Endo in th family

Hey has anyone else found that others in their family also suffer from endo?

My big sister (9 years older) has/had stage 4 endo she was diagnosed when she was 24 and had a full hysterectomy as back then they thought it was a treatment 15 years later she has suspected endo on her bowel and is looking at having surgery to remove her bowel in June. I was diagnosed 3 years ago after miscarriage alongside a ectopic pregnancy however had suffered since the age of 10. My niece is 21 and is also suffering from this. My mum and aunties have also suffered from what they now believe to be endo (all had hysterectomys young).

So it's got me wondering...

9 Replies

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  • Hi

    I am 37 years old and I have stage 4 endo, my half sister is 25 and has stage 1 endo. My aunt has stage 4 endo, and my mum had develop after her children were born and had a hysterectomy. 

    Anna

  • See when you ask the specialists they make out its merely a coincidence to me it's more than that

  • The genetic link and heredity is widely explored but I don't know if anyone has been able to get 100% concrete evidence yet, my Mum also had endo. x

  • What is good is due to this we were able to get my niece treated early on :) 

  • That's really good, the treatment has developed so much over the years too. I try not to imagine what would be different if mine was diagnosed early, although probably no different my symptoms first cropped up when pregnancy was prescribed as treatment lol. My Mum had a hysterectomy because she suffered with "hormonal migraines" her consultant just mentioned finding endo but told her it was all gone so she didn't get concerned with it, so when it came to my symptoms she didn't put two and two together unfortunately. x

  • There is a higher chance of having endo if your mother or sister have it. I don't know how much research has been done in this area. Might be worth checking on the endo UK site.

    My mum has endo, as does my auntie and my cousin all of whom have had successful  hysterectomies. And my mother even believes that her mother may have had it. But back then it wasn't widely known.

  • Yeah it's genetic, can be linked to other autoimmune issues as well - there are a lot in my family. Found out recently there is also a link to Rh- blood group.

  • I am the only one in my family with it, nobody seems to understand the pain I was in around my periods and they would just roll their eyes and say I was exaggerating. I really hope my daughter doesn't get it but at least I know what symptoms to look out for. 

  • Yes for sure my mum her identical twin my mums younger sister and my gran all had it and all 4 of them have had various treatments and all ended up having a hystorectomy. My aunt had tried hrt about 15 years ago and developed breast cancer from the treatment. None of us can have hrt now as its in our genetics according to the consultant. I know i will end up the same as them eventually! x

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