Pulmonary Embolism Support Group

I can't say for sure about your finger/hand numbness, but is it possible you slept on it wrong? I get a compressed nerve in my elbow that makes my hand go numb from my ring to pinky finger, and that comes and goes depending on if I slouch at the computer all day or not, Just an idea.
What I can tell you from my monthly experience, is that my cramps are nowhere NEAR what they used to be, before warfarin. While the flow is heavier, the duration is the same - 3 days for me. But my cramps were horrible prior to warfarin, and now, if I get cramps at all, they are nothing by comparison. I do attribute this to warfarin, although why warfarin would have any bearing on cramps is beyond me.
You can ask your doc about that uterin ablation - I don't know if they can do it while your on warfarin or if they'd take you off it to have that procedure, and bridge with lovenox. Also could be fibroids, as that can cause heavy bleeding - either way you'd be wise to investigate some kind of treatment as it already affects the quality of your life.

I went off the pill after the PE. I went from a day long, very light period to a 5 day period with a bit more bleeding, but nothing crazy.

Eventually, I had a copper IUD inserted which does make you bleed more. My periods became a bit heavier and it lasts about 7 days when I'm regular. I also get more spotting in between periods.

I'm 44 years old and starting to experience perimenapause so I don't really know which way is up right now with my cycle some months. A couple of months ago, I had my period for almost a month.

I'd suggest getting an OBGYN if you don't have one already and discussing all your options as well as your heavy periods and pain. You may have something going on that is completely unrelated to warfarin.

As far as the numb hands, I'm not sure. Are you keeping well hydrated?

Two days after I got out of the hospital I ended up back in ER because my right arm was numb/tingly from the shoulder to my fingers. They couldn't find any reason for it and it finally went away the next morning. But it comes back as well as some numbness in the right side of my face. It's very mild but it's there. They did a brain scan when I was in ER and it was clear so while I'm a little anxious about it being a stroke I try not to think about it. I will be asking my specialist about it when I finally get to see him in two weeks.

Hi Elizabeth,

Numbness in hands arms can be caused by a number of things, like neck/shoulder pain/issues or even carpal tunnel syndrome which I have. I have not noticed any increase in numbness problems since starting Warfarin. So no clue if warfarin related.

For years I have suffered with period problems just as you describe and being ruled by them monthly including being housebound etc. After some investigation to discover it wasn't a result of something nasty, I tried a drug that is used to decrease the flow. Sadly it made no difference, howver, a couple of doctor friends told me to ask about 'Mirena' as they themselves had it fitted. I then had the mirena coil fitted and I have never looked back, after a couple of light shows, I for the last year and a half have had no period's. *yay*. New lease of life!

However, since taking warfarin I have twice experienced very light shows for a couple of days. The first within days of taking it and now again, after a couple of weeks, this time accompanied by back pain:-( So that is why I think it is somehow related to taking warfarin. I intend on asking if it's a sign my INR has altered..?? I have been spoilt not having a period for so long, but have to say what I am experiencing now is not in anyway like previous, so I can't complain to much. Though still intend seeking advice.

Hope sharing my experience is helpful, I think I echo other posts who strongly suggest you discuss both matters with your doctor. I hope reading about others experiences provide food for thought on this subject. Don't suffer in silence... seek advice.

Also, thank you for being brave to post about a topic knowing it is likely to be read about by our male peers. I know it is a topic women tend to talk about in private with each other, so hat's off to you. It was the first posting I read this evening because I to, am looking for answers:-) So because of you're posting you have highlighted to me that it seems to be a common thread and I am not alone with concerns/questions

Kindest regards Weaze:-)

i'm in a similar problem. I took high doses of estrogen prior to my PE for years to stop heavy uterine bleeding that would last weeks or months at a time. Also kept me house bound and in agony. I tried the copper T IUD, and the mirena IUD twice prior to PE and hated them all. Terrible pain, bleeding and side effects. I don't know if warfarin causes a heavier flow, so far we are trying to prevent mine with progesterone only pill, because my levels are very high and unstabilized.I was told blood thinners will make your period heavier, and if it's excessive to contact my doctor. they also suggested hysterectomy which i won't do while on warfarin. I definitely suggested you work with your OBGYN and try different ideas if it becomes very troublesome. good luck, and you're not alone.

Yes ElizabethQ I can totally empathise. Since I've been on warfarin my periods have been hell. Quite franky I fear for my furniture! IThankfully I never likedwhite jeans anyway. Black has always been my signature colour.

Anyway joking aside, My INR also drops before it starts too.

My doctor had suggested a coil too, but when read the literature there were some orrying bis about clots - plus it could make migraines with auras worse as well. I've always suffered with migraines and nausea - since I was 11 years old - sometimes losing up to two days at a time with extreme sickness. Now I am now debating whether extreme nausea or ecessive bleeding is better. At least I can function (sort of) wiith the bleeding.

Not sure if this is helpful?

beccyt, that's interesting that your INR drops before....so does mine!

Elizabeth, I've had a change in my cycles, but not in a way I'd expected...every time in the past that I'd go off the pill, I would never get a period until I was taking it again. I have PCOS and for 12 years the only ones I had were the withdrawal bleeds from taking the week off the pill every 1 or 2 months.

Well, I stopped taking the pill after my PE, and wierdly enough I now get them naturally, every month to the day. It's been 3 months of that now, and it's so strange to me, since usually my progesterone drops off the map and I pretty much feel menopausal (I'm only 30).

I don't think you need to worry, just be aware. If you have heavy bleeds I don't think warfarin will make them much worse. Endometrial ablasion can help however the procedure can be riskier on anti-coagulants. So see how the first one goes, and don't hesitate to contact your doc if anything seems different or worse. Mine have been very manageable, and regular! for the first time since I was 18.

Take care,
Marit

Hi all,

Haven't posted in a while. Just struggling with severe fatigue and still having chest (pleuratic?) pain. Some days I feel almost normal but lately it seems as if I'm getting worse, not better. Sorry to be so whiney, but lately I've been so tired I almost want to cry. Also running low grade fever since last week. Don't know what that's about. Seeing dr tomorrow.

Unfortunately he didn't have any real answers for me regarding my previous post above. Just sort of wait and see what happens regarding the effect of the medication on my period, and if it's really bad I'll see my GYN. Still having the thumb numbness, which is just annoying and weird. I guess it could be from sleeping wrong or something - it just seems odd that it happened at the same time as the PE diagnosis and has continued to be numb all this time.

I think I'm going to see if the dr will order another CT scan just to make sure everything's ok (don't know if he will actually do it or not). I know pain post-PE can be expected but I've also been having sharp pains in addition to the regular dull pain, and some chest pain. Don't know if this is normal at all. And of course the crushing fatigue. Seriously, when does this get better?

Hope everyone else is doing ok.

E.

Hi Elizabeth~
I am new here but I can tell you my experience. I had a heavy flow before my embolism and since they couldn't find any reason for the throw of the clot after doing numerous tests. It has been decided that the clot came from my pelvic region....I have cysts to boot. With being on Warfarin my periods have been super heavy for about two days...pads and tampons. You may as well place me in a zip lock bag. I have also had horrible back pain...almost like back labor before birth. Come the end of February I am hoping to be off warfarin and have a total hysterectomy. I have to be off the warfarin for two weeks in order to do the surgery.....I am iron dependant as well which stinks since I take the liquid kind as the others so upset my stomach.
As far as the "excessive bleeding" goes I would think that if your period lasts longer than normal you should contact your pcp. Mine asks me every visit how the bleeding is...even if I get bloody noses.
So far I am not having problems clotting....are you going in for regular blood tests for your INR? I go in every week. That keeps the pcp on top of it.
Hang in there!