Dr Tiger was quoted in TIME magazine in a story about the new awareness about Intersex because of the German laws allowing for non gender specific birth certificates.
The following is reprinted from the BBC News:
A child that is born neither male or female is a rare occurrence but babies born with some form of Disorder of Sex Development (DSD) happens in one in every 1,500 births, according to the support group Accord Alliance.
For some born with a DSD it can mean growing up in a world of shame and secrecy, but many people are working to foster openness about it.
After Janet was born, it was difficult to tell if she was a boy or a girl. “When my grandfather learned there was a question of my sex, it was suggested by him that they just let me die,” she says.
Now in her 50s and a mother of two, she was born with a womb, ovaries and female genes but her genitals and hormones were partly masculine. She was diagnosed with congenital adrenal hyperplasia, a DSD where her body makes too much testosterone.
Male and female genitals grow from the same tissue, but testosterone makes them look and develop differently. So an enlarged clitoris can be something between male and female.
Living with this condition, says Janet, left her a “psychological mess” for many years.
A wide range of factors determine a baby’s sex. Disruption in the development of any of these can cause a disorder of sex development. They can range from girls with more masculine characteristics and vice versa, to babies born with indeterminate sex, previously known as intersex.
Clinical psychologist and sex therapist Dr Tiger Devore was born with indeterminate sex. He has severe hypospadias, an abnormality of the penis, which in its milder form can affect one in 250 men.
“(Intersex) people are usually raised with shame and secrecy,” he says.
“Those babies are hidden from general society – and that was my experience of growing up.”
“I always had to keep it a big secret. I could not tell anybody I was having surgery down there, which we’re not supposed to talk about.”
Aileen Schast, a clinical psychologist who counsels families at the Children’s Hospital of Philadelphia, says: “It can be very confusing and isolating for families and what worries me the most is an early feeling of shame starts to develop, as this has to do with genitalia, and we don’t talk about that.
“Everyone is dying to find out what the baby is and how do you say we don’t really know yet.
“I had one parent tell me she almost wished her child had cancer because at least people have heard of it, so when she needed support she could say this is what my child has and people would know what it meant.”
Choosing a sex
Since Janet and Dr Devore were born there is much more understanding about Disorders of Sex Development.
Today the whole family of children born with a DSD are involved from the beginning, and urology, endocrinology, genetics, social work and psychology experts also work together.
For a child born of indeterminate sex they will undergo number of tests including those involving chromosomes, hormones and internal organs. To further complicate things the test results are not just either male or female, they can be on a sliding scale between the two.
Ultimately the sex chosen for an intersex baby is the one doctors and their family believe they will grow up to identify with best.
Dr Devore and Janet were both born at a time when parents went along with what the doctors said and surgery was seen as the first thing to do.
They have both had multiple operations. Dr Devore has had 20 surgeries, the first at three months old.
“In my view all the surgeries I suffered up to age 19 were unnecessary failures,” he says.
“I lost a tremendous amount of feeling tissue that I would like to have.”
Some people now believe that surgery should be left until the child can make the decision themselves.
“There are a lot of activists that describe infant surgery in one word – mutilation,” explains Dr Devore.
“Unless there’s a medical necessity to change the appearance of those genitals I don’t think they should be cut on at all,” he asserts.
“It’s the kid’s genitals, not the parents or the doctors and when they’re young adults they are going to want them to work.”
But Tom Kolon, MD Urologist at the Children’s Hospital of Philadelphia points out there can be a problem with leaving it until the child has grown up.
“I think we would all want the child to be able to make the decisions themselves. The problem there is if you wait until they are old enough and mature enough to understand and say yes – have you hurt them by not doing the surgery or the medication earlier?”
Female outside, male inside
Some DSDs are not obvious at birth because they affect the internal organs and can go undiagnosed for years.
Katie has androgen insensitivity syndrome, which was only discovered when she had a hernia operation when she was six.
“I look female on the outside, I have a normal female body but instead of having XX chromosomes like a typical female I have XY chromosomes like a typical male.”
During her hernia operation, surgeons were surprised to find a partially descended testicle. She also had no ovaries and no womb.
Her mother and father, who are both doctors, had been trained at medical school not to tell women if they had this condition “because it would be so devastating to them that they would commit suicide”.
But Katie’s parents broke the mould and did tell her some of the details of the condition to prepare her.
Katie was 18 when they told her the full details, which changed her world.
“I was really scared. I was not prepared to think about myself as totally and irreversibly different to every other woman. I wondered if I would ever be loved, if I was so different I couldn’t be loved,” she says.
Her testes were removed and she takes pills to give her more appropriate hormones.
Katie and her mother went on Oprah’s TV programme to talk about her condition and the publicity has contributed to more openness about DSDs in the US than there is in the UK.
“I think we have very inadequate definitions of what sex is,” says Katie.
“But based on what we do have I can’t say that I’m either male or female in terms of my sex, although my gender identity is very female.”
Dr Devore would also like to see the definitions of sex widened.
“The tyranny of being forced to circle M or F (male or female) on every form I fill out, I’d like to see that change, I’d like to have a lot more options.
“Typically what I do is I circle the whole thing so it is ‘MORF’, M or F – that is my favourite way of responding to that question.”
Me, My Sex and I will be broadcast on BBC One, on Tuesday 11 October at 22:35.
The following is reprinted from the “Savage Love” column where Dan Savage quoted Dr. Tiger:
October 5, 2011
by DAN SAVAGE
I am an 18-year-old straight male. I have a hodgepodge of birth defects that affect my genitalia: severe hypospadias (my urethra—my piss slit—is at the base of my penis), micropenis (less than two inches), and anorchia (I was born without testes). I have never been naked around anyone else. I don’t really like being naked by myself, to be honest.
Lately, my sex drive has skyrocketed. It is driving me up the wall. Couple this with the fact that women see me as attractive, and I’m not doing well. Sexual situations are presenting themselves to me and there’s nothing I can do. I’ve recently started college, and it’s endlessly frustrating to see my friends having relationships and being sexually active. I know that casual sex/flings will never be an option for me, but I am dying over here!
“His story is one that is very familiar to us,” says Tiger Howard Devore, vice president of the Hypospadias and Epispadias Association (HEA). “He should know that he is not rare and many with his kind of genital difference have learned how to communicate about their difference to potential intimate partners.”
You’re right, MUJ: Casual sex/flings—shucking off your clothes and jumping into bed with a girl you’ve just met—may never be an option for you. But you know what? Drunken college hookups last an hour or two, while the communication skills you’re going to have to develop to navigate your sex life will last a lifetime.
And you will have a sex life, MUJ, and there is a lot you can do. There are women out there who prefer tongues, toys, and touch to vaginal penetration. On the Savage Lovecast, I took a call from a woman who was worried she would never find a partner because, although she enjoys other kinds of sex, she’s physically incapable of vaginal intercourse; there’s a new dating website for straight men and women “who cannot engage in sexual intercourse” (www.2date4love.com); and if you fall in love with a woman who enjoys vaginal intercourse, sex shops sell strap-on dildos to men, too.
In short, MUJ, you have options. You also have role models.
“One of the most validating and reassuring experiences someone with genital difference can have,” says Devore, “is to meet with others who share their birth history and have dealt with the same issues of self-acceptance, shame, and isolation, and the challenge of intimate relationships.”
HEA hosts an annual conference and it’s coming up, MUJ. If you can get your ass to Chicago over the weekend of October 21–23, I strongly encourage you to attend HEA 2011.
“Connecting with others who share his difference is the best way to end his isolation and begin his healing,” says Devore. “At the conference, he’ll get expert information from doctors and psychologists, and he’ll meet men who have grown up just like him and have faced the same fears and overcome them.”
HEA offers financial aid to men who otherwise wouldn’t be able to attend—an experience that is life changing and, in some cases, life saving—and I’ve made a donation so more men with hypospadias can attend this year. I’m encouraging my readers to do the same: www.heainfo.org/Donate.html.
I recently was part of a documentary called “The Truth of My Sex.” It was produced by the BBC and broadcast here in the US on the Oprah Winfrey Network. Although I have done documentaries for PBS, National Geographic, and even the Discovery Channel, I have never gotten so many e-mails that made it possible to invite men from around the country to come and join HEA in Chicago at this year’s conference. Call it the Oprah factor….
These e-mails almost always speak to the shame, isolation, secrecy, and fear these men have about their genital difference. Many of them report such poor medical care that they avoid doctors completely. Often, they avoid relationships because they don’t know how to tell a prospective partner about their genital difference. Lingering resentment toward or alienation from their families can add to their lack of support.
Some of these people come to the conference. More about them in a moment. Others cannot face the idea of standing in front of other people and admitting to their genital difference, even knowing that they are at a conference full of men who share that difference. The fear and the shame are so deep, the secret so carefully kept for so many years, that they simply cannot attend, even though they want to and they know it would be good for them. Sometimes they will come in another year; sometimes they will ask to be dropped from the mailing list because the reminder that someone “knows” about them is too much to bear.
The ones who make it to the conference, the ones who face their fears and deal with how frightening it is to imagine talking about something they have kept hidden for so long, almost universally have the experience of the greatest relief they may ever have known. To hear other men telling a story they thought was only their own; about the family shame, the scary hospital memories, the teasing from other kids, the intrusion of multiple genital exams. As well as the stories that bring a smile of recognition: peeing on the toilet seat, always looking for a toilet with a door and a lock, remembering to drink a lot of cranberry juice. This experience of belonging, the one thing that has been impossible to achieve previously in their lives, is finally theirs. What a relief to be surrounded by others who know what you’ve been through without having to go into an uncomfortable explanation that might never be really understood .
Hypospadias is the most common congenital difference in human beings. Epispadias is more rare. There are millions of men living with them.
I know that coming to HEA can literally be a lifesaver. When I was a young doctoral student in 1984, I chose to appear on television to talk about genital difference. I was told by a researcher who had studied more people like me than anyone had before that I was the first he knew of who was willing to be seen and known as (what it was called then) a hermaphrodite. I did it not only to reach out to other people who had been born like me, and suffered as I had, but also to reduce my own sense of stigma, to stop feeling that I could never tell anyone and that if anyone did find out, I would simply die of embarrassment. I couldn’t have that hanging over my head, so I took control of the secret and let it out on national television.
So many people look at the HEA website. So few ever come to a conference, let alone join this organization.
If what I have written here has touched you, please come to a conference if you never have. Please write to the doctors who have treated you and encourage them to tell their patients about HEA. If you know someone with a genital difference who is still in isolation, please invite them to a conference. And please support HEA by becoming a member; it is so inexpensive in comparison to the good that this organization does for so many who come and have that great moment of belonging, as well as those who can look at the website but still believe that they can never let themselves be known.
As an adult male with hypospadias, I’m now facing having to go in for some surgery again after many years of staying away from hospitals for things related to my penis. As the surgery date gets closer, I find that I have a great deal of anxiety and emotions coming up, as well as many fearful thoughts of all the things that could go wrong. I’ve even thought about canceling the procedure. What tips can you give to help deal with the anxiety and stress leading up to a surgical procedure that has many bad memories attached to it?
Dr. Tiger Responds:
When any of us have to go back for surgery after many years of being free from surgery, we have to face the feelings that were last dealt with at the time of the previous surgery. So, if your last surgery took place when you were 13 years old and you are going back for surgery at 30 years of age, you have a bunch of feelings of a 13-year-old to go back and deal with.
The question refers to “a great deal of anxiety and emotions.” As adults, we want to feel in control of our lives, involved in our own medical decisions. As children, even as teenagers, many of us were not. Thus, the feelings that come up are those of a person not in control of the situation, developmentally much less well defended than the adult you are now. The fear can be great enough, and unmanageable enough, that we can make a poor decision and just cancel a procedure that we decided was necessary before our emotional unfinished business came knocking at our unconscious back door. This unfinished emotional business is retraumatization that is triggered by the upcoming surgery. Separating what is real right now from what isn’t happening right now and did happen back then is very important to making sense of how to contain the feeling of out-of-control emotions. This doesn’t mean that simply writing down the story of what happened to you when you were a kid is going to get you in control of your feelings and prepare you for adult surgery. To prepare you for adult surgery, there are good steps to take that will help to keep the past out of your current experience and that will give you both the tools to deal with feelings which occur and the chance to have a surgical and hospital experience that is healthy for you and doesn’t add to the trauma you have stored up from previous bad experiences.
Get someone on your team
Whether it is a spouse or partner, a best friend or family member, find someone in your life who knows your story, who knows what you went through as a kid, and who can help to keep you clear and calm as you approach and go through your procedure. If you don’t have someone like this in your life or just don’t want to go through that with him or her, then employ a therapist who is familiar with preparing for surgical procedures. Your doctor or hospital ought to have a referral for that.
Talk through your past, and learn about the present
The job of your support person, whether friend, relative, or therapist, is to be with you as you narrate what you went through in the previous hospitalization (tell the story two or three times in the weeks approaching the surgery) and to help you to relax as you recount the story and make sense of the differences in your life now versus then. If questions come up about the procedure, the hospital, or any aspect of what you think may happen to you, then instead of just making things up out of your fears, call the doctor or surgical intake nurse at the hospital to get some real information. You should be able to collect enough facts to be very clear that you are choosing this surgery because you know everything you can about it and you are sure that given your options, surgery is your best choice. Confidence in this is necessary so that nothing that comes up when you actually go to the hospital can send you back into the mind of the 13-year-old who is just responding in mortal fear. That is what all this preparation is about: to keep you aware as the adult in charge of what is happening to you, to prevent you from feeling out of control in a way that puts you in fear.
Visit the hospital in advance
If your “team member” can go to the hospital with you in advance and help to walk you through all that you will see when you go in for your procedure, then it will be familiar instead of strange and frightening. The admissions staff and your doctor can help to arrange to show you the steps you will go through in advance, starting from walking through the door, going through admissions, even what your room will look like. The sights, sounds, and smells of the hospital can trigger memories you might not have been aware of in your sessions with your team member. Making a visit in advance can help to reduce any kind of last-minute surprises you might experience when you go in for your surgery.
Have your support person with you on the day of the surgery
If at all possible, have your team member with you on the day of the surgery, at your side as you ride to the hospital and go through admissions, and even with you in surgery prep. Ask if he or she can stay with you until the last possible moment before surgery and be present as soon as possible after you awaken in recovery. Your support person will have been your reassuring guide for the last several weeks and can be that for you throughout this adult surgical experience. She or he is also your witness, so that as you reflect on this procedure after your hospitalization, your support person can help you to remember this experience as one for which you were well prepared and for which you had support that was as close to ideal as possible before, during, and after the surgery.
I am watching The Truth of My Sex on OWN and had to email you to say that I think what you are doing is wonderful. Everything you went through as a child was horrible, but it spurred you to go on to help so many other children and their families who are now struggling with the same issues.
I have 3 daughters who were born healthy, without any of the issues described in the film. Nevertheless, I am so grateful that you chose the career path that you did, and I wanted to write to say Thank You. You took something painful that happened to you and turned it into something incredibly positive and life-affirming. I think that’s fantastic, and I wanted to let you know.
Best regards, Lisa
In 2011 the British Broadcasting Corporation (BBC) decided to do a documentary about Intersex. Being a news organization with worldwide reach, they were able to establish a distinguished panel of medical experts and Intersex individuals, resulting in this film. Dr Tiger was used to bridge the gap between patient and expert.
The documentary was shown worldwide on BBC 1 under the title “Me, My Sex, and I.” The piece was also bought by the Oprah Winfrey Network (OWN/Discovery) shown in the US as “The Truth of My Sex.”
Whenever I am at a conference for people who are sexually different, I am always watching for signs of participants who are having unexpected feelings triggered as a result of the material being presented. Sometimes it is really obvious, like when a surgeon is explaining a technique for removing scar tissue and he makes a sweeping movement with his hands that indicates snipping away all the damaged tissue, and all the men who have had genital surgery in the audience groan and grab their stomachs or even run out of the room. That is retraumatization. The surgeon doesn’t mean to upset the audience; he is showing them how all the old damage can be removed and the repair can be made with fresh skin and better healing than ever before. The participants all react to the memory of pain in the genitals from having had surgery there before, and without any conscious thought, they demonstrate all the physical responses associated with that pain or the fear of that pain.
The retraumatization reaction isn’t always so obvious or immediate. Sometimes something that is said or seen will stick in the unconscious of the participant, only to show up sometime later (this can take years). I remember a presenter talking about kids being in the hospital preparing for genital surgery, and how sometimes a kid who is being placed on the operating room table can muster the adrenaline to get up and run out of the surgical suite, even though he was sedated before being wheeled to the operating room for the procedure. This presenter said that when the emotional support team is called to reassure and calm these kids, the kids are referred to as “runners.” I listened to the presentation with interest, enjoyed the information she was presenting, went along to the next session, and didn’t notice anything out of the ordinary as I went through the rest of the conference. Two years later, someone was describing to me how they had once been held down by an assailant and they were struggling to get free of being pinned. Like a wave sweeping over me, a memory came back of how I struggled to get free while nurses were trying to hold me still and anesthetize me for surgery when I was less than 7 years old. It wasn’t just a memory, it was like being there all over again. I remembered the presenter talking about “runners,” and for the first time realized that I was a “runner” several times when I was hospitalized as a kid. I was triggered by the story I was hearing and recategorized the memory on the basis of the presentation from the conference.
For any of us who have a history of trauma, we may find that unexpected events that are otherwise innocuous but still trigger memories of past trauma may occur in our daily environment. For many men with hypospadias, bathrooms can be a source of all kinds of anxiety and retraumatization. Think of how you may react if you are someone who has to sit to pee, and you walk into a public bathroom and see that the stalls have no privacy door. It is pretty common for us to remember being teased or embarrassed for being exposed sitting on the toilet in the bathroom when all the other boys were standing. As adults, we may just walk out of a bathroom with no privacy and wait to pee or go in search of a bathroom that does have privacy. All of that discomfort and waste of time is about retraumatization. This reaction can get more subtle. What goes on in your mind when you see a men’s underwear ad and the model has a more than ample genital bulge? All of these triggers for having the kind of genitals that “normal” men have (standing to pee, filling out their underpants a certain way) put us back into our trauma about being genitally different.
My guess is that as you read this, many of you can recall events which make you have that feeling of discomfort and differentness. I hear men say over and over that as a result of contacting HEA or being at an HEA event, they are so relieved to hear stories like the ones I have mentioned above because for the first time they are not the “only ones.” I realize that some of you may have been thrown into uncomfortable feelings just from reading this article. I encourage everyone who is affected by this material to talk it out with someone who you trust. If you feel moved to share your own experience of being surprised by something in your day-to-day life that triggered a trauma memory, please write back to me through HEA (anonymously if you prefer) and let me know if you would be willing to share it with the HEA community through this column. We help each other to feel comfortable with what we’ve been through by sharing these experiences and finding out how common they are, even if we don’t attach our names to the descriptions.
- Dr Tiger writes about Ashley Madison, affairs, and why they happen in the Winter issue of Las Vegas Woman.
- Dr Tiger talks about fetishes in the New York Daily News
- Dr Tiger calls for surgical moratorium on intersex infants on KNPR radio in Las Vegas
- Dr Tiger is featured in Las Vegas Weekly during Pride week for his representation of the Intersex community
- Dr Tiger on “Sex, Viagra and Menopause” in Las Vegas Woman magazine
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