Sticky Blood-Hughes Syndrome Support

Bleeding and wafarin

Hi I have APS & platelet problem. I am on wafarin & foundaparinux injections when INR less than 2.5 I am going through the menopause and for the last four months I have been having really heavy bleeding, so heavy I am unable to leave house at times. I have had scan and nothing has showed up. I just wondered if anyone else has had a similar problem and found anything that might help please

21 Replies
oldestnewest

I suffered for years with it and Norethisterone brought the bleeding to a halt.

1 like
Reply

Thank you so much I am due to see Heamotologist next week so will ask her about taking this

Reply

My Doctors wouldn’t allow me to take any medication, instead I’ve had the mirena coil inserted recently and so far so good.

1 like
Reply

Hi Would they not let you take medication because of risk of Stroke? they said wouldn’t let me have any hormone related things as said would increase risk ( I had a stroke 5 years ago).. If that coil okay for you then fingers crossed I might be able to have that or medication mentioned earlier. Just good to have some ideas to run by Heamotologist & knowing it has had some success thank you

Reply

Yes they said medication - including the above mentioned northisterone - was not acceptable for me due to previous TIAs and just from having APS.

I personally wanted an endometrial ablation (burn lining of womb away and no more periods ever!) but due to scarring from a classical c-section the gynae wouldn’t do this either.

Mirena isn’t for everyone and I’m not sure you can have it if you’re already at menopause but may be an option for you. Good luck x

1 like
Reply

Well after having several mirena coils rejected by my body I was willing to risk having a stroke I've apparently had 33 according to my many MRI's and frankly nothing compared to bleeding so heavily I could not leave the house for nearly 5 years. They stopped my Northisterone twice and twice I suffered hypovolemic shock losing over 4 pints of blood in a very short space of time, ended up hospitalised twice and twice took months to recover. I'll stick with my Northisterone thanx.

Reply

IMHO, I think you need to see another gynecologist because I do not believe that you have not been given a diagnosis or treatment. This is very abnormal and to go into shock because of the loss of blood and yet not have any treatment seems to me, to be negligent.

I am not a medical doctor but frankly, to allow you to be in this situation for 4-5 years, is unacceptable. I don't know how old you are or whether you intend to have children, but if this is a matter of life and death (and bleeding out is such a scenario), you need to see an expert, or a different gynaecologist. There are other options ie non-drug options.

I apologise for being so blunt.

With good wishe,

Ros

1 like
Reply

I no longer bleed thanx to the Northisterone and have no intentions of ever seeing a gynaecologist ever again. The problem was caused by being put on hrt prior to that my periods were very light. Their idea of a cure was a full hysterectomy, clearly not needed as I no longer have the problem.

Be as blunt as you like, it's not half as blunt as me to the Gynaecologist who didn't even apologise for nearly killing me.

2 likes
Reply

I find your answer very confusing. Do you read the information that comes with your medication called a PIL? Here for your ease:

medicines.org.uk/emcmobile/...

It clearly states that you should NOT take it if you have had blood clots and you say above you have had 33 Strokes! Has it ever crossed yours or more importantly whoever is prescribing this for you mind that perhaps the two could be connected? Even if it isn't, it's clearly negligent to be allowing you to have it prescribed! Personally, I think it's time you stopped worrying about seeing a gyny and find one you trust so that you can treat the underlying cause of your heavy bleeding. I just don't understand why you risk further strokes, blame it on your warfarin, which from past posts you say you have at an extreamly high level, and then say that a Dr almost killed you when it would seem to me they were trying to help you and you are now not helping yourself. Things change, what may have been appropriate for you 4-5 years ago could well not be now. You owe it to yourself and your family to at least find out what is now appropriate for your health. You did say you don't mind us being blunt!!

3 likes
Reply

Well firstly I hadn't suffered blood clots when it was initially prescribed, nor was I on Warfarin when the majority of the strokes happened. I don't blame Warfarin for my strokes but Warfarin alone didn't stop the last one. Of course I read the contraindications leaflet so I have always been aware of the risk. I personally don't see how the gynaecologist was trying to help me when I'd already suffered hypovolemic shock once when the Northisterone was withdrawn the first time. In fact it's believed the first hypovolemic shock caused the first stroke I was aware of. Do you know how they brought the bleeding to a halt when I had hypovolemic shock, it's not a case of clamping an artery when it's coming from your uterus, no it's a very high dose of Northisterone, kind of ironic don't you think.

Negligent to prescribe Northisterone because it would be more responsible to allow me to bleed to death?

I'm happy to continue taking it and given the history Professor Hunts team are also happy for me to continue.

Be as blunt as you like, ,I'm fully aware of the risks, I've made my choice, I have my life back and I am helping myself whatever you may think.

Reply

I don't think anyone was suggesting that you came off that medication without addressing the underlying reason that would cause you to "bleed out" if you did. That is not normal even for a person with APS so the suggestion was that you addressed that cause which might allow you to stop taking a medication that clearly is a risk factor! Of course if you continually refuse to do that, Prof Hunts team are not gynaecologists and have to do a risk versus balance analysis given the situation you present them with. Sometimes continuing with the status quo forever is not the best option and it needs a brave and sensible decision, using all information and expertise available, for the long term good, something we with this disease are constantly having to face unfortunately.

Reply

Well if they knew the underlying reason maybe that would help but after changing diagnosis multiple times their only answer was a full hysterectomy. If it ain't there it can't bleed right but they lost their bottle when I had the second stroke that I was aware of and never mentioned it again. I was never on board with the hysterectomy. You did say they were negligent, it would be negligent to allow me to continue to bleed so much that raising my arms above my head made me pass out. It would be negligent to proceed with a surgery they believed I would not survive unscathed.

Professor hunts team don't need to be gynaecologists they are trying to protect my brain from further strokes. Something no one else has ever shown any interest in.

Reply

Having a full hysterectomy sounds like it was a sensible option and plenty of people who have got APS have one including me who have had a Stroke.

No matter, there is no point in continuing with this conversation, especially as it's June king someone else's question.

The point of this forum is to try to help people but it seems from your responses here and previously, your not really happy no matter what people try to offer, so let's leave it at that shall we and you just continue doing whatever it is you are happy to do.

Reply

Not everyone who has Aps has the same symptoms though and nor is surgery appropriate in all cases especially when the surgeons involved are themselves fearful of the outcome.

It certainly wasn't my intention to hijack the thread.

Reply

I had a uterine ablation procedure when I was 45, and wish I had done it sooner. Pretty easy outpatient procedure, but the results are fabulous. No more 10 day long periods and the heavy period problem was gone for me for good 👍

1 like
Reply

Lind8 So sorry I forgot to answer you question. There are a few ways to correct your problem which quite a few ladies on here seem to have experienced. It's a common question so if you want to read some of the answers put heavy bleeding or something similar in the search tab.

I had endometriosis and had a hysterectomy at 41. Personally I found it was the best thing for me and it revolutionised my life. I only wish I'd done it sooner (these days they can do it without even causing a scar). Everyone is different, your set of symptoms, medications, associated conditions and everything else thrown into the mix won't be the same as anyone else. You need to find a Dr with APS experience as someone without APS will be treated differently to a person who has it so it's important that the Dr has history in treating people like us. Good luck I hope you get it sorted soon.

1 like
Reply

Thank you, I am under APS specialist who just seem to say No to any operations or hormone things. Il keep trying till we find something we can both agree on. I just lost so much blood during my miscarriages and then had TIAs with any treatment to correct it they are over cautious now. I had to be sterilised as they didn’t think I would survive another pregnancy but I was admitted for a week for a simple key hole sterilisation operation as couldn’t stop my warfarin so they have said no more operations however minor. None of us have anything straightforward with this illness & treatments but we are all still here trying to find the best way to muddle through. Just think this site is brill nice to know I am not alone in all of this. Thanks again

1 like
Reply

I had my coil done fully anticoagulated but under a general anaesthetic so the Drs had full control over the procedure.

Good luck finding a solution that works for you x

1 like
Reply

Lind8: Maybe you need to get a new specialist, just being candid,Cindy

Reply

I know what you saying but I’ve been under same one for 30years & they do listen & look into any suggestions I discuss with them , hence why I thought I’d see if anyone had any ideas on here 😁

Reply

Perhaps just get a second opinion. You don't have to do anything but sometimes the older generation, although very experienced, are not so confident with newer procedures and techniques. It would be good just to see if they confirm what has been said before because then at least you can put your mind at rest that you have had the best advice.

1 like
Reply

You may also like...