Sticky Blood-Hughes Syndrome Support

APS, adeno/endo or something else?

Hello. I'm APS positive and have adenomyosis, with various symptoms. However, two weeks ago I ended up in a&e with heart attack symptoms . Tests showed it was not my heart and was sent home. Since then I get twinges in my upper chest and back button not the intense squeezing pain I had before (I had three short attacks in succession).

Does anyone know if this could be linked to either APS (un symptomatic apart from past miscarriages) or adeno or endometriosis?

Many thanks.

7 Replies

Firstly, hello, and are you being looked after by a Hughes Syndrome/APS specialist, this is crucial, presumably they did the various blood clotting tests as well as looking at your heart? You need to get to the bottom of this, I had similar and it turned out to be Pericarditis which is very linked to Lupus, you need to make sure that they look at your levels of vitamin D, b and iron, as well as a thryoid panel as all these things are linked. What medication are you on for Hughes Syndrome/APS? MaryF


This has happened to me too pain so bad I nearly past out but bloods ecg etc... I often have pain like this between my shoulder blades too no answers at the hospital I am weak on my left side now 30% weaker than the right - they have a new blood test which is more sensitive to detect heart involvement don't know if they are using it as standard now though x


Hi and welcome.

I agree with what my colleague, Mary, has said.



I had the same symptoms two years ago. In fact I was having 15 of these a day - agonising and very frightening. I was finally diagnosed with SLE (systemic lupus) as well as my APS. Since being on warfarin and anti malarials I dont get these any more thank god.

Best of luck.

Regards Diane


Hello janeingirona !

Have they ruled out a pulmonary embolism (PE)? I had chest and back pains when I had mine and thought I was having a heart attack. A CT scan confirmed a PE.



..and regarding adenomyosis. I also have adenomyosis and I would think the symptoms would be mostly related to your lower abdomen and lower back with - intense menstrual type cramping and bleeding, as opposed to the upper chest and back symptoms you are experiencing.



Hi everyone! Thanks so much for your replies. They make me feel I'm not mad/over-reacting etc. At A&E I had bllod tests and ECG as well as clotting times checked plus chest xray. All fine. I don't know if PE would be detected by any of these.

On Monday I have an appt (private and costing an arm and a leg!) with a leadingspecialist in Barcelona (Dr Ricard Cervera) so hope to get some answers. Where I live now, doctors are jot exactly knowledgeable and I get lots of blank looks when I mention APS or else very confident negatives (No. APS probabky isn't responsible for your fatigue/pains/bowel issues etc...) Maybe they're right but I need to hear it from the horse's mouth

I recently read a paper by experts which stated that oestrogen can cause APs symptoms and his is also what causes adenomyosis so I'm sure there's a link!

I'll keep you posted!


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