Experiences and Practical Advice

Learning about the diagnosis, and coming to terms with it

This is the story of an American young woman, Abby. She presented this at a recent support group meeting of AIS/DSD Support Group (USA).

Abby's orchid story

I'm a 17 year old girl who grew up into a really blessed and normal life. But around middle school I began to feel kind of different- my friends started getting boobs, starting their periods and stuff, but that never happened to me. I didn't think much of it until the summer after my freshmen year- I remember the day, June 3rd, my mom took me to her gynaecologist just to make sure everything was alright. I remember sitting in the waiting room feeling sick, tears in my eyes and a gut feeling that something was wrong. The doctor looked at my body, did some examinations, and told me I had not even started stage 1 of puberty. She drew blood, got an ultrasound, and talked about what could be going on. I came back the next day even more scared as I 2 MRI's and more tests. My parents and I walked upstairs to her office and after more tests; she sat us down and closed the door. I was shaking.

She began to explain that the MRI showed I didn't have a uterus. My head felt so heavy, I was breathing so deep, felt so hot and all of the sudden threw up all over her office, fainting multiple times! They carried me across the hall to a dark room, let me rest and then took even more blood while she finished talking to my parents. We were silent as we went down the elevator and into the parking lot. As we pulled out onto the street, I asked my mom, "Does this mean I can't have babies?" She brokenheartedly faced me with so much pain in her teary eyes and told me I could not.

My whole soul sank.

I numbly rode the rest of the way home, told my sister in one sentence, and went to lay in my mom's bed- crying at every diaper commercial on TV, watching the mothers' eyes fill with joy at the sight of their very own baby that looked just like them. My dreams for the future had been obliterated. As the girl who loved to babysit and longed for the days to be pregnant, to be a mommy- that night all I felt in my heart was sadness. I so pitied myself and my loss, wondering why this happened- why didn't I have a uterus?

I thought this was just by chance until my mom, who had been learning herself, told me on July 17th that I had AIS. She told me all these medical terms and that i was XY, had testes, and had to have surgery. It was a nightmare. The same feeling from the doctors came back... except this time worse. I hadn't just gone through a bad experience, I didn't even know who, or what, I was.

I felt disgusted. I was no longer myself but hated that I was so creepily different. I just wanted this all to stop. I emailed Katie [a young CASI woman] and it helped but still it was all I could think about. I just wanted to go back to not knowing why. I had my surgery the next week, scared to death, to remove my gonads that had formed a blastoma. I went into 10th grade with so much on my heart- the pain of this and not telling anyone was so heavy. I began taking hormones, and soon after found the facebook group. After talking to these girls who had so much confidence and stories, and on my one-year "orchidversy" I realized I had come to great terms with it. I came to Dallas [venue of national support group meeting] the next summer and I began to LOVE it.

At Dallas, I found out that what I thought was AIS was really Swyers Syndrome and it helped to sort out these questions. Having such amazing friendships made me so happy. I found acceptance and pride in having a DSD- a feeling I had never experienced so strongly before. I recently got to share my story with a few girls giving me courage that this wasn't something weird or to be ashamed of, but to be PROUD about.

Today with 100 + of you as my witnesses, I can boldly say that having a DSD is not some mutant disease, not always full of sorrow, not always a burden, but a BEAUTIFUL BLESSING, a privilege, a gift I would never ever choose to return because it has shaped who I am- a wonderfully and fearfully made, thankful and proud to be ORCHID SISTER FOREVER!

***

Another young adult writes:

Don't Ask, Don't Know

My best friend and I, in discussing the people we are becoming or maturing into or self-realizing, however you want to say it, began to talk about me having AIS and how it has affected my personal growth and my decision making.

Quick back story, in case you aren't familiar with me or my "journey":

Hernia at age 5 or so. Parents told I would never have kids. Called genetic fluke and my parents were told I had testicular feminization. Grew up knowing I was different/special (but not really knowing why) and that I couldn't have kids but nothing past that until college when a sociology class brought a flood of emotions, questions, and resentment to the surface. The four years following the sociology class I was introduced to XY chromosomes, AIS, and AISSGUSA... now present day...

I grew up wanting children more than anything. I allowed myself to be controlled by a cloud of negative emotions throughout a lot of my childhood because my life goal was strictly to be a mother of my OWN children. Adoption didn't seem fair to me and I didn't want to consider it. I didn't know anything of my condition other than what I was told: I was special. I was different. I would never have a period. I would never give birth to a child. Sex would be painful. I would probably never meet anyone like me.

The crazy thing is though is that I just accepted those answers, granted I was just a child but I have always been very inquisitive and never one to accept an answer of "just because". I realized that up until a fateful Fall day in 2005 when I watched a video in my intro to sociology class, that I was living by a motto quite similar to one the army goes by: "don't ask, don't tell" only mine version was "don't ask, don't know". I didn't want to know what made me different, I didn't want to be different. If I didn't know how I wasn't like everyone else, then I was just like everyone else; "nothing special to see here". I wanted to be normal, whatever that was. I had for most of my life allowed myself to be controlled by a condition that I knew nothing about. I wanted people to feel sorry for me, I wanted attention, and I wanted what I couldn't have (and possibly only because I couldn't have it). I realized that I held on to wanting to give birth to a child for so long only because I couldn't and that didn't seem fair, I wanted to be dealt the same hand of cards that every other woman was dealt. I also realized that I had grown up "knowing I was different" but not understanding why. I just trusted that I was different even though I didn't feel that way.

When I understood how I was "different", I didn't feel so. I was still who I was; a girly-girl who always lists laughing as one of her hobbies, who will talk or sing to anyone who will listen, who hates onions, who loves dogs and dancing, and who had at some point accepted the fact that she couldn't give birth to her own child. Only with the help of my friends and family who looked at me like I was a crazy person when I tried to convince them I was a freak show candidate and never saw me as anyone but me, with the love of theatre and the new ambition and drive it introduced to my life, and the AISSG and all of the AMAZING women that make it up, I was able to finally blow the cloud of doom and gloom that for most of my life had rested above my head away.

AIS early on made me self-pity but now it isn't something that defines me. AIS is something that I have actually come to love if you can believe it. It has empowered me in ways that I could have never imagined. It has provided new dreams and outlooks that I don't think I would have ever know without it. AIS has given me confidence with a healthy dose of humility, empowerment to always look deeper, self-educate, and accept all walks of life, and love. AIS has provided me with more love than this girl ever imagined. I have been shown unconditional love and acceptance by a conservative family that different is hard to accept, and unconditional love from my Savior who knew me before I was and could picture a life more marvellous than I could plan for myself (I was never given more than I could handle, but was always blessed ten times over what I should have), a deeper love in friends as I share my secret with them and it changes nothing to them except sometimes added admiration, a new sisterly love from being in a group of women that are cut from a similar cloth and are able to come together from all walks of life and just support and love one another, and of course self-love, because of AIS, I have found independence, self-acceptance, and confidence in ways that I never thought possible. I see myself growing into a strong young woman because of all the AIS experiences good and bad, and I just wanted to thank everyone who has helped that to happen. I love my life and though I will still face obstacles, I am not afraid. I have love, I am loved, I love.

So to conclude with what my best friend and I originally started talking about, AIS has affected my personal growth and decision making and in the most positive way possible. I am blessed.

I just wanted to share my positive experience/realization with you all.

Vaginal Dilation

Many thanks to Anna for sharing her dilation experience and the lessons she learned. You can read about it here. (new Winter 2014-2015)

Anna is also involved in The Dilation Project, a fun and informative animation/video on dilation. Go to dsdteens.org for further info.

***

Young people with a DSD like AIS worry about their bodies. And for those who do not have contact with other young women, growing up to young adulthood can be an isolating, worrying experience, which they really should not go through alone.

That is why we feel it is justified to post this open, honest account of a young woman's experience with vaginal dilation. We are very grateful for this contribution.

***

A young woman writes:

When I was 16 years old, my gynecologist and I began to talk about using vaginal dilators to increase the depth of my blind vagina and facilitate future sexual intercourse. I brought the topic up during one of my appointments, because I had noticed mention of the procedure on the AIS website, and wanted to learn more. She hooked me up with a set of white plastic dilators, ranging in size, and told me to apply pressure with them for 20 minutes per day, using Premarin cream as a lubricant. I tried them, and much to my dismay, I found the process to be anything but helpful. It was uncomfortable, both because I was inserting cold, hard plastic into my vagina and because my hands and wrists felt tired and sore very quickly. I also found the process to be emotionally difficult. Because I was diagnosed with AIS when I was little, I spent a good chunk of my childhood in and out of the endocrinologist's office, having my genitals examined with interest by men and women I didn't know. Using something as clinical as a prescription dilator did nothing but distance me even further from my genitals, making me feel like that part of my body was something I needed to stay away from in an effort to normalize them. Feeling frustrated and isolated, I googled something to the effect of "vaginal dilation" and found that mine was not an uncommon experience, and that most women with blind vaginas did not find the dilation process to be helpful.

When I discussed my misgivings later with my extremely helpful doctor, she told me that the dilators were not necessary in most cases. She told me that I could try exploring my body by masturbating, with the intent of manually expanding the tissue with my fingers. Aside from being a healthy expression of my sexuality, I found that this helped me to become more comfortable with my body and prepared me for more fulfilling sexual encounters. When I was ready to have intercourse, I experienced very little discomfort. After spending a long time with a very understanding boyfriend, I was able to enjoy normal sexual intercourse, with normal erotic sensation.

In sum, I guess my opinion on the dilation process is that it can be approached in two ways: the clinical, ranging from the use of plastic dilators to surgery; and the organic, an admittedly slower process. Having experienced both, the former did nothing but heighten my perception of my vagina as abnormal, and something to be fixed. The latter enabled me to develop a healthier relationship with my vagina and remove much of the anxiety and shame I felt, especially because I had someone who loved me working through the process with me.