A Rose by any other name...

[Wyn]

Dear Friends,

I feel I must apologize for not writing here in the forums over the last number of months. I needed a break as I have recently come to the sad and horrific realization about my physical state of being due to a test that was accomplished in late September, and recent additional physical discoveries.

The test was a MRI. The discoveries were additional scarring from my IGM. The MRI indicated a “normal male pelvis”. The scars consisted of a 4 in one on the left thigh, and another was where my vaginal lips were sewn together. The thigh scar was due to the harvesting of a small length of artery and vein to allow the removal and lowering of my ovo-testis from it’s connection to my uterus/fallopian tube, into the scrotum, after removal of the uterus, cervix, and upper portion of the vagina. The vaginal scar was made to look like the central ridge of the scrotum, but due to recent stretching, the suture scarring has now become visible.

I was born a feminine ‘true’ hermaphrodite with one testicle, one ovo-testis, and a Y chromosome, that was surgically made to look like a boy. But that is all I will ever be – a boy. Not a man – as I have generally feminine tissue due to my PAIS – but a boy. I do not look like the “50 y.o. Man” that I’m ‘supposed’ to be. I’m physically more akin to a FtM trans person that has undergone 30 years of testosterone poisoning. Since the advent of my recent female puberty, I’ve lost close to 40 pounds, and my torso has become significantly feminine, but my limbs and head are more masculine than feminine due to the early masculinization of my skeleton. However, as I have finally fully ‘matured’, my body has begun to ‘break down’, and the somewhat masculine aspects of my physiology are too. My arms have been the first to feel this, as they are in a state of constant pain due to their ‘excessive’ use/abuse in the physically demanding environment I work in. I don’t know how much longer my body will be able to take this punishment.

Had I been ‘left alone’, I would have developed as a female with a small penis. There may have been a small amount of male development, but it cannot be known as to how much. It is my suspicion that I would have first gone through female puberty at about 9 or so, and later, at about 14 or so, I might have gone through male puberty. However, the advent of female puberty may have delayed or eliminated the maturation of the testicle as estriadol production would have caused the cessation of spermatogenesis. This is the primary reason that ‘true’ hermaphrodites rarely sire children. Only three have been documented - this fact is borne out through documentation on “ovo-testis” that I provided a number of months back.

I guess that makes me number four. But, that is due solely to the surgical intervention of the butchers who did this to me. What is most horrific about my experience, more than anything else, is callous, brutal, arrogance of the so-called ‘doctors’ who used deceitful and immoral, if not illegal, means to insure that they got to play doctor, and perform their experimental procedures on a “bastard hermaphrodite child being put up for adoption”. They told my adoptive parents that I was a “Perfect Specimen”. What they meant was that I was the “Perfect human guinea pig” – the Perfect Lab Rat.

I’m now going through counseling, but it remains to be seen what, if any, help it is. The psychiatrist is intelligent and thoughtful but, just the same, is something of the ‘old school’ line of thought. It seems to me that he’s just following the established protocols – i.e.; keep me in the ‘male’ camp, but letting me ‘experiment’ with my ‘female’ side – just don’t take it too far!

What else is there to say? The emotional scarring from the brainwashing and lies required to enforce my male assignment will never truly heal. I still have all the female ‘programming and wiring’, along with a small portion of my ‘plumbing’ that I was born with, but my body has been horribly mutilated and mutated into something it was never meant to be. I don’t hold out a whole lot of hope for the future. I will never be able to feel ‘whole’ – too much was taken away when I was an infant, and even more was destroyed during my upbringing.

Anyway, I just had to let you all know what I was dealing with, and thought it would be good for our community to know one more ‘story’ of the how the medical community treats ‘us’.

Forewarned is forearmed.

All my best to all of you.

[beach]

hi wyn , wow your story is interesting , and your surgerys and scar placement ,are so diffrent than mine , i was 13 when my surgerys were done , and the delayed puberty is interesting , hitt me all at once , if you want to talk , im here .. beach

[Wyn]

Hi beach...I had written an extensive reply to your kind response, was proof-reading it, and I guess I typed a little too quickly - I still do not know what keys I hit, but it VANISHED!!! It happened at 11 pm, so I had to call it quits for the night. I'll reply to yours and others when I have a little more time.
All my best

[melonaide]

I can hardly believe that doctors go that far. I realize that certain proceedures are neccessary to avoid health problems but I don't understand all the risks that are involved with doing nothing. what do you think they should have done?

I am so sorry this happened to you.
I don't understand how they could do this and expect everything to feel normal. I can't believe a doctor who has an obligation to the well being of patients could actually do this to an unknowing child with his own hands. Why would they do that? What is the medical reason they would do that?

[Jay]

I had to read your post several times, because i wanted to make sure i knew the horror that i might have been put through had my parents had the money. the situation was different than yours, and i empathize with you, but i feel i will never know the true pain it was, for that is very personal. i would have been made a girl and forced hormonal treatment, all to go through puberty as a male. but i don't know why i was spared and you were not, other than your statement about being an orphaned guinea pig, as horrible as that sounds, they probably saw you as exactly that. no one should be subjected to that at birth, and only until they see what kind of puberty, if any, the child will go through. i wish you the best, and i will write back soon i'm sure.

[Wyn]

Melonaide and Micro'
You can't know how much your empathy and concern means to me. I am still coming to terms with this info and turn of events. Why the doctors chose to use this radical approach is primarily due to the mindsets of people in 1955 regarding the issue of 'hermaphroditisim'. Of note is that it was in 1954 and 1955 that John Money issued his first publications.

While I do not have a copy of these items, I became aware of them through a google search of 'John Money' at the time of David Reimers death, although I recently tried to find them again, with no success. I suspect that since David's suicide, Mr. Money's 'popularity' has waned, and few wish to be connected with his works.

In the online overview of these initial works, it was suggested that Money's first musings of the psycho-sexual 'neutrality' of infant's minds first became known through these publications. He felt that any child could be raised as either a boy or girl as long as the surgery was perfomed 'properly' and early enough. In 1955 these concepts were seen as a 'solution' to the problem of 'hermaphrodites' and the challenge these conditions made to the entrenched Judeo-Christian principle of a stict biological binary viewpoint, regardless of the biological facts. As such, Money's concepts were embraced by physicians charged with finding an answer to the 'problem'.

It appears that I was a perfect case with which to test one approach to the 'solution' due to my particular set of circumstances. I have noted that in an emedicine topic on ovotestes(#1709?) that in the case of 'true' hermaphroditisim, the assignment, so long as the phallus was 'viable', should be male. So, when they operated to fix the right side hernia, and found the Mullerian structures, the decision was made to make me as much of a 'man' as possible through their removal, without concern for any other effects - physical or psychological - as that was beyond their scope of concern or underderstanding regarding the invasiveness of their actions on the psyche of and infant.

The primary driver then, as now, is to make any abnormallity as 'normal' looking as possible, while still preserving reproductive 'viability' - at least at that time. In fairness, there was no way for them to discern whether or not I had PAIS, so their approach would have seemed 'reasonable' at the time, given their overall lack of knowledge, although time has proven that it wasn't. It also highlights the fact that doctors cannot know all of the myriad number of syndrome combinations and issues possible with Intersex conditions and the associated complications, and as such, only reinforces the need to hold off any irreversable surgery due to these uncertainties.

However, since then, it appears that some of these surgeries have become more and more invasive and destructive of reproductive potential due both to the technical ability to do them more 'safely', but also because more hospitals can now perform them, with the resulting increase in the number of doctors getting involved, regardless of their ability or desire to 'do what is best' for the child.

I feel that there are a number of these cases where the child's reproductive needs are overlooked entirely, and may perhaps reflect the underliing prejudices of the attending physicians. It is possible that their desire to create said 'normalcy' is to allay both their own, and the parents's fears of homophobia.

Moreover, the potential for 'morbidity' of intersex structures seems to become highly exagerated by some practitioners of these surgeries, and these opinions are foisted on the parents of these children, regardless of their inacuracy. I have observed that both issues, homophobia and cancer, seem to crop up with regular frequency when discussing intersex, regardless of any supporting facts.

As to what I feel should have been done in my case. In the 'perfect world' scenario, all that should have been done initially is that my hernia should have been repaired, the testicle lowered, and that is all. Then, I should have been monitored as I grew, primarily in terms of psychological needs, with counceling provided as the need arose, or as the physical conditions dictated. At the appropriate time, prior to any puberty, it would have been determined what would be the best 'course' for me - if indeed ANY 'course' should be suggested or enforced through surgery.

I should say right here - I feel that the imposition of a binary sex assignment in any IS case, but particularly in a true herm', is unethical and immoral, and points up the true problem - that of being an intolerant society that has been blindfolded to biological truths.

We do not see anybody advocating the 'normalization' of the appearance of children with Down's syndrome, (which has the same general numbers for occurance in the birth population as IS conditons) and for good reason. To attempt to do the required procedures on such a child would be seen as barbaric and immoral for we all know that one cannot change the child's mind through surgery on the body, and that the physical and psychological trauma inflicted would be unacceptable to a rational person. To do the same in the case of a true herm', or for that matter, any IS child, should be viewed in the same context.

At this point we could get into the issues of 'informed consent', but that is a whole other subject. Again, the problem of the attending physician's mindset and training (or lack thereof) of IS conditions becomes a major factor.

Wow - I guess I can get carried away with this issue due to my current entrenchment in the subject, so I'll end it here. I do appreciate your concern and curiosity - I too am trying to understand all of the implications of this turn of events and truthfully, have only begun to come to some conclusions about what to do. There is still a long road ahead of me which, at the age of 50, only makes my desire to 'finalize' these decisions all the more critical.

I will say that getting the medical community to both react and respond in the fashion that I feel is required, is extremely hard to achieve, and only causes more pain and confusion on my part. In so many cases, it appears that they choose to reinforce the current assignment, as to do otherwise would be admiting that they (the medical establishment and the protocalls used) were wrong or flawed - something that is totally unacceptable in their world view. So, the problem continues to 'fester', with no resolution in sight at present, but, perhaps soon, as I do get some understanding and encouragement through my councelor, and I'll be seeing a new doctor who I have been told is 'young and progressive'. I can only hope this is true.

Wyn

[melonaide]

I gather from your post that information I read which I might have a hard time locating quickly, about the occurance of cancer of gonads is not as common as they are saying and thus results in such things as the unneccessary removal of them in many cases.

[Wyn]

melonaide,

From the little I have read, cancer is not usually an issue with any newborn, much less those with IS conditions, unless the gonads are merely 'streaks' - non-functioning masses of tissue. In typical IS conditions, without 'streaks', usually any incidence of cancer occurs during or after puberty. The numbers I have come across indicate a range of between 3 and 16 percent, but it is not delineated as to when this may malignancy occur, but it is suggested that malignancy may occur at any time after puberty.

In the literature I've been exposed to, the major incidents of these cancers usually occur in testicular or testicular-like tissues, thus the almost ritual-like removal of these gonads in so many IS children. Also, the type of IS condition or conditions are surely controlling factors of these numbers. In terms of learning what the incidences of cancer are, I have found that you typically need to go through a series of individual articles about specific conditions to get more specific numbers.

Hope this helps.
Wyn

[Betsy]

It's extremely rare for gonadal tissue to turn cancerous before the person is an adult.