Work endometriosis talk

FFS. I couldn’t sit through this. Are you going to speak out? All your colleagues will silently thank you.

Presumably the reason they've put on the talk is that endometriosis (in women) is sadly very common. Endometriosis in men however is vanishingly rare (ten million times less common than in women, according to the above statistics). I don't imagine they're having many talks on conditions only known to affect less than twenty people - what would be the point?

Leaving aside the vanishingly rare men, the coleague who has taken the web site and changed 'woman' to 'people' has plagarised.

If you are nto waking in academia it might not be an issue but it isn't good practice.

I'm so glad I don't work at your place of work, I don't think I'd be able to hold back. After having endo for my whole adult life, a lot of IVF, and now endo with menopause, they'd be told to F off, F off some more, and when they get there, get to F. GRRRRR!

Men cannot ‘suffer from it’. Because they do not have a uterus. They may have something that causes similar symptoms, but it ain’t endo.

Endometriosis occurs outside the uterus. You don't need a uterus to have it, and it can persist after a hysterectomy. You do, however, need endometrial tissue, which men do not have, except in incredibly rare and anomalous situations.

@MadamePickle puts it perfectly. The whole question of whether men can get it is a total distraction.

Men cannot ‘suffer from it’. Because they do not have a uterus. They may have something that causes similar symptoms, but it ain’t endo.
The allegation that 20 men have been diagnosed worldwide is misleading. I wonder how many of those men are female and either have a DSD such as Turners Syndrome or are transmen?

• Endometriosis affects roughly 10% (190 million) of reproductive age women and girls globally.

I've seen this idea that men get endo too therefore we have to say 'people with endo' and stop talking about it as a women's/female specific disease spreading on various social media sites too, and as another long term sufferer, it's absolute bollocks.

Yes, I'm aware of the handful of cases which have had scientific papers written about them precisely because they're so bleeping unusual. Most of the men who developed it did so as a side effect of treatment for prostate cancer. There are not young, healthy men running around with a pelvis full of endo lesions that are causing them agony, driving them out of the workplace, making them infertile, giving them constant bowel issues and bladder infections or making it impossible for them to have sex. But there are so many women. So many. In the average secondary school in the UK, it's a girl in every classroom (and NO BOYS AT ALL).

We've ended up in this position precisely because it affects women and the long running strategy of the medical profession and researchers has been to study things in men, to then announce that it affects 'people' (because if that's how it is in men, then obviously it must be the same in women, no need to verify that by actually studying women because female bodies are just so complicated anyway and might muck up their results).

So here we are, 2023, and it remains difficult to detect and incurable, and all women are offered are hormones that don't really work and cause all sorts of negative side effects, or surgery that doesn't really work and causes all sorts of long term damage. Endometriosis UK chickened out of using the word 'women' in any of their literature a couple of years ago. It's pathetic. We're now being told we have to ignore the deep rooted medical sexism b/c we might offend someone if we point it out. Well stuff that.

I find it absolutely amazing that endometriosis is about as common as Type 2 diabetes in the general population but many decades on we know f* all about it.

Some women can have it very badly but are asymptomatic until they try for a baby, others can have it mildly but suffer extreme pain.

I needed £50k of infertility treatment and two surgeries to get pregnant but my only symptom was moderately heavy and painful periods. As I wasn’t incapacitated I never sought help and am still frustrated that I had loads of other classic symptoms that were written off as normal women issues.

😆

I expect when the original claim that endo effects men too the person saying this had transmen in mind.
I wonder if they'd feel a bit deflated to discover that this claim was legit and therefore the virtue signalling could have been overlooked?

I wonder, if it was something that overwhelmingly affects men but also vanishingly rarely women, that would be acknowledged?

I know, I know.

HOWEVER ...

'Identifying the causative factors of endometriosis in men may shed light on the existing theories of endometriosis in women, which include retrograde transport, immunologic, induction, and coelomic metaplasia 16]. Further, this may provide evidence against the prevailing theory of retrograde transport as studied in female endometriosis. In the transport model, viable endometrial tissue is refluxed in a retrograde manner through the fallopian tubes during menstruation and grows on surrounding structures including the pelvis and peritoneum 16]. This theory would not explain the incidence of endometriosis in males who lack menstruation material. Thus, a more likely theory of induction of embryological remnants causing development of endometriosis should remain at the forefront.'

That may be something worthwhile coming out of the (vanishingly rare) incidence in males?

(Which, according to that paper has been recorded a total of 16 times.)

Even if there is a small chance its a health risk to all staff so should be included.

Then I wonder how much you've considered the matter. You're aware there's a substantial debate about the harms of screening. Similarly, there's active discussion of the harms of 'awareness' of zebra conditions.

20 cases across several decades is extraordinarily rare, even accounting for missed diagnoses.

It's preferable for HCPs to be aware of this as a differential rather than add this to public awareness. when there are clear risk stratification indicators. E.g., the hormone treatment, cirrhosis.

I disagree. Even if there is a small chance its a health risk to all staff so should be included.

The more awareness the better (and frankly if more men are made aware the better the likelihood of it being taken seriously!)

I had no idea that men could suffer from it so in that case they are right to include the information about men too

The more awareness of it the better surely?

I feel your pain OP, I don't want to give details as outing but am organising an event and have had a similar response from HR. I'm so angry 😡

Ignore me, I'm bitter. 25 years of untreated endo and adeno will do that to you. Menopause has been a blessing.

Bwahhahaha.
Ahem, sorry, how childish of me, couldn’t help myself.

20 recorded cases of men with endometriosis you say.... I'm surprised they haven't found a cure to ease their suffering yet.

From the first article:

'Endometriosis occurs when a tissue resembling endometrial glands and stroma grows in ectopic sites'

https://en.wikipedia.org/wiki/Uterine_gland

And worth noting hte second article, daft as it mostly is:

'There are less [sic] than 20 Trusted Source documented cases of endometriosis in boys or men'