Not to be all dramatic and everything, but I could seriously use a break at this point, and I hope that some of you may be able to help me with it. As some of you already know, I have been trying to get my intersexuality condition acknowledged and medically tested/defined for the past 5+ years, without much (any) luck. More recently I have been trying to get the irregularities surrounding my treatment by doctors and psychologists into the media, to hopefully help both my own case as well as those of others like me. Today I heard that the only remaining magazine interview I had coming up has been cancelled because another journalist was 'working on something similar'. This after another string of cancellations by a number of TV shows. At this point I have nothing to expect from and no more contact with the Dutch hospitals and media here. This means that I won't be getting the answers to my medical questions, nor any explanation for why I have been treated the way I have been by the 'specialists' in this country. It's apparently time to find some salvation outside this country, yet I lack the contacts and money for doing so. I would be most grateful if any of you could help you with this, whether it is by getting me into some foreign publication or TV show (tried contacting a few without luck), or by getting me medical assistance (as part of some doctor's research perhaps?). Thanks in advance. If you need any more information, my site should offer most answers. I can answer any remaining questions.
The problem with the media (with which I have had a few cursory brushes myself) is that they treat topics like fashion. Certain issues, for whatever reason, suddenly are in vogue and everybody and their dog talks about it; then equally suddenly they lose interest and move on to another topic. The world of news and media is self-centered and just a bit sociopathic. I am always extremely uncomfortable in dealing with them. Hooking into research may be more fruitful. I would start talking to some of the scientists that study this area --who you can find by finding out who has been publishing on the subject. Time to hit Google Scholar. Keep in mind that you need to find people who are doing research currently. The bigger a researcher is in the field, the less likely they are to deal with individual requests for help as they get these very regularly and are already very busy with umpteen projects --unless they are doing something right now for which you fit the bill. However they are most likely to be able to point you in the direction of colleagues who can help you, as the big players are very well connected indeed. The British Psychological Society's members' magazine, The Psychologist did a special issue in 2004. Find the .PDF here. This identifies Lih-Mei Liao and Mary Boyle as major players (they can be found via the BPS register of Chartered Psychologists here). The British Psychological Society also has special interest divisions and sections where professionals with a common interest or field of work meet up; one of these is the Psychologies of Sexualities Section. The Committee link lists people you can contact. I would think they are the best people to know what research is happening at the moment and how you can hook into that. Let me know if you need help with that. There is also the UK Intersex Society, which is an education, advocacy, campaigning and support organisation which works on behalf of intersexed people, and GIRES (Gender Identityt Research and Education) which has a bunch of useful looking contacts. Internationally, there is the Internationale Vereniging for Interseksuelen. In the US, Anne Fausto-Sterling at Brown University is a major player. You will probably already know about these, but in the Netherlands is the website http://www.interseks.eigenstart.nl/ (which I think is actually not that well-designed; the commercials give it too much a freakshow kind of edge). Movisie (Kennis en Advies for Maatschappelijke Ontwikkeling) does a document here.
I agree with Nexxo on this, the uk is far more in tune with this kind of thing than most other countries.
Ironically, usually it is the Netherlands, Germany and Scandinavian countries that are the most progressive on issues of sexuality. The UK is still kind of stuck in the 70's. Else Lotte van der Rijst at the University of Utrecht published on the topic; she may be worth approaching. ZonMw is also particularly interested in more research (link). Main players identified there are Arianne Dessens, Psychologist at the Sophia Kinderziekenhuis (Childrens' Hospital) in Rotterdam and Peggy Cohen-Kettenis, head of the Genderteam at the VU Medisch Centrum (VU University Medical Centre).
And yet she seems to have hit a wall in her own country on another note my wife and I knew some one years ago that got a sex change on the NHS quite a lengthly process but got it in the end. TBH not a subject I know much about.
Bizarrely I recently read that one of the most liberal countries when it comes to sexuality and particularly sex change operations is Iran as a legacy of the revolution in the seventies. Not that that helps you much unfortunately. It also occurs to me that one of the reasons you have had so much resistance from the doctors and hospitals you've dealt with is that while you may not have any interest in suing them (or maybe you do, I don't know) your insurance company almost certainly would. I'm not sure that there's much I can do to help in this regard, I don't have any contacts in the medical field but if I do think of anything, or if you think of anything please let me know and I'll do what I can. Moriquendi
I have had dealings with her already. She was one of those who brushed me off. I'd rather firebomb the VUMC than ever go back there again. I'd appreciate it if you could contact some of those people for me. It's really difficult for me at this point to even read about intersexuality and related, let alone try to convince someone to have a look at my case. Having a 'colleague' contact them may help too Anyway, thanks for the help so far.
Yeah, sometimes that happens... people get well-known in their field and they get a bit snobbish. I think before we contact anybody we need to establish clearly what you want/need. I am gathering that you would like another MRI scan to establish whether you have a vagina. Are you looking for any other physical examinations besides that? Once you have the results of these examinations, what answer(s) would that give you: what would the answer(s) mean to you in terms of your psychological adjustment? Where do you see yourself going from there? What further help would you need for that? These are all important questions to answer. Nobody is going to splash out £500,-- for an MRI and associated consultation just for curiosity's sake (as they will see it. Well, not unless you pay for it that is). And because MRI's can be hard to read you may not get a definite answer unless someone is prepared to cut open your perineum and do some digging underneath and I can tell you right now no surgeon is going to do that unless it is part of gender reassignment surgery. You need to be able to present a clear rationale for what you want, for instance "I want to know whether I have a vagina because this will have implications for the gender reassignment surgery I am planning". Saying: "I want to know whether I have a vagina because I'm curious to find out what gender I am" will not work --especially as you are sitting in front of them apparently already having decided that you are a woman despite the very obvious presence of a penis. I know it is more complicated than that. But I get the impression (and I could be wrong) that you are pursuing an answer without really having thought about why you are asking the question. That does not mean that the question is wrong or that it does not need answering, but you need to know for yourself why you are asking the question, and what the answer would do for you, in very clear terms that others can understand. Nobody will join you on your quest if they do not understand it. Nobody will be able to empathise if you do not clearly explain it to them.
Well, above all I'd like to have some idea of what I am exactly. I know I'm intersexual, but that's about as descriptive as saying that I'm human. I'd like to know what it is I'm feeling there where a woman would have a vagina. Others and myself can feel it as a kind of 'hole', not sure about what medical term to use but it feels similar, gets more 'loose' when sexually aroused which allows penetration (as far as the skin allows), and it's a primary erogenous zone for me. There's also the matter of my body apparently producing only ~25% of the amount of testosterone a male body would produce. Further my penis lacks a foreskin, has thin, fragile skin and in terms of sensitivity during sexual intercourse it doesn't feel like a regular male penis. Finally there's the matter that while a male to female transsexual will continue ejaculating due to a still functioning prostate, I have no ejaculation at all, and this has been irregular/weird even before the hormone therapy. So, what's up with the testicles or whatever they are, and do or do I not have a prostate? So far 3 distinct sets of MRI images have been made and I doubt any more will be useful at this point. Germany maintains that a vagina can be seen, or at least some weird growth of the urinary tract. As for what the results would mean for me, it would finally allow me to look at myself in the mirror and see something/someone defined. Not just a 'something', or 'maybe this, maybe that'. I would be able to say 'this is what I am', to myself and to others. It'd mean a great deal to me to have certainty. I have already decided for myself that I'll not pursue any surgery of any kind if there isn't anything already naturally present, like a (proto-)vagina. I want to be myself, not pretend I'm something I'm not. I'm intersexual and this will never change. I think I mostly need just general support. No talks with psychologists or kin, as I have had more than enough of them (no offense ). Just friends and family and just maybe a relationship with the newfound confidence once I know WTH this body actually is. It's mostly the uncertainty about what my body is, and the frustration/pain about my treatment by 'specialists' so far.
Only from Nexxo will you ever read a statement like that. (Don't mean to derail thread, best of luck Elledan)
nexxo just likes squeezing in private parts into any conversation.. well you seem to be leaning towards being a woman- so why not go that way instead of having someone tell you.. and having a thin skin on the ribbeater is normal.. your ball skin should be loose though- like if you really wanted to, you can stretch it over someones whole face.. just sayin for comparison
I'm not looking to become anything. Would be kind of hard since I don't even know what my starting point is. It's like saying you want to travel to New York City while you may as well be in Los Angelos, Sydney or Amsterdam for all you know. It just doesn't make sense. I mean a thin skin in the sense that I regularly have open wounds on it Oh, and on a sidenote... I'd like to see whether there is a genetic explanation for my body as well. At the last hospital they claimed I have pure XY, 46 genes, yet they also admit that I do not have AIS, meaning that I'd be a completely unexplained and unique case genetically. It just adds to the confusion at this point
I have nothing to offer in the way of advice.. but I would like to say that i do feel for you. This is a issue I really had no idea exsisted untill I started reading your thread. I wish you all the luck in the world in getting your answers. Dont lose hope!
This is may sound insensitive, but why do you need medicial scans etc to decide what sex you are? You are you! It shouldn't matter a damm what anyone else thinks or says. If you say you're female and in your mind you feel or consider yourself female then you're female! Screw what anyone else says or does and vice versa. If you feel male then you're male. Its your body and your life. If other people have hang-ups over it then let them, it's their problem, not yours. At the end of the day, you are you! It doesn't matter if you have a penis a vagina or both they are only physicial aspects; a part of you but not a part that should decide your entire life. Decide what you want to be and decide what you want to do and then go do it! If anyone has a problem with it then say 'to hell with them' and go over them, though them or around them and carry on doing what you need or want to do - it's that simple.
I don't know why I would want to be something in particular. The only thing I know is what I am intellectually, but my giftedness has always been pretty apparent, so there has never been any doubt there. When it comes to emotional matters and my body, there's more of a black hole. I have never understood anything about my body, never been able to grasp why it's different than those of others, or in what way exactly. It feels like everyone is presenting me with a pile of photographs whilst saying 'this could be you', while I'm desperately searching for a mirror which could show me what 'me' really looks like. Could I get just one glimpse, please?
The way I see it being different makes you unique even special and this is how you should see your self. And what other people think is not worth a t*ss. I hate the way people think everyone should fit into their idear of whats right, You should be judged by what you do.
So you have already decided that the answer does not lie in more MRIs. You have an XY gene set, non-functioning testes and prostate, a rudimentary penis and vagina. Psychologically you feel most like a bisexual woman. You are looking at your body to clarify how you feel. But it does not correspond to how you feel so you are trying to find out anatomical facts about your body that will help you change your perception of it until it matches better with how you feel, in the hope that your body will then name your feelings for you. You may never find out why your body is intersexual. It just is. Gestation is such a complex process that all sorts of things might have gone wrong, for no apparent reason, while having a perfect gene set. AIS does not only lie on a continuum (resulting in anything from infertile but otherwise fully-formed males to infertile, but otherwise fully-formed females except for an absence of a womb and working ovaries), it can also have a range of genetic and cellular causes. Then there are also other XY conditions with some AIS-like features: 5 alphareductase deficiency, 17 keto-steroid reductase deficiency, XY gonadal dysgenesis (Swyer Syndrome), Leydig cell hypoplasia, Denys-Drash Syndrome, Smith-Lemli-Opitz Syndrome. (incidentally, the UK AIS support group can be found here.) It is undoubtedly useful to have an identified medical condition because it helps in accessing support groups (although the AIS group, I think, would be happy to have you without a formal diagnosis). But the question you need to ask yourself now is: if any of these conditions could be pinned on your body, how would that in any way help to cast light on the black hole in your heart? What you need to explore is what your body means to you. You really already know what your body is. I know that you've had your fill of psychologists (possibly you didn't meet the right one) but it sounds to me that it is the emotional black hole that you need to explore and resolve, not your body. Seeking more medical data is just a distraction from that. As Ryu_ookami says: you are you. Who that person is lies hidden in that turbulence of feelings, not in your genes, not in your pelvis. "There is no gene for the human spirit" --GATTACA
Without medical facts about my body I can't have a sexual identity. Without the facts there'll always be uncertainty, and that's one thing I can't stand, if only because I am so tired of having to answer questions people ask me with 'I don't know' all the time. Also, it shouldn't be that difficult to get proper tests done and some actual clarity on what can/can't be seen on the MRI scans (it's a 50/50 toss-up whether or not anything special can be seen on it right now). At this point I have been lied to so many times by doctors that I'm not sure whether the genetic test results can be relied upon, or anything else they have told me. Having these same tests performed by someone I do trust would go a long way into alleviating these concerns. I'm intersexual, I'd like to know what is going on with my body, whether it poses any concerns for the future (not all types of intersexuality are harmless), whether there is a possibility of surgery/treatment (if a (proto-)vagina is present) and basically get me some answers to some basic questions. At this point I can't explain to a potential partner what I am, how or why my body works like this. It really doesn't help matters along to have no certainty about anything. And I'm not in the business of self-deceiving. I'm not going to pretend something is true while it isn't. Even if it means having to virtually discard this body.
I don't think doctors were lying to you --they were giving you their opinion. They may have been patently wrong, but they did believe what they told you. But what you are saying is that you have not been able to establish trust with each other, which is vital in a doctor-patient relationship. The doctor-patient relationship has a strong attachment (in Bowlby's sense of the word) dynamic. You need something of them, and they (being ever so slightly co-dependent) feel the need to give it to you. If they do not clearly understand what you need they cannot give it to you. You get frustrated with them, they get frustrated with you, it all gets very fraught. I see it all the time in my job and frequently, it becomes my job to resolve this conflict. Statements like "I'd like to know what's going on with my body" expresses a very human and understandable concern, but gives medics absolutely no clue what to do. They don't think that way. Be scientific with them. Say something like: "I need a diagnosis of my condition because I have concerns that I might be at increased risk of testicular cancer or osteoporosis in later life. What tests need to be done for that?". That is stuff they understand. The medical facts you already have: - You appear to have rudimentary genitals of both sexes - You have an XY gene set - You do not produce enough Testosterone What you want: - a diagnosis of your condition --this will tell you whether you are at (slightly) increased of testicular cancer or increased risk of osteoporosis for instance and allow you to access the right support group. Am I right? For what it's worth, I'd have a look at this and this and get in touch with the support group to help you shape your medical requests.
Well, my own research so far has indicated that XX/XY hermaphroditism is the most likely explanation for my condition. AIS has been excluded as a possibility and other forms of IS have been ruled out as well due to a lack of matching symptoms. So far I have heard hermaphroditism as explanation, as well as the aforementioned autoparagynaecophilia, and of course transsexuality (VUMC) until this got shot down by a sexologist (AMC). It's been an amusing ride with specialists grasping for straws and at least in my eyes displaying their incompetence/ignorance. To put it briefly, with the current list of symptoms I have I find myself arriving at XX/XY hermaphroditism or similar. The 'facts' I received from the Dutch hospitals either don't match up or the symptoms are ignored altogether. You are definitely correct that there is also a fundamental lack of understanding on the side of the specialists, which has many times led to me having to explain what intersexuality is, what causes it, why it's different from transsexuality and which tests exists for it. They absolutely do not seem to grasp the fundamental issue, which is one of the reasons for the frustration on my side. I'd very much like to get into contact with a doctor or kind with actual experience and interest in intersexuality, not just some people who think that anyone who isn't 100% sure about his/her physical appearance matching his/her gender is a confused transsexual. People get taught during HS biology classes how their bodies work, why wouldn't I have a right to the same kind of information?
