What does it feel like to have Klinefelters' syndrome?

All I know too, living with KS just plain sucks, plain and simple, none of us r supposed to be this way, but we r, and it just sucks, I absolutely hate being like this, feeling of being stuck n the wrong body, and know what u should have been ,it never gets any easier knowing about this, but I'm beginning to think like u, can't b a god, cause was supposed to be perfect, well news flash, I'm not, and far from being so, I'm trying to cope with this, but I'm reminded everyday I'm not who I'm supposed to be, I've had cancer 3 times and I would rather deal with it, than deal with how I feel and look, cause my cancer can b treated, and n most cases cured, but KS can't, I hate it, plain and simple.  

Posted March 21, 2018 -

I am a Single, White Male, 6 Feet, 6 Inches Tall, Age 48, 446 Pounds (202 KG) I am from Michigan, United States and yes I have Klinefeltors Syndrome (XXY), I was diagnosed at age 10. I was a skinny child until puberty around 9, Where I gained about 10 pounds per year. By

Age 09.......175 Pounds or 079 KG,

Age 14.......225 Pounds or 102 KG,

Age 18.......325 Pounds or 147 KG,

Age 48.......446 Pounds or 202 KG,

I was bullied as a child due to weight gain, braces, glasses, (typical nerd), Times I would feel I was smarter then the average male then other times I felt I was very stupid (ADD) I feel like I was on a Roller-Coaster Ride of emotions. At age 15,I was suicidal due to failing the 7th grade (Algebra & too many tardies, thanks to mom taking me to school late always) and Age 28 due to having to file for Bankruptcy being over $45,000 in debt due to credit cards and 3-days in Emergency Room with No medical insurance. I was a workaholic and worked 52 jobs in 15 years, I loved the money vs the social life. I am Disabled and on Social Security which I receive (Government Aid) for life due to my permanent disabilities. Since then I am now Debt-Free with a Credit Report Score of 578 (Needs Work) and 978 Auto Credit Score (Excellent).

I will list all my diagnosis that I had, so maybe we can all relate and see if we all have the same problems or not as I am curious to know:

My Conditions:

 ============

¦ Depression 

¦ Anxiety

¦ Panic Attack Disorder

¦ BiPolar Disorder

¦ ADD (Attention Deficit Disorder)

¦ Suicidal (Age 15 & 28)

¦ Chronic obstructive pulmonary disease (COPD) 

¦ Chronic airway obstruction 

¦ Chronic kidney disease (CKD)

¦ Swelling of the ankle, feet, or leg  (Cellulitis, Dermatitis, Edema) 

¦ Coronary artery, anomalous origin (Sudden Death)

¦ Underactive Thyroid (Hypothyroidism)

¦ Seizure Disorder (Epilepsy)

¦ Kidney Stones (Every 9 months or so)

¦ Gallstones at Age 47 (Dr refused to remove gallbladder due to 475 pounds)

¦ Sleep Apnea

¦ Insomnia

¦ Snoring 

¦ Acid Reflux

¦ Iron Deficiency (Anemia)

¦ Vitamin D Deficiency (Severe - Age 48)

¦ Muscle Spasms (Mid 30's)

¦ Back Problems

¦ Dislocated Hip (Due to Seizure in 1980)

¦ Enlarged Prostate (Benign Prostatic Hyperplasia)

¦ Motion Sickness / Vertigo

¦ Gout

¦ Constipation

¦ Hemorrhoids 

¦ Flu (Yearly even with Flu Shot)

¦ Pneumonia (at Birth and age 25)

At Age 14 I liked Girls and Guys, But due to gay discrimination and the society not acceptive of it, I hid it for years until about Age 28 and only dated women. I have heard on here that guys with XXY are Straight, Bisexual or Gay. I would consider myself Bisexual. I been with a few guys but never gone all the way. I been with more women then men. I am also Catholic. My religion also plays a factor since catholic church is against gay relationships. One day, I left a message on my bed and told my father that I was spending a night with a guy (Yes, I am Gay), So I opened up to him by message, He confronted me within a few days, he was ok with it as long as I don't bring anyone over and he told me about the dangers of Aids. 

I moved out of my parents home at the age of 44 (2014) and moved in a few places until I moved into a Section 8 (Government Housing) in 2017. I have met many women thru-out the years most relationships would last 6 months to 1 year as I would get bored with them (I probably was looking for a reason to break-up with them). I dated one woman on and off for 10 years. She had similar mental disabilities as me however when I proposed to her at first she said yes, But when it came time for reality to set in and look for a place to live together, She would rather like Single Life. We are still friends but see other people. I graduated in 1988 with a Diploma in General Studies and attended Community College in Criminal Justice and Business. I had a seizure which ended my chances to become a law enforcement officer. I had odd jobs since. I been a member of a Clubhouse for 10 years.

What is a Clubhouse - A Clubhouse is a community intentionally organized to support individuals living with the effects of mental illness. Through participation in a Clubhouse people are given the opportunities to rejoin the worlds of friendships, family, important work, employment, education, and to access the services and supports they may individually need.

I have 3 Older Sisters and 1 Older Brother, 1 Younger Brother. My Mother had 2 Stillbirths prior to having us. 

My mother told me my older brother had same condition I had (Man boobs) he had cosmetic surgery to remove that in the 1970's. He was able to have children 2 boys and 1 girl. (none seem to have any disabilities)

If anyone wants to respond to my message, just click "Reply to BigBoyMichigan" 

 

Before I was diagnosed in 1997 with 47 xxy intersex,  I was weak, couldn’t build muscle mass, small penis n testicles, shy, emotional, sensitive, bad memory, learning difficulties, enlarged breasts, etc. Once diagnosed, started T hrt patches & began feeling 100% better. Now after 21 years of taking T my body can no longer accept T & in process of going on estrogen!

My husband  and I are 63...we married at age 18 and 2 years after found out he has Klinfelters. We of course were never able to have children biologically, but have raised 5 adopted children. I know that growing up and puberty was difficult as a young man..but I do not think that is exclusive to Klinefelters Syndrome. Growing up can just be hard...period. I think getting the diagnosis really rocked his world. At that time they were reporting that Klinfelters Men were antisocial and a large percentage ended up in prison, and had lower IQs. 

So how is life at 63 with an XXY guy? We are both Christians and trust God....so that covers so much! Life will always be so imperfect and we certainly go to God for strength.

My husband has always had that "protector provider" towards me...and I consider him a masculine man...not feminine at all. 

My husband is tall and yes, he is over weight (But hooray! he has lost 40 pounds!). It is a continuing struggle...as it is for about 40% of Americans without Klinefelters. 

Treatment? through the years off and on, from time to time he was on Testosterone. We discontinued that some time ago due to the heart attack risk.

We remain sexually active with one another. 

I just had to post....so many posts that I read are all doom and gloom. 

You can live and live well with Klinefelters...get past the diagnosis and begin living!

HELLO FOLKS . since i was on here last i have under gone many tests due to things the govt medical for 60 yr olds [ which was later due to inept doctor ]. i was found to have extremely high level of iron 2000ppm and this triggered many tests. i told the new doctor that i was XXY so that brought up more tests and a full body scan to see what i had inside me. they found full female anatomy , woumb and ovaries. then they continued to find that i had the full female anatomy and but for doctors sewing me up as baby i had vagina and all . then they went further to find retained testicles above my penis.  blood tests confirm that i am 80% female levels. going back on medical records it appears that i was having bad back cramps on regular basis which was put down to having had broken back . now the specialist thinks i could have possibly been having periods.  so now more unanswered questions than answers. 

 

I was diagnosed in 1997 with XXY & been taking T up till now, I’m 50yrs old & will be switching to estrogen by December. It’s been long n difficult road! But last year I found out that I’m Intersex as well, how about you?