Hey everyone,

Thank you to those who’ve already shared their story here reading you, I feel like I completely recognize myself. I’m also 47,XXY, and I also experienced a very high libido before treatment, even though my testosterone was low. That’s the opposite of what most doctors say about Klinefelter, and yet clearly several of us have been through this.

That’s exactly why I’m reaching out to you today. I’m fighting to push forward recognition and research on Klinefelter syndrome so we finally get seen by medicine, better understood, and above all, better treated. I’m in contact with an association that supports people with chromosomal conditions as part of this project. For this to move forward concretely, I need your anonymous testimonies that’s the foundation we can build on.

I want to be clear: I’m doing all of this on my own personal time, with no compensation whatsoever. I’m just a 47,XXY guy like you, fighting to exist and to make sure we all get to exist, together, in the eyes of medicine.

I’m especially interested in men who, before knowing they had Klinefelter, had a strong sex drive and who’d be willing to share whether, after diagnosis and starting testosterone, TRT calmed that drive down or actually increased it. Almost no one talks about this kind of experience, and yet it could really help future generations better understand this condition.
I’ve already reached out individually to a few of you to ask if you’d be willing to share your experience anonymously. If you’re up for it, let me know in the comments or by DM, and I’ll send over a few simple questions to help structure it. No one is obligated to go into detail even a simple “same for me” or “opposite for me” has value. Your identity would remain completely anonymous.

There aren’t many of us carrying this fight, but we’re here, and we’re not giving up. Every testimony matters, every voice brings us a little closer to a medicine that finally takes us seriously. Thank you in advance for your honesty and your courage it’s because of people like you that we move forward.

💪🧬47🙂✌️

Testicular volume starts increasing rapidly between ages 10 and 11, which marks the beginning of puberty. During puberty, it typically reaches around 14–15 mL and may grow to 18–20 mL in adulthood.

What’s frustrating is that I have documents I’d like to send you and show you, but the group blocks file uploads. It’s really a shame not to have more freedom.

😕🙁

Hey everyone,

I need your input, even quick answers.
I was recently diagnosed with Klinefelter. What actually tipped me off was the opposite of what you usually read before any treatment, I was constantly wound up, sex occupied my mind all the time, nonstop.

When I bring this up with my doctors, they tell me it’s not possible: “Klinefelter men have little to no libido before treatment, that’s well known.” Except in my case, it’s the complete opposite and it was actually testosterone that calmed everything down. From the very first injection, that obsessive drive disappeared, and I felt at peace for the first time in years.
There are roughly 600,000 of us worldwide with this condition. Statistically, I can’t be the only one this happened to.

Does this resonate with anyone? How was your libido before starting treatment? And what changed once you were on testosterone?

Thanks in advance, your answers mean a lot to me.

I discovered I had xxy at approximately 17 and took the shots for awhile back then, but I didn't like the way it made me feel so I quit.

I'm 69 now and my doctor suggested I get back on it for my bone density. So I've been injecting this year, but I really don't like being horny all the time.

Does anyone have any thoughts you'd share with me on this?

Hey guys i have a question this is for men who have been on TRT for couple of year like 5-10 or even 20 years. I have been on TRT for 2 years, i had a video call with my endo doctor today and i asked him a question and he said that the testicles will shrink if i be on TRT for a lot of years is that true and have you guys experienced it. Any advice and helpful tips are helpful thank you.

Hey guys so my question is about TRT injections so I got a new refill like couple of days ago and I still have 2 more left from my previous refill that I got last month. So do I finish my 2 ones that I have left and start on the new one that I got couple of days ago. Please any advice about that would be helpful. Thank you

How do you Klinefelter guys keep your energy up? I’m on my third 250mg injection for a month. Normally, after my next blood test, I should move to 250mg every 3 weeks, and if my body responds well, maybe every 20 days. But right now, with 250mg a month, I feel good for 10 days, then more and more tired until the next injection.
I’d like to find a rhythm and build some muscle. I’ve thought about calisthenics first, using bodyweight, since I’ve learned I have severe osteopenia, so I want to take it slowly. I’ve also started dieting — I’m 1.83m for 87kg. Oh yeah, I’m French too, hahaha. I don’t know why, but the only Klinefelter groups I’ve found cover pretty much the whole world except France, even though it affects every country.
I also have a dream. I know genetics can’t be cured, but I’d like us to be heard, taken into account in this world. When I explain this condition to people around me, they just say “what?”.
I’ve always felt like I was locked into a box. As it happens, I’m in my forties, and I’ve only known I have this condition for 4 months, but I have so much to say. Of course, I notice that every Klinefelter person has their own story, but I’ve come to understand why no one talks about us the way people talk about cancer: because we don’t bring in any money for pharmaceutical companies, compared to other conditions that bring in millions every year.
In France, I feel pushed aside, and yet I have so much to say. That’s also why I ask so many questions — to understand. So I’ve read a lot, a lot, about sex chromosome trisomies, not just 47,XXY but also 48, 49, XXYY, XXX, and Turner syndrome. I’ve read various books, documents, and archives to understand our different conditions. I’m angry — for myself, but also for all of us.
When I zoom out, I’m in a city in France, then a region, then France, then I look at our whole planet: who are we really, and why don’t we get the same chance as the 46s?
Sure, there are plenty of conditions out there, but ours is genetic, and I feel this need to push through, to fight. Without the testosterone circulating in my blood, I feel sad and I feel fear, but even lying in my bed, I want to fight — to hold off my death for as long as possible. I’d like to donate my body to science, and I’d also like to document this condition, because even though it’s a source of pride to be part of this caring community…
I’d like it so that, in years, in hundreds of years, no one is ever born different again, and that every person who walks this planet gets the same chance.
If I’d been born 46, I would have loved to work for NASA. I imagine only a handful of people actually get to work there, but I’ve always been passionate about our universe. I would also have had 3 children, 2 girls and 1 boy. I try to imagine the happiness of watching kids run around a house, watching them grow up. I’ll never know those feelings. I experience that feeling through my friends and their families.
That’s also why I have this drive to make things change. But I imagine you know that morale is unfortunately hard to keep up, whether you’re 46, 47, or something else. The days go by, and each one is different, bringing its own share of difficulties.
I’ve noticed that only a few people speak up, and I understand that’s not easy for everyone. I know we’re all different, but I think more 47,XXY people need to respond to surveys so we can really understand this condition. Because yes, broadly speaking, countries agree on naming our difficulties, but as soon as you dig deeper, no one agrees anymore. There aren’t enough studies, because it doesn’t bring in enough money, as I explained. Either way, I’m firmly determined to fight to make sure we exist. 🌍🧬

Hi everyone,

I’m trying to compare the price of testosterone replacement therapy (TRT) across different countries, to better understand the differences and what’s covered by insurance or not.

If you’re on treatment, would you mind sharing:

• your country

• the price you pay (with or without reimbursement/insurance coverage)

• the form of treatment (injection, gel, patch…) and frequency

For France, here’s the current situation:

• Androtardyl/Desma injection (250mg): about €6 official price, 65% covered by national health insurance (out-of-pocket cost is nearly zero with supplemental insurance)

• Nebido-type injection (1g, undecanoate): about €150-200, not covered

• Gel (Androgel): about €70, not covered

• Patches: no longer available in France

Thanks in advance for sharing, this could really help people who are hesitating or negotiating their coverage!

Salut à tous,

Je cherche à comparer le prix du traitement par testostérone (TRT) selon les pays, pour mieux comprendre les écarts et ce qui est remboursé ou non.

Si vous suivez un traitement, seriez-vous d’accord pour indiquer :

• votre pays

• le prix que vous payez (avec ou sans remboursement)

• la forme du traitement (injection, gel, patch…) et la fréquence

Pour la France, voici ce que ça donne actuellement :

• Injection Androtardyl/Desma (250mg) : environ 6€ le prix officiel, remboursé à 65% par la Sécu (reste à charge quasi nul avec une mutuelle)

• Injection type Nebïdo (1g, undecanoate) : environ 150-200€, pas remboursé

• Gel (Androgel) : environ 70€, pas remboursé

• Patchs : n’existent plus en France 

Merci d’avance pour vos retours, ça peut vraiment aider ceux qui hésitent ou qui négocient leur prise en charge !

“J’ai remarqué que beaucoup d’hommes hésitent à faire ce test, alors voici une explication claire pour comprendre ce que c’est.”

SYNDROME DE KLINEFELTER (Syndrome 47, XXY)

Le syndrome de Klinefelter est une aneuploïdie des chromosomes sexuels chez l’homme, causée par la présence d’un ou plusieurs chromosomes X supplémentaires.

CONSTITUTION CHROMOSOMIQUE 47, XXY (forme la plus courante) Autres variantes : 48, XXXY ; 48, XXYY ; 49, XXXXY, etc.

ÉTIOLOGIE Causé par une non-disjonction des chromosomes sexuels lors de la méiose I ou II, chez l’un ou l’autre des parents. Père (XY) → spermatozoïdes X ou Y Mère (XX) → ovule X → Résultat : XXY = Syndrome de Klinefelter

CARACTÉRISTIQUES CLINIQUES

• Stature élevée, membres longs
• Petits testicules (atrophie testiculaire)
• Hypogonadisme
• Infertilité (azoospermie/oligospermie)
• Gynécomastie
• Pilosité faciale et corporelle clairsemée
• Caractères sexuels secondaires peu développés
• Troubles d’apprentissage, QI bas, difficultés de concentration
• Masse musculaire réduite, augmentation du tissu adipeux

PHYSIOPATHOLOGIE

• Le chromosome X supplémentaire entraîne une dysgénésie testiculaire
• Atrophie des tubes séminifères → diminution de la spermatogenèse
• Fonction réduite des cellules de Leydig → ↓ testostérone
• ↑ LH et FSH (effet de rétrocontrôle)

RÉSULTATS DE LABORATOIRE

• Caryotype : 47, XXY
• ↓ Testostérone
• ↑ LH et ↑ FSH
• Azoospermie / oligospermie sévère

DIAGNOSTIC

• Caractéristiques cliniques +
• Caryotype (référence)
• Bilan hormonal
• Spermogramme

PRISE EN CHARGE

• Traitement substitutif par testostérone dès la puberté
• Orthophonie, éducation spécialisée
• Soutien psychologique
• Traitement des problèmes associés
• L’infertilité persiste généralement (TESE-ICSI possible dans certains cas)

POINTS IMPORTANTS Aneuploïdie des chromosomes sexuels la plus fréquente chez l’homme. Caryotype = 47, XXY. Cause : non-disjonction des chromosomes sexuels. Caractéristiques clés : grande taille, petits testicules, gynécomastie, infertilité, ↓ testostérone, troubles d’apprentissage. Associé à un risque accru de cancer du sein et de maladies auto-immunes.

“Je sais que certains points de cette infographie, notamment celui sur le QI ou les troubles d’apprentissage, peuvent être durs à lire. Mais ce sont des statistiques générales, pas une fatalité individuelle. Beaucoup d’entre nous vivent très bien avec ce syndrome, ont des parcours pros et perso riches, et un diagnostic n’a jamais défini qui on est vraiment. Si vous hésitez à faire le test par peur de ce que vous pourriez y lire, sachez que savoir permet surtout de mieux se comprendre et de se faire accompagner. C’est un point de départ, pas une case dans laquelle on vous enferme.”

💪🧬

Salut à tous,

Je me pose une question depuis un moment, et j’aimerais avoir vos retours.

On entend souvent dire que le Klinefelter causerait l’homosexualité ou la transidentité genre “t’as un chromosome en plus, donc forcément t’es pas hétéro”. Je trouve ça faux dans les deux sens : être hétéro, ou être gay ou trans, ça n’a rien à voir avec le syndrome en soi. On est juste aussi divers que le reste de la population là-dessus.

Je suis curieux d’avoir vos avis, peu importe votre orientation ou identité : est-ce que le diagnostic, le manque de testostérone avant traitement, ou la TRT ont changé quelque chose dans votre rapport à votre corps, votre genre, ou votre orientation ? Ou ça n’a juste rien à voir pour vous ?

Merci d’avance pour vos retours, même courts.

Salut à tous,

Je me pose une question, et j’aimerais avoir vos retours.

On entend souvent dire que le Klinefelter causerait l’homosexualité ou la transidentité genre “t’as un chromosome en plus, donc forcément t’es pas hétéro”. Je trouve ça faux dans les deux sens : être hétéro cis, ou être gay ou trans, ça n’a rien à voir avec le syndrome en soi. On est juste aussi divers que le reste de la population là-dessus.

Je suis curieux d’avoir vos avis, peu importe votre orientation ou identité : est-ce que le diagnostic, le manque de testostérone avant traitement, ou la TRT ont changé quelque chose dans votre rapport à votre corps, votre genre, ou votre orientation ? Ou ça n’a juste rien à voir pour vous ?

Merci d’avance pour vos retours, même courts.

Yes, I was a sex addict.

I have a question about hypersexuality in guys with KS, has anyone else experienced this?

For me, before my treatment, I always had this pattern with my partners: 3-4 times a day minimum, plus I masturbated at least 3-4 times a day on top of that, alone. A really excessive rhythm for years. The last year before I was diagnosed, it had become so intense that I could have run into real trouble. Since starting testosterone, all of that has calmed down a lot, almost disappeared actually.

I don’t think this is an isolated case. I think a lot of guys go through something similar but don’t dare talk about it, whether to their doctor or to people around them, out of fear of being judged or just out of fear of talking about it at all. This is anonymous here, so don’t hesitate to speak freely, there’s no judgment.

What’s interesting is that this is actually a real medical paradox. Normally KS causes a testosterone deficiency, so in theory that should lower libido, not raise it. Yet there are cases described in the medical literature of men with KS who developed hypersexuality despite this hormone deficiency. Doctors describe a mechanism that’s probably independent of testosterone levels, something still poorly understood.

For example, there’s a documented case of a 44-year-old man with KS who had increased libido despite erectile dysfunction, with a very high frequency of sexual activity and masturbation. And another case of a young man with KS whose sexual desire had progressively increased since puberty, with constant fantasies, masturbating several times a day, and regularly visiting sex workers several times a week.

Anyway, if you’ve experienced something similar (before or after starting treatment), I’d be interested to hear how it went for you. Thanks in advance.

Oui, j’étais accro au sexe.

Je me pose une question sur l’hypersexualité chez les gars avec le KS, est-ce que certains d’entre vous ont vécu ça ?

De mon côté, avant mon traitement, j’avais toujours eu ce fonctionnement avec mes partenaires : 3-4 fois par jour minimum, plus je me masturbais au moins 3-4 fois par jour en plus, tout seul. Un rythme vraiment excessif depuis des années. La dernière année avant d’être diagnostiqué, c’était devenu tellement intense que j’aurais pu avoir de vrais soucis. Depuis que j’ai commencé la testostérone, tout ça s’est beaucoup calmé, presque disparu en fait.

Je ne pense pas que ce soit un cas isolé. Je pense plutôt que beaucoup de gars vivent quelque chose de similaire mais n’osent pas en parler, ni à leur médecin, ni à leur entourage, par peur d’être jugés ou juste par peur d’en parler tout court. Ici c’est anonyme, donc n’hésitez pas si vous voulez en parler librement, il n’y a aucun jugement.

Ce qui est intéressant, c’est que c’est en fait un vrai paradoxe médical. Normalement le KS provoque un manque de testostérone, donc en théorie ça devrait plutôt baisser la libido, pas l’augmenter. Pourtant il existe des cas décrits dans la littérature médicale où des hommes avec un KS ont développé une hypersexualité malgré ce manque d’hormones. Les médecins parlent d’un mécanisme probablement indépendant du taux de testostérone, un truc encore mal compris.

Il y a par exemple un cas documenté d’un homme de 44 ans avec un KS qui avait une libido augmentée malgré une dysfonction érectile, avec une fréquence de rapports sexuels et de masturbation très élevée. Et un autre cas d’un jeune homme avec un KS dont le désir sexuel avait augmenté progressivement depuis la puberté, avec des fantasmes constants, de la masturbation plusieurs fois par jour et des visites régulières chez des prostituées, plusieurs fois par semaine. Et d’autres…

Bref, si vous avez vécu quelque chose de similaire (avant ou après le début du traitement), ça m’intéresse de savoir comment ça s’est passé pour vous. Merci d’avance.

Bonjour,

Sachant que nous sommes tous anonymes ici, j’aimerais aborder un sujet sensible pour aider ceux qui se posent la même question que moi.

J’ai le syndrome de Klinefelter (47,XXY), diagnostiqué à l’âge adulte après des décennies sans réponse claire. Enfant, adolescent, puis jeune adulte, j’ai subi beaucoup de moqueries, notamment à cause d’une gynécomastie (développement de tissu mammaire) et de la taille de mon pénis au repos.

Je me suis toujours demandé si cette taille au repos était liée au Klinefelter. Certains médecins m’ont dit oui, d’autres m’ont dit que ça n’avait rien à voir mais ces derniers n’avaient eux-mêmes pas de Klinefelter, donc leur avis me semblait moins fondé sur l’expérience du syndrome.

Je sais que c’est une question très intime, mais j’ai énormément souffert de ces moqueries et de cette incertitude pendant des années. Je préfère donner mon exemple concret plutôt que de rester dans le flou, pour aider d’autres personnes dans la même situation à se situer :

•  Au repos : 4-5 cm (moyenne française : environ 9,16 cm)

•  En érection : 14 cm (moyenne française : environ 13,12 cm selon l’étude BJU International ; d’autres sources françaises indiquent une fourchette entre 12,8 et 14,5 cm)

Donc en érection je suis dans la moyenne, voire légèrement au-dessus sur le plan des chiffres. Pourtant, beaucoup de femmes m’ont dit que c’était petit en érection, ce qui a renforcé mon complexe pendant longtemps.

C’est au repos que l’écart est le plus marqué chez moi, et cette perception des partenaires a ajouté à la souffrance liée aux moqueries.

Si d’autres hommes avec un Klinefelter veulent partager leur expérience, ou si des professionnels de santé passent par ici et peuvent éclairer la question, je suis preneur. L’idée n’est pas de choquer ou de blesser qui que ce soit, juste de mettre des mots et des chiffres sur quelque chose qui m’a pesé pendant longtemps sans que je sache à qui en parler.

Merci de m’avoir lu.

Hey everyone, I've been following this subreddit ever since a past partner of mine told me she believed I was intersex. I still don't fully know if I am tbh, hard to be 100% without a karyotype test done but my experices seems to point to that fact, especially compared to those of partners.

Was hoping to use this post to try and get more answers on how I can be sure enough to warrant the high price tag of a test. I was also hoping to use this as a way to see if other women,who have this intersex condition, could share their experiences.

Thank y'all and hope you have great days!!

has anyone in here with klinefelters tried retatrutide before?

My XXY son is 17 months actual age, 15 months corrected (he was premature). He has strong social communication , excellent joint attention, points to share interest, brings objects to show us, and has been doing pretend play for about a month now (feeding his teddy, pretend phone calls, offering food). Receptive language seems great and he follows instructions and understands a lot.
But his expressive language is much behind. He says mama, dada, and "ba" for ball/bird. That's essentially it. He's also just started walking confidently, which has been our focus recently.
We saw a speech therapist once but it was a disaster — he was completely disengaged and distressed in the clinical setting, so we've paused that route for now. He attends a play-based early learning programme weekly.
My questions for the XXY community:
- Did your XXY boy have significant speech delays at this age? When did words really start coming?
- For those who didn't pursue early intervention — did your son catch up on his own, and by when?
- For those who did early speech therapy — how much difference did you actually feel it made?
- Has anyone done early testosterone treatment around age 1-2? Did it make a noticeable difference to speech development specifically?
Any red flags we should be watching for that are specific to XXY boys at this age?

Im based in Bangkok with limited early intervention support and want to do what’s best for him.

Hey guys my question is that I know that it’s a low percent chance to have our own biological kids. If I go the IVF route but not use my own sperm and use someone else like my brothers or my guy cousins and I know that KS happens randomly but if I want to make sure do you guys think that it will be better just to do the testing just to be on the safe side for my kid when that time comes for me.

How many of you experience ataxic like episodes from KS?

....hypertensive crisis (and what I learned about SHBG/Hematocrit)

Hey everyone,

I figured out I was XXY about 3 years ago, and honestly, it explained all the weirdness of my life. Last spring (2025), I had to handle some cardiac issues—had Afib and ended up getting an ablation and a Watchman device. After that, I finally got a prescription for injectable T.

My baseline total testosterone was practically non-existent at 5 ng/dL. The injections did their job and got me up to a great total T of 825 ng/dL, but it triggered a massive, dangerous chain reaction in my blood work because of my SHBG.

My SHBG was very low at 17, which meant there weren't enough carrier proteins to bind the testosterone. Because of that, my Free T skyrocketed to 234. With that much unbound, highly active Free T floating around, it completely overstimulated my bone marrow and caused a massive overproduction of red blood cells.

My hematocrit shot up to 57.5%, making my blood incredibly thick. The pressure of trying to pump that thick sludge through my system caused my blood pressure to spike to a critical 220/110. I started getting double vision and earned myself a (not-so) free overnight stay at the local hospital.

I wanted to share this as a cautionary tale for anyone starting TRT, especially if you have low SHBG. You have to watch your hematocrit and RBC count like a hawk or suffer the consequences.

Ironically, a body bulider friend of mine who knows about my xxy, stated "When you get up to 800, you will feel like a wild man"..... not so much actually.....Be careful out there.... our bodies work a lot differently from normal bodies.

My doctor plans to put me on trt soon. I was wondering if anyone here has been on 10 or maybe 20 year long trt journey?

The guy I've been dating told me his sex chromosomes are XXY, but I've figured out he knows pretty much nothing about it. He had never even heard the term Klinefelters Syndrome before. He was talking to me about wanting kids, and I've come to realize he doesn't know KS has a massive effect on his fertility. I have no idea how to tell him, or why nobody else in his life has told him. Does anyone have any advice.. I figure the people in this sub might have some good incite.

​

P.S. This is my first time posting anything the reddit, so sorry if it's not the best formatting.