Any others with endo had an Autoimmune/positive ANA and CTD screen (with anemia)?

[moonghost]

A few months back I was tested for a bunch of things due to extreme fatigue and what looked to be a butterfly facial rash, and it turned out not only my iron levels were on the floor (5!) and my hemoglobin was also in anemia range, though less bad, but the Connective Tissue Disease screen came back positive, and I was positive for ANA including anti-dsDNA (don’t know what the pattern is though as my online results don’t show it).

I’ve been referred to rheumatology but my appointment isn’t until June, so I have no idea what these results mean for me specifically, but some form of autoimmune condition seems possible. I was wondering if there are any others who have endometriosis AND an autoimmune condition like lupus/Sjögrens/APS? I’m also aware there are rumblings in research that endo itself might be autoimmune but there doesn’t seem to be anything out there about it being associated with ANA.

My endo history is two laps to remove stage 4 and I’ve been on zoladex and hrt for 7 months since my last lap in August 2023.

[Moon_maiden]

Hi

I had a couple of positive ANA but rheumatologist refused the referral. With the butterfly rash that potentially might be lupus but hopefully you’ll get the right help.

There have been mutterings about Endo being autoimmune for ages but I doubt rheumatology as a whole wants to take on Endo, personally when you look at the definition of cancer Endo could come under that category as well, it’s certainly not a benign disease. The powers that be need to categorise at some point for our benefit and understanding but not doubt any of them want to own it as such as there isn’t enough research. We are left trying to explain to others and receiving little acknowledgment as to how bad it is.

[moonghost in reply to Moon_maiden]

Thanks for your reply, I hadn’t thought about that aspect - it is rather like a cancer that doesn’t kill you. Sadly doesn’t make you stronger either. I managed to find my referral letter online and it seems my GP suspects lupus at least. I hope you manage to find out what’s going on…

[Moon_maiden in reply to moonghost]

It is, although in severe cases you have to be careful of a blocked bowel.

I hope you haven’t, it’s not a great thing to have, at least you’ll have an answer though.

My GP has written me off, told me has had no answers for the pain.

[BloomingMarvellous]

If you have an autoimmune issue in one area it does raise the likelihood of others being an issue. One disease is just that - feel free to add others as your body choses and genetics directs….

[Fuchsiafairy]

I think there is a known link or a very high crossover of people with endo having ehlers danlos which would tie in with connective tissue disease.

I’m not diagnosed with ehlers but highly suspect that I have due to multiple knee dislocation and hyper flexible large joints eg, shoulders, hips knees and toes! But not any real over extension my fingers which seems to be the mainly mentioned joints on tests. Also some people have very stretchy skin and problems with blood vessels and heart problems.

Have you performed a sit to stand heart rate test? You can do this your self after sitting or lying down for 10 to 20 minute and take your heart rate, then stand up, take your heart rate and staying standing for 10 to 20 minutes and keep taking your heart rate. Looking at pots being a cause of fatigue and a known link with ehlers and endo.

Hope you are able to get some help, but I’m not really sure what help there is.

Good luck

[moonghost in reply to Fuchsiafairy]

That’s interesting, I do have hypermobility in my fingers, wrists and knees. My heart rate is very variable and my blood pressure is actually rather too low than too high most of the time. I’ll do the heart rate test! Thanks for the advice.

[Fuzzicle]

Hi Moonghost,

Unfortunately, endo and autoimmune go hand in hand. All of it is related to oestrogen levels so definitely investigate hormone balancing if you can, especially if you're young and premenopause.

Yes it sounds like lupus especially with the blood tests. I have Lupus, Autoimmune Hepatitis, Underactive Thyroid, Overactive Thyroid (for real I have both diagnosed through blood tests), Raynauds Phenomenon, stage 4 endo, and a rare blood disorder that causes extremely high blood pressure even though I'm in the healthy weight range. Some of us don't got good genes 😉

Are you alive? I'll take that as a yes. Do you have good days? Is it better to know what the problem is and get help than not know? Getting diagnosed with something scary is just that. You may have mild lupus that affects skin, energy, possibly joints, mine is moderate and attacks my organs too. I still have a normal life span ahead of me - whatever that means. All that matters is that I slow down, do less, so I can enjoy my life more.

I hope you get answers. I find answers help.

[moonghost in reply to Fuzzicle]

Thank you for the response. Multiple autoimmune AND endo must be quite the challenge. I’ve been gradually putting things together as old symptoms flare up again and I read more about the connections between conditions.

In the last few days I found my referral letter to rheumatology which had a lot more detail, and I have 1:80 ANA titer with homogenous pattern. That seems fairly low, but combined with positive anti-dsDNA, and present but low levels of RF and anti-CCP, what I’m reading would suggest early SLE.

You’re right - I have good days and bad days and find that anything high effort needs an equal amount of rest time, and another diagnosis or not, I can try and look after myself by not doing too much!