Life expectancy of medically transitioned young people

[porridgecake]

I am sure I read on here that children and young people who start puberty blockers and then continue on cross sex hormones long term have a greatly reduced life expectancy.
Does anyone have any information on this?

I'm not trans, but I've had extensive surgery related to Crohn's disease and endometriosis. I would imagine "bottom surgery" puts the patient at risk of both urinary and fecal incontinence, fistulas, nerve damage and sexual dysfunction. Given my experience with surgeries in this area, I would beg a trans person to think very hard before they decide to make these kinds of changes.

PrincessNutella's post : 'Proper informed consent for Lupron therapy is impossible to obtain because the occurrence of ovarian dysfunction long after stopping Lupron remains hidden behind a court protective order'. Cited from a paper (Redwine et al)

There's a court protective order somewhere (US?) preventing us knowing about the effects of Lupron on ovarian function. WTF??? You can bet what's in there is not good.

I know of a 22yo, was at school with dd, who is in a very bad way. FtM, in a wheelchair, heaven knows what else wrong, heart problems and less obvious things which I don't understand, stuff like imbalances in the endocrine system (hardly a surprise, surely) and so on. When younger, she was quite a nice girl, these days he is not so much, and rapdily becoming friendless which serious as he went nc with his family as soon as he could. It's incredibly sad.

Reading this, it looks very likely that these children are likely to die before their parents. What an absolutely horrific prospect.

@porridgecake

Reading this, it looks very likely that these children are likely to die before their parents. What an absolutely horrific prospect.

Horrifically ironic when parents have been terrorised into compliance and support for transition by the threat, "Do you want a dead daughter/son or a living son/daughter?"

Transition is, according to the evidence, far more likely to result in the early death of their child.

This is such a great thread. Sad, but important.

It's a self fulfilling prophecy isn't it. Claims that tran people die young and need to medically transition, so they have treatment and die young. And suddenly there is something to actually back up that stat.

Except that they are dying AFTER the transition, not before. Which wasn't what they had been told, at all...

I've been watching the youtubes of TTExculansic, lots of horror stories there, and realistic commentating on the unrealistic expectations of these young people.
www.youtube.com/channel/UCuWbt6ZGY8wIJs_RlnuO0zA

Another thought - most of us on this board are supremely positioned to talk about the pain and possible complications of both major and minor surgery in the bottom area!!

Because - we are all women, and the majority of women have had/will have children. And the complications of childbirth are frequent, and messy. We could tell any of these confused children about urinary infections, incontinence, drug dependence for the pain, and then all the surgical complications.

We know.

But they go for advice to men online who would cry at a nosebleed.

It's so sad.

Very true @oldwomanwhoruns

I've been watching Exulansic video's too, seeing these young people proudly discussing their multiple surgeries, the post op complications, the infections, the pulmonary embolus, the supra-pubic catheters and leg bags.

I'm feeling really angry.

This last couple of weeks at work we have had several beautiful, previously fit and well, young (by my definition - 50's, 40's, 30's - too young to die) people through the department with devastating new cancer diagnosis. All with young children and so much to live for.
I've been fighting tears on a couple of occasions. I feel so sad for them and their families.

Life is precious, good health is the greatest blessing, to be treasured and enjoyed. It can all be lost in a flash. None of us knows what is just around the corner.

These teenagers should be making the most of their healthy bodies, having fun, pursuing education, sport, jobs. Instead they are chronic invalids, with a busy schedule of hospital appointments, hand physiotherapy appointments, catheter bag changes, infections, revision surgeries. Their health ruined for life. It's like some extreme competitive self harm club that they are encouraging each other to join. They will never enjoy good health again.
It is the medical scandal of our age.

I reckon it'll be another ten years yet, maybe twenty, before this generation of lost youth wakes up to what has been done to them.
If there is a collective cry will there be a mass class action? Who will they sue? Doctors? Insurance companies? Politicians?
They'll still never get their lives back.

When I first started finding out about all this in the run up to the GRA in 2018 I couldn't believe this was being done to young people.
I still find it hard to believe. It's scandalous.

Can anyone help me with any figures of how many young people in the UK who are damaging their bodies in this way, ie surgery or hormones, whatever? Because I am going to have a chat with my MP, and some hard facts would help me to get my point across

Not enough time has passed. But its not exactly rocket science to say its highly likely they have shortened life spans due to knowledge in areas using the drugs they are and the impact it has. The comorbity issue is also present and we do have data in that department.

@oldwomanwhoruns

Can anyone help me with any figures of how many young people in the UK who are damaging their bodies in this way, ie surgery or hormones, whatever? Because I am going to have a chat with my MP, and some hard facts would help me to get my point across

It’s hard to know the numbers. This article

www.bbc.com/news/health-49036145

states

Gids' data suggests that between 2012 and 2018, 267 people under the age of 15 started using the blockers.

We know that 98+% of children who start PBs go onto wrong sex hormones. If you add in children since 2018 and before the Bell ruling then it’s likely 300 children. But those who started in 2012 will only just be young adults, and no one is following them up properly. So you could say to your MP that there are at least 300 children who have been committed to a medical pathway which NICE this determined has very low evidence in its support. Yes

Thx notbadconsidering.

I've just had a look on gofundme - and searched on 'top surgery uk'. It doesn't seem to give a number, but brings up pages of 18 per page. It's a lot. I'll report back the actual number.

GIDS seem a bit reluctant to release information about the number of children referred for treatment with hormone blockers.

tavistockandportman.nhs.uk/documents/1873/FOI_19-20328_GIDS_Hormone_Blockers_Prescribed_2018-19_and_19-20.pdf

The response says:

Whilst I confirm that the Trust holds information falling within this scope, the dates on which hormone treatment was prescribed and commenced are not held for all patients.

The Tavistock and Portman NHS FT does not prescribe puberty blockers or any other medication linked to the treatment of young people presenting to GIDS. This is the domain of endocrinologists who are employed by other NHS Trusts. There are a number of arrangements for prescription of the blockers which are most often administered locally, and we therefore may not have the date on which hormone treatment commenced for all patients

They're really believe in throwing the endocrinologists under the bus. Should we be fine FOI requests from them? I assume they have been assured that all psychological matters have been dealt with and that they are involved only in the physical medical elements.

I'm becoming very concerned by the casual attitude to cross-sex hormones.

This is a post from a female who identifies as non-binary, who claims to be taking supplemental testosterone in order to grow a moustache.

This is a hormone that may affect the functioning of all your organs, being taken for the sake of one cosmetic side-effect.

Sadly, I just don't think there's enough data on this yet to make any medical decisions.

@PurgatoryOfPotholes

I'm becoming very concerned by the casual attitude to cross-sex hormones.

This is a post from a female who identifies as non-binary, who claims to be taking supplemental testosterone in order to grow a moustache.

This is a hormone that may affect the functioning of all your organs, being taken for the sake of one cosmetic side-effect.

Rebelling against the Tyranny of Tweezers by taking Testosterone to grow a 'tache.

This cynical, destructive commodification of perfectly normal teenage angst about body image by the Medical-Industrial Complex via influence on the media is the scandal of our age.

And via gaming? I was wondering about all the "anime avatar" TRAs. Are Anime and Gaming "Terrible Twins"?

Globally, gaming is bigger commercially than the Music Industry and the Movie Industry combined.

UK Gaming Demographics:

www.statista.com/statistics/300513/gaming-by-demographic-group-uk/

"‘In the game, I knew myself as Hannah’: the trans gamers finding freedom on Roblox"
The Guardian, 24 April 2021

www.theguardian.com/games/2021/apr/24/in-the-game-i-knew-myself-as-hannah-the-trans-gamers-finding-freedom-on-roblox

www.zeit.de/sport/2018-03/doping-ddr-sport-dopingopfer-kinder-folgen-hilfe-english

Presumably including both men and women, East German anabolic steroid victims die on average 10 to 12 years earlier and are at a 2.7-times greater risk of falling seriously ill than the general population.

A woman who was doped as a teenager reports the horrific effects she has suffered since:

Myocarditis with enlarged left ventricle and inflamed interventricular septum
Enlarged heart
Heart arrhythmia
High blood pressure
Thrombosis and pulmonary embolism
Liver damage
Impaired coagulation
Arthritis in the spine, hips, shoulder, ankle and thumb joint
Ganglion cyst on the right ankle
Dyslipidemia
Varicose veins from chronic venous insufficiency
Hypothyroidism with nodules
Several benign tumors and cysts
Obesity
Anxiety and panic disorder
Burn-out, chronic fatigue and depression
Eating disorder
Virilization: facial hair growth, male-pattern pubic hair growth, elevated testosterone levels
Underdeveloped ovaries and uterus
Pain medication intolerance
Insulin resistance

She is only 44. Her 11 year old daughter is also chronically ill. Miscarriages and birth defects were reported by East German victims even when they had stopped the anabolic steroids years previously. archive.nytimes.com/www.nytimes.com/library/sports/other/020600swim-germany.html

The implications for detransitioners is very worrying. Women being given anabolic steroids since their teens for their whole lives would be even more severely affected.

Single datapoint: Late thirties trans woman here, transitioned in teens at turn of the century via GIDS, doing pretty well so far!

MH better than majority of peer group, and has been since transition even despite everpresent minority stress etc. Moving to another part of the country at start of university significantly helped there - a complete clean break avoided the hangover abuse from having transitioned at school in a world that was then extremely hostile to trans people.

Physical health largely pretty good. Wear and tear from highly active hobbies has, as expected on approach to 40's, started to have a noticeable effect. ECG results from a few months ago were commented on as extremely positive by GP.

There may be hidden horrors lurking ahead - hormone therapy does come with increased risks etc, even after switching to patches. It's important to be realistic about such things!

All told though, I'm about as healthy as if not healthier than most of my peers and don't seem to be suffering any transition-specific issues. All frightfully boring and ordinary, really.

@CheeseMmmm

'bottom' surgery must be absolutely horrific. And the risks? Results, how good?

The other thing is scar tissue is not normal skin. On surface it's so itchy healing. The surgical scars are red and very obvious for a long time. Mine took maybe 15 years to fade. They're quite a nice shiny silvery look now (imo!) but anyone who notices them flinches. They're long. They are still noticed even though they 30+ years old now.

And inside it took about 5 years to fully heal. To be totally no pain if pressed hardish. Plus things like adhesions. And a if need to cut same place it heals worse each time and the area without normal function grows.

And this is groin. Mtf it's grossly invasive.

To underplay any of this is really upsetting to me personally.

Me too.

The “underplaying” starts with the language itself: top surgery / bottom surgery. Sounds innocuous, but the real, medical terminology should be used: mastectomy, etc.

@TheCountessofFitzdotterel

‘The middle aged males will be fine and dandy though because they had their testosterone fueled puberty and weren't made sterile.’

No the middle aged men are not fine and dandy. They have an increased risk of heart attack and stroke if they are on artificial hormones.

A transwoman friend of mine- healthy, around 40s, no obvious other causes- died of a sudden heart attack last year.

Most will be fine though as most of the middle aged males don't have any surgical or pharmaceutical interventions.

Glad to hear you're doing well, ButterflyHatched.

@ButterflyHatched

Single datapoint: Late thirties trans woman here, transitioned in teens at turn of the century via GIDS, doing pretty well so far!

MH better than majority of peer group, and has been since transition even despite everpresent minority stress etc. Moving to another part of the country at start of university significantly helped there - a complete clean break avoided the hangover abuse from having transitioned at school in a world that was then extremely hostile to trans people.

Physical health largely pretty good. Wear and tear from highly active hobbies has, as expected on approach to 40's, started to have a noticeable effect. ECG results from a few months ago were commented on as extremely positive by GP.

There may be hidden horrors lurking ahead - hormone therapy does come with increased risks etc, even after switching to patches. It's important to be realistic about such things!

All told though, I'm about as healthy as if not healthier than most of my peers and don't seem to be suffering any transition-specific issues. All frightfully boring and ordinary, really.

You outlined on a previous thread that you started puberty blockers at 15, and it became evident in that thread that you’ve had more issues than you have mentioned in your post today:

www.mumsnet.com/Talk/womens_rights/a4350998-the-judgment-in-keira-bell-s-case-will-be-given-tomorrow?msgid=110962941#110962941

There’s no point rehashing that thread, but it was pointed out to you that your experience is not comparable at all to these children in Sweden, even if you have the sensibility to point out that you’re a single data point.