Endometriosis UK

What age can you develop Endometriosis?

Hi,

I was diagnosed with endo in August 2016 at the age of 24 after a 10 year battle with doctors trying to persuade them that was something wrong! My sister is 19 and since she started her periods has had all the same problems as me but has been told by doctors there is nothing wrong with her. The last appointment she went to she was told that she is too young to have endometriosis!

Surely this is complete rubbish?? My understanding is that as long as your have periods the endo can grow. I was wondering if anyone could shed some light this please as I may be wrong

Thanks in advance,

Casey :-)

EDIT: Also, does anyone know if endometriosis is genetic/ hereditary?

15 Replies
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You're right, if you're having periods you can have endo. Your sister should insist on being referred to a specialist in endo from the BSGE list.

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Exactly what I thought. I am going with her next week to a doctors appointment and insist that she is referred. I don't want her to struggle for as long as I did. Thank you for your help :-)

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Also, I've never heard of the BSGE list. Thank you for that information I am looking in to it now.

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That doctor's knowledge is extremely out of date, this link explains how that misconception came about. endometriosis.org/resources...

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That is really helpful, thank you :-)

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One gynae told me (I’m 18) that I’m too young to have endometriosis. I went to see an Endo specialist last week and he thinks I have it. So anyone can get it as soon as they start their periods. I’ve had painful periods since I was 11.

Also endo can be passed on through genes. However no woman in my family has it but the endo specialist explained the other causes of it as well

If your sister ever needs someone to talk to as well as you, I’m always on here.

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It really baffles me that they are allowing young girls to go through so much pain for the sake of it! Both me and my sister passed out during exams at school because of the pain and the doctor still refused to do anything about it, apparently 'some girls just get bad periods'.

As far as I'm aware no one else in our family has it we seem to be the unfortunate ones!

That's really kind thank you, and same goes to you :-) it's nice to know we aren't alone going dealing with this! x

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p.s I hope you get a diagnosis soon! Although they can't cure it, it really helps to know what is going on inside!

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Hi,

Unfortunately Endometriosis can be hereditary, although I don't believe there has been any solid proof.

Me and my cousin were diagnosed within the same year, after I mentioned she may have it too. I recently found out an aunt was also diagnosed 2-3 years ago. This is all on my mum's side of the family. When I was first diagnosed I didn't think any of my family had any history with it nor did anyone know what it was.

I hope your sister gets the help she needs, along with all the other younger girls out there being ignored. For years I believed my period pains in my teens and early 20s were normal, turns out it's definitely not.

xx

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i’m 16 and i’ve had the same issue, the doctors have been taking the piss - excuse my language but it’s true, lol. i’ve been through several ultrasounds and ibs and conceptive polls and none have worked and they still say nothing’s wrong with me. it’s a joke to them, but not to me. i changed doctors and i’m still having the same problem with them.

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I know it's hard but you really need to persevere with it! You know your own body and know when something isn't right, don't let them tell you other wise! x

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thank you! and know sometimes i feel like my parents don’t even believe me, but i started my period when i was 9 so i know normal pains, i’m sort of use to them now. but i know this is the normal pains you get when your on your period xx

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My Mum didn't really believe me either even though I used to pass out from pain, it wasn't until I was diagnosed that she believed me. which was 10 years after I started my period! At least you have all of us on here to talk to you :-) feel free to message me if you need to talk about anything xx

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I am 19 and only just been diagnosed, they now believe the problems I have suffered since I was 14 was endo related. It can be harder to diagnose when younger as it can be less visible and clear in colour but the longer you have it it changes colour, becoming red and inflamed. Also it can go undiagnosed even with a laparoscopy if it is not carried out by a trained eye.

From what I was told from a endometriosis specialist is that when being formed in your mother’s womb the endometriosis is already implanted in you. So you are born with endometriosis but doesn’t cause you trouble till later life. Articles on the internet say if you have endometriosis and have a daughter she is more likely to have it. As well as if one sister has it the other is also likely to as well. But I haven’t read any statistics so don’t take my word.

I wish you and your sister the best of luck x

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Hi, that is really helpful thank you! And I'm so glad you have managed to get a diagnosis at quite a young age. Hopefully the doctor will refer her to a specialist at the appointment on Friday.

Thank you and best of luck to you too :-) xx

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