Sticky Blood-Hughes Syndrome Support

Feelng fed up!!


Sorry but I need to just need to let it all out!!!!

Been to the hospital today for an uterine ablation to help with my very heavy periods which have worsened since ive been on the clexane. Got all prepped and they did a hysterocsopy (camera) and then said I had an 'unusual mass' covering my cervix. They couldnt do the procedure and instead took several biopsies which I have to wait 7-10 days for the results.

I am severley anemic from the continiung menstrual blood loss so know have to have IV iron, which is another trip to hospital.

Just wanted something to go straightforward for once. Its one thing after another at the moment. Saw a cardiologist 4 weeks ago and had an echogram as Ive been having pain in my side. He said I had a suspicion of a hole in my heart.

So thats two thrombosis, ovarian cysts, kidney stones, recurrent UTI, , menoraghia, gallstones, intercranial hypertension, supected hole in the heart and now an 'unsual mass' on my cervix. I need a break!!!I and I cant even get travel insurance lol!!!

Sorry I dont want to feel sorry for myself but was really hoping today would be a step forward and instead its 2 steps back.

Helen x

14 Replies

Hello, I am so sorry you are having such a horrible time, and I am glad you are telling us about it Helen. Have you got some strong family members around you and good friends. I know it must be very difficult, but you must have some relaxation time with all this going on. It is better they get to the bottom of this now, and clear it up, it may be something left over from last pregnancy or scar tissue or something. An awful lot of hole in hearts and valve problems appear in us lot. Let us know how it all is going, and utllize this forum for the support you deserve. Sending you best strong good wishes xxxx Mary F x


Hi Mary.

Thank you for your prompt reply. I have a great husband and some fab friends who are very supportive but I dont always want to tell them how I feel as I dont want them to think I'm a negative person and I really do try to think positive most of the time.

Unfortunately my parents stopped speaking to me last year when I had the clots as they said I was self absorbed and selfish, thats a long, sorry story, but it was ironic when my mum was diagnosed with a corotid artery thrombus two months ago!

Didnt know that hole in the heart was another APS thing, in a way I find that quite reassuring as at least its all linked and not another separate thing - does that make sense? Are they congenital or can they just develop?

The people on here are so knowledgeable, supportive and positive, I dont know how you keep it up but I am so glad you do!

I have horses and I love spending time with them, thats my relaxation, oh and the odd glass of prosecco!

Thank you for listening.

Helen x


We all have the right to be negative at times!



Yes - I try and shield my lot as well, understand your point here totally. M x


Hi Helen, sorry to hear you are going through all these things, also not the support of some of your family :(

I don't know if the hole in the heart is linked to Hughes.....maybe just a coincidence? it is strange how so many things a lot of us seem to get tho'?

Spend plenty of time with your horses definetlyas I like to spend time with my pets when down or have a lot on my mind.

We are always here to talk to, never feel alone hun, please let us know too how you get on with your further tests.

Sue xx


Hi Helen

So sorry to hear what an awful time you are having, I really hope all comes back clear.

I struggled with menoragia for years too, it's so exhausting and I ended up having a hysterectomy, before dx tho, I not to sure they'de agree to surgery now.

Just all seems su unfair and p##### you off sometimes cos it never seems to end. It gets us all down at times.

Hang in there hon, thinking of you and sending positive thoughts.

Take care big but gentle hugs n love Sheena xxxxxxx :-) :-) :-)


I hope you are feeling much better. I feel like you on ocassions, as it seems that I have everything that APS can throw at you. I felt so fed up on Tuesday as I got to the hospital at 7.45 to have bloods done and then Orthodontics (due to Sygroens) and then went back to Haem and waited until 2.15 for a doctor who was there but was on his own, but I needed to get back to the surgery (GP) to have some dressings changed at 3 so had to say that I needed to get going. I was told that there were more people in front of me with worse situations so off I went and then received a call at 8pm. I know that there are people who are worse off but when the staff say that I think to myself what the hell am I here for? I feel terrible I have had clots , stroke, bleeding, etc etc I keep telling myself I am going to take more control of my life and do what I want like going on holiday, but then you get one of the doctors say well with your varices, its dangerous and then the experienced doctor says "go for it" and enjoy life. Whilst I was waiting the other day, one of the patients was going abroad for two weeks and th consultant was saying you cant go, but he said I am going and thats it. I need to get away from this dismal weather which is another downside. Well thats my moan for the day!!!!!!


So sorry to hear about all the health challenges you are dealing with Its hardf tro have so many things happening at once.

You have had good advice in other comments about taking care of yourself and spending time with your horses. I think the comment from your family about being self absorbed is due to a lack of understanding of the effects of serious health issues. We need to put a lot of attention on to our health when we are dealing with so much and have so much at stake. I remember reading somewhere about a counsellor whoi told a. Parient she was too preoccuoied with her illness. It showed so little iunderstanding obviously it is good to be able to take your mind of it when you feel able to do but there's no avoiding the need to pay attention to doing what we cab to keep ourselves safe and improve our quality of life. I do hope you get good results from all the tests and that you get plenty of support and be as kind to yourself as you can be. Thinking. Of you and let us know how you get on all the best Ann


Hi Helen I empathise with how you feel and also what you say as not appearing negatives.Im very positive too but when you are consumed by continual health problems you can't help but feel sorry for yourself or down it certainly happens to me.Sending you positive vibes and know you are not alone.


Hi Helen, sorry you have been having such a rough time. I'm glad you can vent here and get understanding and support. Its good that you can allow yourself to feel peed off and down rather than try to gloss it over. I struggle with that. I hope the horses and the prosecco help! Just wanted to say how much I understand where you are right now. I'm struggling with severe pain all over and fatigue, having some rough side effects from the pramipexole I am taking for fibro, plus I am fighting to get a definitive diagnosis of APS. Lupus, My Haem so far will only write that I have APL, lupus antibodies, protein s deficiency and lupus like syndrome with cardiac probs too. To top it all off I am having a fight with my gp for him to prescribe planequil even though the Haem has said I must start on it and it will help with definitive diagnosis. And it was just my birthday and I've put on 2 stone in 6 months, what with the weight and pain/fatigue I can hardly walk. But tomorrows another day :-) ! Hugs, Sue. X x x



Thanks everybody for your lovely comments, it really does make me feel like im not on my own.

Been to see the haemo today who has booked me in for IV iron so hopefully that will make me feel better and going out for lunch with a friend today.

I think Daisy made a great point about 'going for it' and thats what I'm going to do (well as much as I can!!)

Good luck to everyone xxx


I have had dysmenorhea problems from age 14 to my early 50s , even though the APLS didn't make itself known until I was in my 40s. And then, when I was first put on warfarin, I heard the advice, "if you go through more then 1 pad in an hour, go to the ER." Well, even before I was on warfarin on that monthly "first day" I went through 1 in about 30 minutes. But oddly, the warfarin didn't really change anything is far as my period was concerned.

And I also had numerous polyps which had to be removed -- not through oblation, but by a vaginal "snip" procedure. After the procedure was over (which was done during my usual yearly check-up --i.e., with no notice or planning) the doctor told me to stay quiet for the next week. "But I'm driving to Chicago tomorrow with my husband to attend a reunion." "Gosh, wish I'd known that before I did this procedure." "Me too." Sigh.

Odd coincidence. . . . or is it a coincidence? Is there something about excessive bleeding which triggers the APLS or vice versa? I wonder how many of us have had these 2 problems?

During one mis-timed exam (it was mid-period) the ob/gyn expressed concern about the clots he saw. "Oh those. I've had those every month for years. Most of them I pass are much larger." "REALLY?" he asked. "Really." "That's so strange. Such clots are usually associated with disease." "Well, I've had them for years."

So sorry you're having all these problems. Our thought are with you and feel free to "obsess" to us -- we're all there with you and many of us have heard the same accusation/assessment from our own family members (my latest "obsession" comment came just a couple of weeks ago.)


Hello Helen I hope you results come back cear,you must let us know and whatever happens the people on here will support you unconditionally. I think that is one of the beauties of theis group you can off load when you are feeling down and nobody minds. i also kept to myself for so long but have had so many problems and hospital stays this last 12 months my family have had to know all the ins and outs and i have to say i have received wonderful support and support is the right word as sometimes i felt i was being actually carried on their shoulders. I have even had to teach them all to do the clexane injections in case i am unable to do ut myself. what i am trying to say (albiet longwinde sorry) is dont keep your burden to yourself when you can not carry it alone anymore. I will be thinking of you and am sending healing thoughts to you



I have really heavy periods and have advanced endometriosis with endometriomas on both ovaries. I am waiting for a hysterectomy in June. But I have often wondered if there is a link with endometriosis and APS, with it being an auto immune disease.


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