Endometriosis and auto-immune diseases

[Daisy_Steiner]

Hello everyone,

In my online research on endo, it seems that there are ties to auto-immune disorders, although not fully known what the link is (and some think it is an auto-immune disorder in itself). It got me thinking as I have a very strong family history of auto-immune disorders - my dad suffered from ankylosing spondylitis, my mum suffers from sarcoidosis (which is in the same family as lupus) and my eldest sister suffers from multiple sclerosis.

Does anyone else have an auto-immune disease as well as endo or have similar family links?

xxx

[mylady77]

I have CFS/ME as well as confirmed adeno and suspected endo - awaiting a lap.

My mother and sister both have CFS/ME and my mother had rheumatoid arthritis as a young girl.

I seem to be the only one with gynaecological issues at the moment but we're keeping a close eye on my daughter and niece as they develop.

Fascinating to read about the link between the different conditions - explains a lot!!

[PAPanda]

Hey daisy, I just saw this post by you from a long time ago but I've been wondering the same. My dad also had AS and psoriatic arthritis, I have the same, and my mum and sister have autoimmune issues (juvenile arthritis , ME and costocondritis) After decades of pelvic pain - I'm now 50 - am finally on the waiting list for a laparoscopy early this year.

I know how hard it is for many women to be listened to, understood and diagnosed. I wonder why there isn't a standard screening questionnaire with GPs, or online through them, for gynae issues that includes all symptoms plus any risk factors for developing endo such as other autoimmune conditions.

My feeling is that it could be done but the NHS does not have the resources to investigate and treat all the women that need it.

But there could at least be an NHS womens health portal with comprehensive online info advice and support with trained gynae experts to help, and a package of info on both diet, exercise and relaxation ( eg free online yoga videos targeted for endo/adeno plus meditation/mindfulness to help with pain), wellbeing and mental health support.

At the moment women have nothing and it's left to groups such as this online to provide support, advice and help.

We deserve better.

With growing awareness of endo and other women's health issues I hope 2024 is going to see more positive change. Here's to a happier, healthier year ahead for all of us x