Bleeding and wafarin

[Lind8]

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

[Tucson]

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

[Lind8 in reply to Tucson]

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

[Yllek in reply to Lind8]

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

[Lind8 in reply to Yllek]

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

[Yllek in reply to Lind8]

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

[Tucson]

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.

[lupus-support1 Administrator in reply to Tucson]

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

[Tucson]

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.

[Tbunny1]

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 👍

[Lind8]

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

[Yllek in reply to Lind8]

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

[Wittycjt in reply to Lind8]

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

[Lind8 in reply to Wittycjt]

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 😁

[Tucson]

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.

[Tucson]

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.

[Tucson]

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.