Endo isn't a 'real' thing though is it?

[Arkangel]

Said by my SIL. AIBU to be offended and to think this is a very uneducated opinion?

My endometriosis is painful and I haven't had an 'attack' in a good couple of months. So today I've been laid on the couch with a hot water bottle applying for jobs and stuff, I have an interview this afternoon and have been to two other positive interviews this week. I'm in a relatively high level of pain but I'm so used to it it doesn't particularly effect what I'm doing as long as I listen to my body and don't overdo it.

SIL visited this morning with my brother, who was picking up the pressure washer and then helped himself to a sandwich, and she came out with that little pearl. Like I'm not making enough effort to get a job because I'm on my Couch, in my House...

The conversation literally went from the new set of mugs I have (they are beautiful) to "you know you'll struggle for work if you're like this" gestures with hand at my abdomen "do you think that's why they sacked you"...
Me: " um, no. Endometriosis has never affected my job unless I have to take time for scans or operations and I haven't had either in the last three months"
Her with this fake sympathy expression "but it's not a real thing though is it? Like, biologically you're not on your period. Do you think it's just in your head because I've never seen you take painkillers so it can't be that bad. Maybe just try to be positive and ignore it and it'll go away"

WHAT??????

(I won't drip feed, SIL is awful, she thinks so much of herself and really she has no right to because she's not all that at all, i don't like her and she has a habit of snarky comments at me knowing that I wouldn't tell my brother)

I'm sorry I'm dumping on you all again but it's so much easier to post here than, I don't know, throw a vase at her head. I've been out of work four days!!!

YANBU at all OP, what a horrendous thing for her to say!

I hope that for every single illness or ailment she has for the rest of time you respond with "Oh well, it isn't a real thing though is it? Are you sure it's not just in your head?". Do it over and over until she gets it and apologises.

I too would tell your DB how she has made you feel. Ask him if he could try explaining to her as you fear you would only shout at her - you are in pain can't be expected to be all that reasonable, nice etc!

You don't have to protect her image for him! What if he marries her, thinking she is perfect and you all love her to bits?

I should tell my friend with endo this. All in her head. Had she just had a positive mental attitude her life would have been so different.

Brother and sil deny I have ME. Brother has threatened to punch and deck me because of it. And worse. It has got physical and as I was collapsed I was unable to move, ie run away.

Some people are idiots. Yes, your sil may have everything handed to her on a plate and what looks like a great life from the outside. Yet she is still an idiot. Would you seriously swap places with her if you had to be her? 😱

She also had to have surgery as her womb, bowel and bladder had all become glued together with it. Your SIL should look up that sort of thing!

My friend is in a v supportive endo group - they're always posting on her fb wall etc. If you can't find a group, do you want me to ask her for details of hers and PM you? Of course I won't if you don't want me to

If SiL is just a minor irritation, ok, but if she gets on to you a lot then your brother should know about it.

I actively avoid her if I can. My mother adores her though so she's always at family gatherings and obviously the children love their "cool aunty" but dp doesn't like her either so we can be an island with my other brother.

My little brother thinks the world of me, he's literally dumped a girl for being rude to me once (years ago, she was the worst) and he's really besotted with her, and she is lovely to him. Just has her head very up her own arse so far she can't actually see how privileged she is and how it's comes across as being a knob.

How about: Being an asshole isn’t a medical condition either but still seems to affect you?

I didn’t mean the either!!! Take that out!

Oh all these things would be great.

We have a thing coming up that my best friend will be at, she's 24 with endo so bad that they want to remove her womb, laps 4 times a year, looking into IVF. I'm going to prime her and get those two together. It will be savage.

God that's mean, isn't it?

Stupid woman it’s very much a real thing it made my mother so ill through her 30s she ended up asking for a hysterectomy at 40 and her health improved dramatically.

Your SIL isn’t I’ll informed and not very intelligent in my view.

You'd be doing her a favour in the long run if you told your DB. Sooner or later someone is going to stand up to her and let her know what a dick she is. It would be kinder if she knew before it comes as a surprise.

And, sigh, I hadn't thought about endow potentially being hereditary. I hope my dd doesn't suffer the way I did. It was a small mercy that I was also blessed with early menopause,which cut the endo sufferings early.

So frustrating, I worked with a woman who was convinced that anyone who gave birth in a hospital, had any drugs during labour, didn't breastfeed until age 10 and didn't have a Lotus birthed, placidly smiling, well (co) sleeping baby that only wore organic non bleached baby clothes hand spun by tibetans was a lazy waste of the planet's resources. She was very entertaining for us all when she got pregnant. Poor girl ended up with severe SPD and PGP (no more antenatal yoga), a c section, an infection and mastitis that led to her being readmitted and the baby being bottle fed. She still comes out with all this shit though, but apparently all her woes were caused by her being brought down by all the negative attitudes she was subjected to from all of the people around her who doubted her. If she'd not given in and phoned the ambulance and just used an amber bracelet, breathed just right and some homeopathic remedies instead, the nasty doctors wouldn't have ruined everything and she and her 'Bubs' would have been just fine. Not dead or anything... There's educating some people.

Firstly and most importantly,

You can't argue with stupid.

However if you want to try and educate her you could send her some of these and also ask here why there are so many organisations set up for this apparent illness thats all in your head.

www.endometriosis-uk.org/personal-stories

endohope.org/2016/05/18/the-three-types-of-people-who-dont-believe-youre-in-pain/

www.theguardian.com/society/2015/sep/28/endometriosis-hidden-suffering-millions-women

www.huffingtonpost.co.uk/entry/endometriosis-what-to-know_us_56e1f8eae4b065e2e3d567ac

she has a habit of snarky comments at me knowing that I wouldn't tell my brother

So, get smart, send a joint email to them both, not attacking your SIL as that will backfire, tell them that you were really hurt by your SIL comments saying but it's not a real thing though is it? and include a link to this information PDF from endometriosis UK
www.endometriosis-uk.org/sites/default/files/files/Information/Understanding-endometriosis.pdf

Or tag her in fb/insta post saying remember how you said my endometriosis wasnt a real thing, i was really hurt and wanted to show you that other women suffer too...... make it public and inc #endometriosis so that others can comment

I suspect however if she has a habit of doing this sort of thing then its not the endometriosis per se, its going to be anything that she can get you to react to so you need to work on having smart responses that shut her down and or send a joint email every single time to your brother but in a clever way, bringing into the email what she has said to you. Or bring out the mumsnet classic Did you mean to be so rude?
Or stop meeting up with her and dont be shy about the reason why.

Hey SIL... GO FUCK YOURSELF.

That's the only appropriate response.

My endo symptoms started at 12. Finally diagnosed at 22 by which point I was in pain every single day. Have had six surgeries and tried every treatment. Had to stop working at 29.

I've had similar comments from family and overheard similar from friends. I've been on morphine for over 10 years and my brother acccused me of beinga drug addict (which is especially hilarious given that he smokes weed every day and takes much stronger stuff recreationally whenever he can). I've had people tell me it's only this bad because I've "given up". People are fucking clueless.

Only you and possibly your partner know what you go through. Everyone else can mind their own business. They have no clue and hopefully for them they never will.

There's biting your tongue over a minor irritant for the sake of family harmony but sometimes you need to tell an offensive fucker that they're being an offensive fucker.

I'm fairly sure that the surgeon who operated on my due to endo has more medical training than her and he seems to think it's real...

I don't think I would have been able to restrain myself from telling her not to be so fucking stupid

Ugh, my dad is like this. After 10 years he wants to come to appts to see any of my 6 consultants as he thinks it’s all in my head, and the meds are unnecessary. His advice: “think positively!” Yes, I’m sure that’ll stop my immune system killing my body

Trying to educate hasn’t gone down well; I’ve found telling him to fuck off helps best. Maybe try that approach?

I agree. I had mine diagnosed by laparoscopy. Worrying, I found, was that a female educated medical worker I know, seemed to be insistent I'd benefit from endometrial ablation (womb lining removal), as it worked for somebody she knew. I pointed out that my endo had been mainly found on my bladder (which presents a nice set of problems). Laparoscopy is the usual method of removal in any case.

Why would she think it isn't real though? tbh I'd never even heard of it until I was diagnosed with it after having a hysteroscopy, it's like saying diabetes isn't real or something like that lol very odd indeed

Tell her she must have been confusing endometriosis for something like fibromyalgia or ME, both of which are terms used for poorly defined syndromes without convincing repeatably demonstrable pathology.

(Eventually I would expect that there will be more than one better-defined disorder with which some, but not all, of the people identified as having "fibro" or ME will be diagnosed; and that diagnosis may, hopefully, be accompanied by more effective treatments for those that actually need it)

Maybe she only believes in visible illness like scabies and bubonic plague.

Throw her in the trash I say.

I should also add, my mum was very much in the "positive thinking cures everything / only negative people get sick" mindset and constantly trivialised the pain I was in. Then she was diagnosed with a gynae cancer, then terminal stomach cancer. Her early symptoms were very much like mine and she ended up apologising profusely for not being more supportive. I think people have no clue until they experience something (obviously endo is nothing compared to cancer, but she just didn't understand how pain and fatigue wears you down until she experienced it too).

As someone diagnosed with both ME and fibro I actually agree Python - in my case I believe it's a thyroid disorder, although haven't been able to get anyone to listen for the last 10 years so I'm not holding my breath.

Well, endo can make conceiving more difficult but it's not always the case. My mother was crippled with it for so many years, yet got pregnant at her first attempt - 3 times in a row. No problems with pregnancies or births either. She had a hysterectomy at 41 as she knew she didn't want more children, but they left her ovaries in as it was thought better for her at the time. The doctor said often ovaries shut themselves down after the op anyway (no idea if that's true?) Anyway, hers didn't, so the endo spread around her bowel hence the later bowel op/cancer scare.

My mother had to have menopause induced at the age of 58 as her ovaries were STILL going strong and forming eggs each month! Dr said if she'd not had a hysterectomy he'd be warning her to be very careful with contraception! She developed DCIS which is hormonally related in her case, so the decision was made to shut them down with injections. No further treatment was ever needed and she is free of it all at last.

My best friend has endo and had no problems conceiving four times (twice by accident when using contraception). Just to give you some hope that endo does not inherently equal fertility problems.

Roomba

I have had no problems conceiving either

It's not all that many years ago that Multiple Sclerosis was thought to be not a real thing.