As I wrote before, I´m now working half of the time (and it´s becoming too much now). Almost everyday going to hospital to check my INR (it´s 20 km far), visiting lots of speciallists and lots of medical tests.
I suffer form Endometriosis too, and people who have APS can´t take contraceptive, that makes my Endo getting worse. I can´t stand my terrible pains when I´m with the menstrual period or ovulation...or almost every day.
Anybody whith Endometriosis??
Hi Swirl,
I have APS and endometriosis and work full time - 12 hour shifts. Two things have allowed me to do this that may be of help. I invested in a Coaguchek XS system. Cost £350 but well worth the investment. Instead of constantly having to go to the coagulation clinic I call in my results. I have not been to the clinic in 5 years so saved a lot of time, patience and petrol. Saved more than the cost of the Coaguchek machine many times over - such independence.
2nd thing is I have been fitted with the Mireva coil. It is recommended for lupus patients and has been brilliant. My endometriosis was so bad usually they would look at an hysterectomy but as in wheelchair they were concerned regards to recovery time. Conservative treatment plan of the Mireva coil has meant no more heavy bleeding, no periods at all, reduction of all the endometriosis cells, nodules, large ovarian cyst - basically call the gyny problems that were ruling my life.
Hope this helps.
Take care
Exactly the same suggestions I was going to make!!
Both ace inventions that have changed my life for the better!!
Oh and I work full time in central London - an hour and a half commute each way... but that's just me, certainly couldn't do it without the coil though. I swapped to Clexane a few years ago too (after an accident involving warfarin and that makes a difference to me too.
I just started a new job and when I was assessed for it they told me that recently (maybe 2010?) the definition on Disability changed and now if you have a long term illness. and that you could not survive without treatment then you have a disability (obviously it is a little more specific than that). But this means that I am disabled, and as a result my company can treat my trips to hospital clinics differently and they don't have to get me to make up the missed time!
Tx
swirl - i'm working on this very thing as we speak, alot still in the works - will keep you in the loop -------------jet
Hi there,
I personally don't have endometriosis but do have adenomyosis added to my mix of Lupus/APS problems. I completely sympathise as I only get ovulation pain on my right side and I've lost count of the number of times its been diagnosed as possible appendicitis/grumbling appendix before my diagnosis.
I have to say that I was specifically told that a mirena coil was not advised with my lupus as there is a higher rate of perforation for some reason and who needs that when you're on anticoagulants?
I had the Implanon and haven't even had a period since let alone any pain, mid-cycle or otherwise. Having it in and out was also not as bad as I imagined.
Hope this helps xx
Hi
I have Lupus and APS (not endrometriosis either) and I have had my mirena coil for almost 5 years. It was first fitted when I was on Warfarin. I'm not on Clexane. My Lupus and APS were first brought on by the pill (we think) and I had the most horrific periods and now I haven't had one (or the pain) for 5 years - it was blooming painful having it fitted in the first place!
Worth asking again - honest!
Tx
Swirl,
I'm thinking about help too. Something for all of us to remember is that we do all have APS but we are all different too.
Not two of us are the same, as far as other ailments, pain tolerance, etc. ya know. So remember that when looking at us "as a whole".
I never thought I would be looking into possible disability...ever, until other symptoms arose in these past few years. Now, I'm pondering the idea. Talk with your doctors too, that's what I'm doing. Each one of us must do what we feel is best for our ourselves and family.
I've previously been a stay at home mom, now I'm wanting to work but I'm finding out my body won't keep going and my mind (even when I'm not dizzy) won't stay clear enough for me to focus...so in short...do what you need to for yourself. I wish you all the best!!
If I end up going and asking for help, I'll announce it to all of you and help in anyway I can to make it easier on the next!
xxxx to all
Mommaleda
Hi Swirl,
I had the mirena coil fitted 5 yrs ago had it change as well. My hormones currently all over the place im 48 so am bleeding most days but no where as much im guessing if i didnt have it!! not sure if peri menopausal or endocrine stuff going on but it is debillitating - aps in flare!
re work i coped with 20hrs on a busy ward until flu 2010. failed phase return 3 hospital admissions now on long term sick looking at redeployment from my ward post. Been doing same ward post 25yrs so i have iniatiated applying for tier 1 retirement due to ill health plus redeployment into a lesser role.
currently with many symptoms and ? sjorrens syndrome endocrine issues i couldnt possibly work being off sick and time to rest i am still v fatigued anxious and finding it hard to cope with recognition of my symptoms hence im pushing for us to publish our issues living with this condition. i got primary aps so i keep being told i dont have an active connective tissue disease but prof K who i paid to see privately thank goodness wants more test and said i should have come sooner to see him as been so ill now for nrly 2 yrs...
so some light with my own personal battle 
but at the cost of my poor adrenal glands - we should not have to go through all this i need my energy for me not to fight for recognition kathy xxx
I am disabled through social security. I Was denied ssdi for aps, but was approved for severe lupus..
I couldn't have the coil fitted but I do have the implanon implant. Lasts 3 years and other than a plaster on my arm for a couple of days, was no inconvenience 
How do you manage your fatigue?
Shattered but happy
Hi everyone, just wondering how many of you were initially referred to a neurologist for your APS symptoms. My main one was loss of vision.
I wanna know about your APS/hughessyndrome. how you found out you had it, and what your symptomes are.A poem I wrote early after diagnosis
