Adenomyosis, Endometriosis and Autoimmune diseases

[Taikaei]

Hi ladies, this question is just out of curiosity because I see several posts about a lot of us having a combination of Endometriosis/ Adenomyosis and autoimmune disease.

Following all my symptoms (that got even worse since I have no therapy but only medication to ease the pain) now I got a possible diagnosis of either lupus or Autoimmune rheumatoid arthritis due to antinuclear antibodies positive and very hight titers (referred to a Rheumatoid Arthritis centre, not sure how long it will take).

how many of you suffer of autoimmune diseases together with Endo/Adeno?

And how are you handle these?

Thank you in advance for sharing your stories ❤️

[Endofitall]

So sorry you’re facing this new challenge. I hope you get some answers soon.

I have hypothyroidism, coeliac disease and anticardiolipin antibodies, as well as endo and adeno. It helps me to understand endometriosis is part of the range of immune related conditions so that all my issues aren’t random but related - makes me feel less of a mess 🙈

[Behind_Hazel_Eyes]

I have Hashimoto's disease alongside endometrosis. I take quite a high dose of levothyroxine to combat this. I also had a blood test done for food intolerances and gluten was very high, indicative of coeliac disease . The consultant was shocked when after an endoscopy it was found I didn't have coeliac disease as my villi were undamaged! However I have since gone off gluten (just to be safe!) which has helped me with my endo symptoms.

[Moonglo]

🙋🏻‍♀️ I’ve got endometriosis, diabetes type 2, a thyroid nodule and arthritis symptoms. The only one I’ve been able to address has been the diabetes through diet and gentle exercise. The endo is being treated with Zoladex but I know it’s still bubbling away under there somewhere. It’s logical, we have bodies with chemicals and hormones reacting in them and our organs are connected to each other - if we have one problem we’re likely to develop another.

[DarkStar85]

I don't have a thyroid after cancer so I'm fully replaced on levo, technically hypo. Convinced this hormone imbalance had caused endo. It's all connected.

[Fizzypoptastic]

Hi there,

I have adeno and endo. I have been referred to Rheumatology for suspected synovitis. I’ve also got alopecia & rosacea so could be Lupus? No idea how long referral to Rheumatology will take but I’ve been suffering with swollen finger joints for a number of years and because blood tests showed normal, no action was taken.

Good luck with your journey xx

[Taikaei]

thank you so much again for sharing this. I see that we all clearly see a connection with a strong hormonal imbalance, wonder how come doctors struggle to see it?

When I suggested some check of the hormones my GP said “what is that got to do with this”.

Guess we will just continue to fight to get our issues recognised.

Wishing you all to get better ❤️‍🩹

[Moonglo in reply to Taikaei]

I also don’t understand why medics can’t look at their patients holistically. I’m lucky with my GP, she openly admits when she doesn’t know something so we can have an adult conversation. If I present her with evidence (I.e. the endo uk leaflet about referrals to BSGE clinics) she’s willing to listen. In your case, perhaps you can find the evidence (an article from a respected source, or a pattern from your symptoms and health data) and show them. They might respond better to that.

[Taikaei in reply to Moonglo]

This is a great advice. I just recently had an appointment with a GP that seems keen to listen and understand and I will definitely try this!

[KezMurr]

Me me me lol! I'm 35 and have rheumatoid arthritis in both hips. There is a lot of empirical evidence for a link between endometriosis and RA, and vice versa.

I have noticed diet massively triggers my RA flares, like the other night I went out to a Thai place for dinner so high oil, sugar and salt content. Next morning... boom pain in my hip. I follow the 'how not to die' wholefoods plant based diet by Dr.McGregor (when I'm not having a cheat day) and find that has helped significantly. Highly recommend listening to the audio book.

I also stay away from alcohol as that triggers a RA flare every single darn time! Oh and also squatting in the gym and weight bearing exercises has helped. If I skip a couple weeks ar the gym, I notice the RA pain gradually gets worse.

[Taikaei in reply to KezMurr]

I totally relate. Cheat days have a huge impact on me, triggering a whole lot of symptoms, alcohol has been banned like years ago because it’s a massive trigger and the gym helps but every time I have to pause for any reason (like the laparo) going back is so hard. Before it gets better it’s SO painful sometimes I want to give up but then I try to remind myself once my muscle get stronger how much my symptoms improve.

I will definitely have a read to the diet you suggested thanks!!

[KezMurr in reply to Taikaei]

I totally relate! I don't know how those gym people that you always see in there have the motivation to keep it up every single week haha.

I hope your pain reduces soon and you find the audiobook helpful x

[Thecraftyadder]

I have endo, psoriasis and am under a rheumatologist for possible psoriatic arthritis. I have positive blood markers, ongoing plantar fascitis issues in my feet and tenosynovitis in my wrists but no formal diagnosis yet. There is also a strong family history of rheumatoid arthritis. I'm trying really hard to keep active. I started an aquafit class this year. It's fun so I want to do it even when tired and the water takes pressure off my joints. It's really interesting to see how many of us are dealing with multiple illnesses.

[Taikaei in reply to Thecraftyadder]

I wish they could see the correlation here and try to study a sense out of it , although I’m reading several papers that are investigating hormonal imbalances and oestrogen issues as a baseline if several issues so maybe soon they will have some answers.

It’s great you found something that keeps you active because I also feel sometimes is really hard. I genuinely struggle!