Knowing when to give up.

[Marc]

I've been to a number of specialists over the years.
I've listened to their opinions and accepted the diagnosis, to a point.
Some doctors have said to accept my diagnosis and start living your life.
He was worried that this was holding me back in life.Well it has and is.
I have been persistent in trying to explain that there are more problems
than what they have diagnosed.
But in their opinion, and tests that have been done, they see no evidence to confirm what I'm saying.
I know that I'm right, and they are wrong, but I don't know how to prove this.
They are all well respected doctors in the medical community and their word is taken more seriously than mine.
I know my problems can't be changed and I need to finally accept them and live my life as best I can.
But I have a problem with that knowing I have not been diagnosed correctly.
It feels like I'm giving up if I stop pursuing this but at the same time I know it takes a strong person to accept things and move on.
If you were convinced that you have these health problems,but they have not been diagnosed correctly.What would you be prepared to do?
These doctors are just people who have been through medical school and had years of experience but have very powerful jobs.
They're making decisions about peoples' lives.
What would you do? How do I go about getting help? How do I prove what I'm saying?
Do I need to be more aggressive and demanding with doctors?
Are there other avenue's that can be explored, beyond doctors?
You have one life, am I just going to accept someone's opinion, even though I know they're wrong.
Are you willing to do anything to get what you want?
I don't think I'm a strong person, it's easy to say these things but applying them in the real world is a whole different thing.
Any suggestions from anyone on what I should do, or maybe not do?

[Sofie]

Sometimes, i think, our expectations, of what doctors can do for us, are too high. I don't know how doctors think and how much of their reasoning is influenced by their education.
If it was me (I know, I'm not you :) ), I would keep myself busy with doing my favorite things, eating my favorite food, decorating my room...
And No, I'm not willing to do anything to get what I want, if there's no door in the wall, I take the long way around.
Sofie

[Peter]

Hi Marc,

I went back and read all of your posts since you first started posting here. In a couple of posts you mention idiopathic hypogonadotropic hypogonadism. I quote from one post:

"I've been to a number of endocrinologists who have diagnosed me with
idiopathic hypogonadotropic hypogonadism. Also have been told I have hypospadias and gynecomastia."

To me it seems that a diagnosis of hypogonadotropic hypogonadism is the type of refined diagnosis that would be arrived at after careful medical evaluation of your condition. I am curious to learn why you consider the diagnosis inadequate? Do you believe that you have another intersex condition?

Sometimes people, who think that they might have one intersex condition, for instance by casually researching the Internet, later come to believe that they have another intersex condition. It's seems reasonable that as one's knowledge grows, that one's self-understanding might also grow. But, you seem to be in a different situation. You have been to many doctors, and have had many tests done. In your case, it would seem that a diagnosis of idiopathic hypogonadotropic hypogonadism would be based upon more than a cursory investigation of your condition. You mention that more than one endocrinologist believes that you have IHH.

If a doctor were suddenly to come up to you and say "Marc, we are terribly sorry, we mis-diagnosed you as having IHH, you really have condition X", what would you expect the diagnosis to be, and what questions would such a statement answer for you?


Peter

[Marc]

I'm responding to what Peter said and will try to explain in more detail.
When I was ten years old is when the problems began.
I was ridiculed at school, as well as outside of school, about the size of my butt.
I think big bum was the most common phrase used.
Then later on was ridiculed for having a very feminine walk.
People calling me gay or transexual.
I have a more female fat distribution with a very gynecoid shaped hips and a kind of a long thin neck.
Then there was the lack of facial and body hair.
It wasn't until many years later that I was diagnosed with "IHH", and was told about similar conditions like Kallman and Klinefelter syndrome.
My point here is not the condition I have, but the physical changes my body went through at puberty.
I want to go back to what I said earlier about being ridiculed for having a female walk.
I know everybody's gait is different, it's like a fingerprint, but that's NOT what I'm talking about.
An example is when I saw a physical therapist and he showed me a model of a skeleton, male and female.
He showed me the skeletal differences, like the pelvis shape and this is one of the reasons why men and women walk differently.
I've been to a number of endocrinoligists and told them that at puberty I know the skeleton that developed was female, not male.
They kind of look at me with a blank stare and have had comments like are you having mental problems or were you abused as a child.
I have x-rays done which were interpreted as being normal.
My problem is I'm trying to explain something that goes against everything that is known about the human body.
I'm trying to explain something that is considered impossible, which is unknown.
It's such an unbelieveable thing for anyone to comprehend, that the only explanation to give is it must be all in my head.It isn't.
As far as I'm concerned this is an isolated problem,I've never heard of anyone with this problem.
Now how in the hell am I supposed to prove what I'm saying.
Walking outside people see the way I walk and I get the stares and ridicule.
As well as confusion, man or woman?
What tests can be done to prove this?
I don't think any test will, it's doctors' belief system,that things are known and that's the way things are.
How do you even begin to explain something that goes against nature, that goes against everything that is known, beyond medical knowledge.
It feels like I'm literally alone in the world.
Do I see another doctor, try to investigate further and pay for my own tests
and show these results to them.
Internet medical help.EClevelandclinic, send them my test results and get their opinion.
I still think seeing is believeing, that doctors have to see me and admit to themselves and me that this problem exists, regardless of what tests say.
What do you think I should do? Stop searching for answers, just give it up.
Can anyone give me a realistic answer or approach?

[Morgan]

I'm not a doctor, but I would imagine that your pubertal hormones were as responsible for determining the shape of your skeleton as much as they are for determining your fat and muscle distribution.

I can understand what you're saying, because my own experience is not dissimilar.

But I can also understand what the doctors are saying when they tell you that you're normal. Men and women aren't physically too far from each other. There are slight differences in height and hip size, but these are only based on average measurements. Few of us are average.

Have you ever seen a programme on archaeology where they're trying to determine the gender of a skeleton? It seems to be a tough job, subjective, and prone to error. "Was the body carrying a sword? must be male..." "A necklace? must be a woman"...

I've also come to appreciate that medical definitions of normality are dependent on context. I've had a testicular scan which said "small" and "normal". Normal in that context just meant "doesn't have testicular cancer". It didn't reflect the fact that they were non-functional. Different tests determine that.

A normal skeletal x-ray might mean "normal human being", or it might mean "normal, nothing broken or missing".

The question, to my mind, is what do you want to do about it? I doubt that anything much can be done about your skeletal shape except painful and costly surgery.

Morgan

[Dana Gold]

Can anyone give me a realistic answer or approach?
Dear Marc,

It would seem to me that you are having trouble accepting yourself, based upon the observation that people do not accept you as you are.....that I can understand and empathize with. It also seems to be that you are trying hard to prove to yourself something which would be derived from "doctor's proof" gained from a specific diagnosis that states : It has been proven that patient walks and has anatomic features, etc due this medical condition : "IHH or whatever".

Reality is: No medical doctor will ever suggest to you that your physical anatomy is linked to mannerisms and/or psychology ....because not all genetic males with IHH are the same as you, just as not all genetic males with my type of hypogonadism are physically and psychologically the same as I. Doctors are legally and ethically bound to tell you medical findings only......what you do with yourself, how you view and/or accept yourself is out of their legal/ethical responsibility....and in many cases, their knowledge and expertise. As such, the reality is that only you have the freedom and responsibilty to judge and direct your life as you deem best for you. If you do not like your body, then "fix it" the way you wish (i.e. hormone therapy; "one-way or another").....if you choose to enhance your male features, I'm very sure the doctors would be delighted to help you (even with insurance coverage ).....if you decide to "stay the same" ....then accept yourself for what you are, move forward with living, and "to h*ll with the people who don't accept or ridicule you." Are you going to let them "squash" you into submission? Do you really think such people will accept you and like you more if you tell them you are like that because of a medical condition? Many here at BLO have gone through a similar experience as you , and worse. Although a definitive diagnosis is paramount to any individual here (especially when one's health is at stake), the important thing that I have learned is that it may be counter-productive and cause further alienation in relying too heavily on external sources to define yourself and to seek proof and direction for your life from the same. The question you ought to be asking yourself is "why am I still seeking proof of my existence (physical and/or psychological) when I know already that it is evident that none other but I can give it to me"? I gather you are basically healthy.....be grateful for that and seek your own happiness, instead of being dependant upon others. I'm not telling you to "give up"... on the contrary; I am encouraging you to take a different direction with your life....it seems that the current trajectory is a "slowly disintegrating orbit"......"Round and round you go..it's very likely you're heading too low"

Dana

[Peter]

Hi Marc,

Thanks for your response. You face many difficult issues, but I am not sure that they will be addressed by additional medical tests. The other day, I told a good friend, "Forget about gender dysphoria, I have total body dysphoria". It's really true. I am generally very uncomfortable in the presence of both men and women. It's not gender specific; it’s across the board. The only time I have felt psychologically grounded is around some intersex and trans people.

As a child who had been surgical assigned "boy", I was constantly teased. I was so outside the norm that I was not allowed to join the Cub Scouts. Also, I was born with a hip deformity. The condition is called "severe hip hyperplasia". I had to go through two rounds of full body casts as a child, because the first round led to massive ulceration and eventual scarring of the left leg. I believe that having a name for what causes a different gait is often no help in the end.

I have mixed emotions about the possible connections between leg deformities and intersex conditions. I know that in the popular imagination, there is a connection between being lame and a hermaphrodite. See the Bergman movie "Fanny and Alexander" for an example of a lame hermaphrodite character. There is also a long standing association between "club foot" and being gay. I know that in San Francisco, at one time, there was a gay musical group called the "Club Foot Orchestra". Maybe there is a connection, maybe there is not.

I know that in my case, seeing a podiatrist really helped me. The podiatrist measured my legs and found that they were of different lengths. I now wear a special shoe insert with a lift built into it. It helps me greatly.

I don't have time to address all the psychological issues that might be involved in your situation. Indeed, I could write a book. But in the end, what is important is not my book, but the book of life that you write for yourself. I recommend turning a new page, and writing a new chapter.

Peter