Hughes syndrome question

[letslaugh63]

while living in Spain I was hospitalised not going to give all details but short version is I had ulcerated colon and a mass of polyps. They said was caused by blood clot I had as far as I know i've never had one.could this have been Hughes syndrome.now been back in UK for nearly 2 years was in hospital for same symptoms but cut scan showed u c d colonostopy ruled it out.now hospital here also found lessions on liver their biggest fear at time was multiple organ failure and their final answer months later was I b s I'm no doctor and have had IBS for years I know it was never this.sorry for spelling I'm rushing as need to go to work not looking for anyone to give diagnosis but any thoughts that Hughes is a possibility not loo

[MaryF]

I there it is a real possibility and alongside staying on this site for your Lupus needs you need to look at the charity Hughes Syndrome Foundation... who can advise on specialists both in Spain and in UK both on the NHS and at the private London Bridge Hospital, you need to pay attention to it, if its a possibility some with Lupus have Hughes as well, I do. Wishing you the best of luck Mary F x

[letslaugh63 in reply to MaryF]

I am back in UK for good now but wished I'd stayed in Spain a little longer as they took biopsy of rash,oh I forgot to add that each time I've been in hospital with bowel/stomache I got rash a couple of Month later.never connected it til a few months back x

[Petrof]

Hi, i have Hughes and have ongoing mysterious pains in my lower abdomen - so far scans and everything negative. Gynae and gastro blame it on lupus, reumatologist says it can't be lupus, I don't care, just somebody help me, that is what I think. Have been to Aand E so many times, now I just suffer at home. Improved a bit after menopause but still there.

Hope they will find what it is and how to help you.

[letslaugh63 in reply to Petrof]

Is it on one side as I have an ache on right side had it after my 1 St child wasn't allowed any form of contraceptive as thought it was pelvic infection .short story is had endometrosis had a full hysterectomy nearly 20 years ago but I still have ache which flares up now and a again which hospital always think appendix lol

[Sher78]

I have APS & they diagnosed me cos they were doing a lap & when they went in there they found my bowel was being strangled by blood clots. Also diagnosed with PCOS & Endometrosis a couple of years later & did suspect there was some sort of link there somewhere :/

[letslaugh63 in reply to Sher78]

I have always thought I still had endo.when all this came together autoimmune I gooled lupus and endo you'd be surprised what is on there it's on USA site.I personally think there connected x

[letslaugh63 in reply to Sher78]

Sorry sher how are coping with that on top of your autoimmune must be dreadful x

[Sher78]

I was diagnosed with the APS, lupus & all the other autoimmune stuff in '94 & the endo & pcos '96 so in all honesty I can't really remember any different. I have found that the stronger my core muscles r, the less I experience any probs from the endo or pcos. Only problem is cos I had a 2 year flare, my core muscles have turned 2 jelly so I gotta try & build them up again x

[grannyjogger]

I had no idea endometriosis was connected with autoimmune conditions - I suffered for years with this before I had my kids (now aged 28 and 23). In fact when I went into hospital in 1983 for laser treatment on the endo they told me it had made me infertile - my daughter was born the following year. I also had three miscarriages (one of them ectopic) and pelvic inflammatory disease (PID) in the years between their births and I now think this was all related. One of the things I have noticed is that so many people have had similar problems in the past and medical professionals never seem to find any connection. Perhaps autoimmune dieases would be better understood if they started to connect all the symptoms like a jigsaw so that they see the whole picture instead of looking at symptoms in isolation.

[letslaugh63 in reply to grannyjogger]

Endo isn't classed as autoimmune here as far as I know or as usual some docs would agree and some don't in usa .I personally think it is .I also agree with you granny jogger they should be looking at whole picture or at least having communication between rheumatologists which they don't seem to having.

[letslaugh63 in reply to letslaugh63]

Endo might just be the starting point as I feel it was for me x