Question for ladies who still have periods

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Regular Member

Date Joined Dec 2006
Total Posts : 102
   Posted 5/31/2008 9:25 PM (GMT -6)   
This is kind of TMI, but I thought it was worth asking since I don't see the rheumy again until the end of June, and I'll probably have another cycle before then.
Warning, if you get queasy easily about blood issues, you might not want to read this!
My last cycle was very clotty. I've had clots before, just small ones, like nickel-sized, and only on my heaviest day. This last period, I had clots nearly every time I went to the restroom. One afternoon, I passed a clot thinner than, but about the same size as a deck of cards. (I know, disgusting...sorry!) For the following hour or two, I was soaking a super tampon every twenty minutes. Thankfully, that tapered off, and I never saw another clot anywhere near that size. But, I even had a couple of dime-sized clots on my very last day, something that has never happened. (Having that huge clot has never happened before, either...not even when I miscarried a few times.)
I remember testing positive several years ago, with another rheumy, for anticardiolipin (sp?) antibodies, and antiphospholipid syndrome or whatever that "sticky blood" thing is called. As far as I know, my current doctor has never tested for that, or if she has, she hasn't said anything about it.
Could that be increasing and causing the clotting? I know that only a doctor will know for sure, but there's so much information here...I just thought it was worth asking if any other ladies have experienced something like this. I know that I'm often borderline anemic on my bloodwork, and probably would be anemic if anyone tested me now after this period from hell! LOL
Input/insight/etc. appreciated. Also, would you make an appointment with your gyno? I love my OBGYN but I find that she's pretty clueless when it comes to the autoimmune stuff.
Wife, writer, artist, homeschooling mom to 2 wonderful boys
Lupus (dx May '04), arthritis, PCOS, being tested for vasculitis and Behcet's
Now taking: plaquenil, limbrel, metformin XR, ibuprofen and the occasional percoset for pain

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Date Joined Sep 2005
Total Posts : 2573
   Posted 5/31/2008 9:41 PM (GMT -6)   
I know that clots are not uncommon during your period, I have had them off and on but not really since I began baby asprin every day. If you tested positive for the anticardiolipin antibodies even once you should be on baby asprin as a precaution since the tests can fluctuate. If your current rheumy has your old records that should be enough to put you on baby asprin. If not make him/her aware and be sure you get retested and for antiphospholipid antibodies and the lupus anticoglutent. I hope that someone with more experience with clotting during periods will come along to help you. My periods were very irregular with years at a time with no period until my lupus came under control.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

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Date Joined Oct 2004
Total Posts : 2244
   Posted 5/31/2008 9:44 PM (GMT -6)   
My periods have always been the same until here recently and they've gone really wacky. One month it lasted about 2 days then the next month it was heavy for several days (more than usual) with a lot of clots and pain. This month it was 2 days, no cramps, tenderness, etc. Very weird. I will mention it to my rhuemy on the 9th and let you know what she says. Keep us updated and let us know what your doc says too. Take care

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)

Post Edited (jhmom) : 5/31/2008 8:47:14 PM (GMT-6)

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Date Joined May 2005
Total Posts : 7720
   Posted 5/31/2008 10:03 PM (GMT -6)   
I don't think the irregularities you've' mentioned are at all unusual with lupus. I've had similar changes since being dx several years ago, and have also had missed periods, extra periods, prolonged periods....about every variation you can think of....was a very very 28 day super regular person before lupus. Not sure if it's the dx or the meds, but something certainly makes a they always want to toss in the age factor if they can (my age being 45-50 for all this).

That said, I would make an appointment with a gyno. Otherwise you will always wonder, as these other doctors really don't know. I made my gyn appt when some of the weirdness first started happening, and I'm glad I did even though everything was found to be okay.

The general consensus, at least as I understand it, is that the interactions between all these issues are just vague enough that there is no "final answer", but that it's good to at least have some baseline tests in case things continue to get odder as time passes.

More fun, huh?

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
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Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 6/1/2008 9:48 AM (GMT -6)   
Hi Kari,
It looks like you're getting advice that is on both ends of the spectrum. I have to agree with Redrose. I have the anticardiolipn and antiphospholipid syndromes.  I'm actually on more than just aspirin.  I have to take Warfarin to thin my blood.  I've been told that clots of any size, if you are positive for these syndromes, is not good. I'm to watch my periods as well and let my doctors know of any clots.  It can be a sign that the syndromes are more active. When you're not hypercoaguable (on blood thinners), your risk of a clot anywhere in the body is very high.  Strokes, heart attacks, are what the big concern is.
If you're passing clots the size of a deck of cards, you need to see your rheumy or pcp.  Don't let another cycle come and go before seeing someone.
Oh, yes, everyone passes clots from time to time, but the fact you are positive for these syndromes changes everything.
I hope this helps. From one thick, sticky blood lupin to another!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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Date Joined Jul 2005
Total Posts : 5403
   Posted 6/1/2008 7:50 PM (GMT -6)   
I would get in to see someone before your rheumy appointment. That size clot is not normal and neither is soaking through tampons that fast. I remember reading somewhere that if you are soaking through them that quickly, you need to get to the doctor.

Take care and let us know what you find out.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Regular Member

Date Joined Dec 2006
Total Posts : 102
   Posted 6/1/2008 8:54 PM (GMT -6)   
Thanks for all the input, ladies. Now I'm scared! LOL

I will call the rheumy tomorrow. I hate calling again...I have been so high-maintenance between appointments this time. But I've never done that before; usually they never hear from me. So I guess it's just my turn to be the squeaky wheel. I'll probably go ahead and call the gyno, too.

Thanks again for the input!
Wife, writer, artist, homeschooling mom to 2 wonderful boys
Lupus (dx May '04), arthritis, PCOS, being tested for vasculitis and Behcet's
Now taking: plaquenil, limbrel, metformin XR, ibuprofen and the occasional percoset for pain

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