a perceived need to prove her femininity, but is now married with a newly adopted baby.

Trudie complained that we hadn't published her "AIS success story" a couple of years ago, suggesting we only publish negative stories. We assured her that we didn't ever see her story and don't recognise her name so there must have been some mistake. We said we'd be very pleased to publish it now and that we are absolutely not selective in what we publish, but she wouldn't (re)submit her story.

Christine is in her mid-40s and thinks she has PAIS Grade 4. She is amazed that she has never had counselling to help with what is, at times, "a living death" and hopes that attention to the emotional/psychological aspects is now part of the treatment. She wants to make up for lost time and push for treatment to make a lasting relationship possible.

Erica, a 31 year-old in Belgium, learned that she has CAIS only 6 days ago (although diagnosed at 3 months). She is angry that her ignorance and feelings of abnormality stopped her having relationships (and even now her doctor wouldn't have mentioned her 3cm vagina if she hadn't asked). Her mother only learned it was a genetic condition 4 years ago when Erica's AIS niece was born.

Emma (2) is 27 and found our site via a women's magazine article. By using the site, she has filled in the missing information not provided by her doctors and has decided she must have Swyers Syndrome (XY gonadal dysgenesis). She is overjoyed to know that her condition has a name.

Jane (2), 30s, has chimeraism, an extremely rare condition, and identifies as both "boy and girl", having both male and female organs, and uses male and female names in different situations. S/he suffered the usual secrecy and the forced surgical "correction" (feminization) in childhood and still suffers the medical complications of the latter. S/he explains the issues involved in deciding what clothes to wear.

Emily is 14 and has CAIS. It was known to occur in her family so it was not too great a surprise when she was diagnosed, probably at age 11. She has only recently found out exactly what the conditions is, and has been open about things with her friends and she sees some distinct advantages to having CAIS.

Hannah [Removed] (whose story was initially posted under 'June 1999', see earlier) sent an update in April 2004.

Audrey is 61 and was discovered in 1947 to have testes and "a penis in the right hand side of my abdomen". She was never told much about her condition at all except that she "could have a normal married life", an exhortation she has found to have no basis since, after her marriage failed, she has found relationships with women to be more fulfilling.

Paisie is a 39 year-old PAIS woman from Denmark who recently found out the truth when she took part in a hospital study. Knowing the exact nature of her condition has helped her understand how her feelings are normal for her. She has discussed things with her PAIS sister for the first time in 35 years. She offers insights about overcoming vaginal hypoplasia, about accepting both one's male and female sides, and about testosterone HRT.

Dee is a 23 and at "hysterectomy", aged 9, was told there were only six known cases in the UK! It was only last year, on seeing the words 'testicular feminisation' on her GP's computer screen, that she had a name for her condition. A web search revealed the more appropriate 'AIS' terminology and that there are in fact lots of similar women. She is trying testosterone HRT. She sent a good appraisal of her first group meeting.

Aug 2004

Emma (3) is a CAIS 22 year-old who gained information from her Mum at age 10 and from coming across a doctor's letter. In her mid/late teens she became engaged to a man 8 years older and had a good experience of telling him the truth (finding that he was also infertile). She found our web site and Dr. Warne's CAIS book very useful. Her main problem, now that she is in a stable relationship, is people's obsession with "when she is going to produce babies?".

Jack is a 48 and has gonadal dysgenesis and PAIS. In a very intelligent and well-written account he describes the awful treatment (emotional and medical) he has endured over the years, but how he has managed to draw positives from the experience, with a successful college life, marriage and career. He offers valuable insights into making sure the same mistakes aren't made with today's intersex children.

Jill is a CAIS 35 year-old who still has her testes, having challenged a gonadectomy recommendation at age 21. She has an aunt in her 70s and had a second cousin (died last year aged 74) both with CAIS. Jill has regular checks done on her testes (ultrasound) and her hormones, so the testes could be removed if necessary. Her aunt has brittle bones but Jill has been told not to worry about her bones until she's 50!!

Anna Maria is 35 and today opened a letter, from a specialist to her GP, that at last gives her a name ('gonadal dysgenesis') for her condition. A web search then brought her to our site. At 19, following gonadectomy, she forced the gynaecologist to reveal that she was XY, against the wishes of her parents, but had not known the full story until now. She is amazed to find all the other stories similar to her own on our site.

Aug 2005

Lucie (whose story was initially posted under 'Aug 2001', see earlier) sent an update in Aug 2005 with some thoughts about breast development in relation to the timing of gonadectomy.

Amy (2) is a PAIS 23 year-old in the US who found out her diagnosis 2 years ago and who, whilst at university, has sought to exorcise the ghost of having been “the family secret” (and the only one who didn’t know about it!) by spear-heading a campaign to educate the general public about intersex conditions.

Katarina is a 28 year-old AIS woman from Croatia. She recounts the disappointments and hurdles in dealing with AIS, in particular that of discovering, when first trying to have sex, that her vagina was very short. After a discouraging prognosis from one gynaecologist (who talked only of surgery), another specialist recommended pressure dilation which has proved successful.

Marta is a 31 year-old member of our Spanish sister group (GRAPSIA) who tells her story in Spanish. Conocer las vivencias de otras afectadas nos permite darnos cuenta de que otras personas han pasado por lo mismo que nosotras. Marta nos cuenta su historia con sus luces y sus sombras esperando que sea de utilidad. Muchas gracias Marta por compartirla.

Helen (2), aged 26, tells of how she used the non-surgical do-it-yourself method of pressure dilation to extend her short vagina, after she'd discovered this deficiency by overhearing medical staff talking about her as she emerged from her gonadectomy anaesthetic at age 18. She talks of the freedom of being open about her condition and refusing to regard it as a secret.

John is a 36 year-old man who tells of his feelings as he found out about his girlfriend's AIS, of how he researched it, accepted it, tried to educate her about it and to encourage her to face up to it. Ultimately, it's a story of his unconditional love for her; and he wants other young women with AIS to know that this is possible.

Bev (2) is a 39 year-old with AIS who went through the usual examinations, operations etc. as a child but without a proper explanation. An eventual revalation by her mother of the basic facts resulted in a lot of anger and a promiscuous phase. She then married, but news of her sister's pregnancy (and of an earlier abortion) caused a breakdown. She now has adopted children.

Di is a 20 year-old in Slovenia who comes from a Muslim family where sex is not talked about. She has had a typical experience in having received minimal information, which she had usually already worked out for herself anyway. She knows her diagnosis as 'hermaphroditus maskulinus' (always a nice touch - thanks guys!).

Aug 2006

Sarah (2) now 37, was 25 before she discovered she'd been told lies about her condition and it triggered an "emotional meltdown". She has now come out as lesbian and about her AIS, having had several articles about her story published in UK newspapers/magazines. Her story here is based on a 2006 article. In a later (2009) article she tells how she had now established herself as a counsellor.

Yaa is a 32 year-old from Ghana in Africa with an unusual set of symptoms. We picked up her initial enquiry to the UK group while we were attending the 10th meeting of the US AISSG in Aug 2006 and were able immediately to put her in touch with a young AIS woman from Zambia (studying in the US) who was attending the US meeting (her first).

Jan (2) is 43 and emailed: "Just a small note to say thank you for such an informative site. I was made aware of my AIS at about 18 yrs old, I take each day at a time and your website is a great place to connect, and just dip in and out of facts and stories, to realise I am not alone. My family have been less than supportive and it has been a really hurtful struggle on my own."

Hayley is 20 and was told by a doctor at 19 that she has 'testicular feminisation' and to look up the details of the diagnosis on the web. Since then, she has had an orchidectomy and has confided in her university friends who have been enormously supportive. She has found this web site very useful and is positive about the future.

Jane (3) is 40 and discovered the truth about her AIS at 29, more than 3 years after marriage. She is prompted to relate her story after finding this site and talks intelligently and with great insight; about her medical treatment, her parents' attitudes/choices, and the fact that her husband doesn't know the full story. She understands doctors' and parents' dilemmas and offers great encouragement to younger women.

Jane (4) is 38, was diagnosed at 15 (with a bad experience of vaginal examination), had reconstructive surgery at 20, but was only told the full story once she'd had a positive sexual experience. She offers some advice to parents about telling other family members and friends about their child's condition. She is now very happy, having discovered the light at the end of the tunnel.

Riya is 23, has CAIS, and writes from India. Nothing much was said to her about her condition until last year, and even then it wasn't the full story. A medical check-up for a job revealed that she had no uterus, and she overheard medical staff using the term 'intersex' when she was being anaesthetised. But the shock has been eased by finding this site and knowing there are others affected.

Natalie is in Australia, she is aged around 23, and has determined that she has Swyer's Syndrome. She gradually put the pieces together, with the support of her family and information gleaned from a number of doctors' appointments, but she credits the web, Google etc., as being the chief tools in her quest. She has a very positive attitude to her condition.

Andrea is a 24 year-old who has an enlarged clitoris, "no breasts" and a deep voice, but who menstruates. In her early years, her parents dressed her in boys' clothes but have never really discussed her situation with her. She says: "This has been the darkest secret of my life for the last 20 years and I want to let it go now." We put her in touch with a specialist to get a diagnosis.

Tilly is nearly 34 and her lack of a vagina has been the most difficult aspect of her (unspecified) condition. She had a failed vaginoplasty at 17 (the vagina closed up) and at 24 had a different technique (a piece cut from the colon used for the vagina). But she still cannot have intercourse and wonders how all this has affected her sense of self. She has had problems with cystitis/urethral syndrome and wants to get her HRT properly monitored.

Aug 2007

Janet is 23 and has PAIS. She was given some information aged 10 then the final pieces at 14. She is bitter and angry, has low self-esteem and has found difficulty in personal relationships, compounded by a difficult family life and living conditions. She worries about the size of her clitoris and whether her vagina is adequate. She feels she has not had appropriate care and attention.

Sarah is a CAIS 35 year-old, encouraged to be secretive about her condition (even towards her father) and who found out about having 'gonads' from a CAIS aunt. She's had three lots of surgery, feels that vaginal surgery has been unsuccessful and that she is too freakish to have a 'normal' relationship or to discuss things with others. However an understanding endocrinologist has given her the courage to make contact.

Apple is 24 and has two sisters with AIS. At 16 she was told her ovaries had "gone wrong" and she wouldn't have kids. The medics took photos (and video) for publication. She found out the real situation a few years later when she decided to talk about it in a college speaking exercise and contacted her specialist for background details. She also had trouble when her AIS came to light upon joining the navy.

Aug 2008

Laura is 22 and writes from overseas. She has a female anatomy (possibly MRKH) but no vagina or womb. A vaginoplasty left her with a recto-vaginal fistula and she has had 7 further surgeries to try and fix this, including a colostomy. More surgery has been suggested to rebuild the vagina (destroyed by fistula repairs). She wasn't aware of the non-surgical pressure dilation method until she read about it on our site.

Silvia is 31 and lives in a Baltic country. She has Swyer's Syndrome (XY Gonadal Dysgenesis) and had an insensitive medical consultation aged 20 (gynaecologist said she had a penis). She resisted having a gonadectomy, until persuaded at age 25, then embarked on a promiscuous phase in order to seek reassurance. She's reluctant to involve parents and friends in her problems.

Jasmine (2) is a 27 year-old Filipina living in China and an "avid follower" of our site. A doctor examined her in her teens but her family couldn't afford the necessary ultrasound procedure so she does not have a diagnosis, but suspects AIS. She talks of her difficulties dealing with lack of menstruation, and of infertility with regard to long-term relationships. She has a younger sister who has MRKH.

Aug 2009

Sam is a 25 year-old with PAIS. She wrote: "I think I am mentioned briefly on your site [Vaginal Hypoplasia page] about going off to Brazil in 2007 for surgery... I have a lot to tell after a total of 9 operations, the majority of which went badly. I think people should know about what I went through."

Aug 2010

Sophie (2), who has low grade PAIS, contacted us in Dec 2009, aged 40, and plucked up enough courage to submit her story in March 2011. She was brought up as a boy but suffered taunts about her female appearance, and puberty was more feminising than virilising. At/after college she decided to live as a woman and offers perceptive insights into the personal, medical and legal aspects of her condition. [Story removed 12-05-2013]

Valerma is a 31 year-old in South East Asia who is diagnosed with "ovotestis" and "true hermaphrodite". She has struggled with patriarchal social/cultural family conventions, teasing and bullying, lack of opportunities for medical care, problems with official documents etc. But in spite of this, she has become qualified and is supported by her faith.

Liam is a 25 year-old who had hypospadias repair surgery and has only just realised, via the web four hours before sending us his story, that he probably has PAIS and that medical professionals have failed to inform him of the fact. He says that the psychological aspects are the most difficult to deal with, although he has questions about sexual relationships, fertility etc.

Hilary sent in her AIS story in late 2003, when she was 45, but then had cold feet about it being posted on the site. In June 2011 she requested that it be added. Her AIS was a taboo subject in her family because of an uncle with a similar 'unspoken' condition and, as is typical for many of her age, she found out most of her diagnostic/medical history via her own researches.

Paul wrote to us about an ex-girlfriend whom he thought might have had AIS. He has some very supportive and encouraging words for any XY-women out there who might be worried about telling a partner about their condition.

Aug 2011

Louise (2) has PAIS. She was given the usual 'cover story' aged 16 and discovered at age 18 that she could not have sex. She didn't find out the truth about her diagnosis until she was 28 and is angry that now, at age 30, neither her short vagina nor her larger than average clitoris have been sorted out. She finds pressure dilation painful and wants surgery.

Meghan is 23, has CAIS and lives in the USA. We reproduce here, with her permission, her comments on a draft version of a novel by a UK author that featured a woman with CAIS. It incorporates many elements of her own experience with AIS. It seems surprising that someone of her age should not have benefitted from recent moves to more supportive clinical treatment.

Aug 2012

Victoria is a 42 year-old who only found out 3 years ago that she is an XY woman with Swyer Syndrome, and is angry with the previous deception (diagnosed at 22) and the fact that the information was leaked to her whilst recently seeking treatment for a low bone density. It has caused her much anguish and she says that the information has added no value to her life whatsoever.

Lisa is a 27 year-old, who was diagnosed with Swyer Syndrome at age 16, having felt different for many years. She talks of her difficulties in understanding and dealing with the physical and emotional aspects her condition and her fears of not being able to have relationships, until meeting her husband at age 21.


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