TOPIC:

Okay,

So of course my monthly cycle has gone absolutely crazy, and it's a LOT of blood loss (insanely large clots and going through more than an OB ultra an hour) and I'm getting a little freaked out. This is reminding me of the time at the beginning of the year when I lost so much that I required a transfusion.

I'm going in for my weekly labs tomorrow at my hematologist's office, but I won't actually be seeing the doctor. If my counts are crazy low I just wanted to get a quick summary from someone about what my options are to stop this monthly bleed ASAP. I think it's too late to spike some prednisone and wait for it to kick in (it usually takes me at least a day and a half (or a bit longer) to get the counts to start going up from that). Someone had mentioned trans acid, is that fast acting if it's something that gets recommended?

Thanks for the help. Still no word on when I'll be able to take the next step with the Promacta.... arghhhhh... I think my recent steroid bout crashed the numbers lower than their usual, but I'll see tomorrow.

I've used Provera in a pinch. I was bleeding like that and I couldn't keep up with it. I got Provera and it stopped within a day. I only used it until counts went up.

Are you using tampons? I'd switch to pads for now, at least at night. A friend of mine got toxic shock syndrome and nearly died. The reason she got toxic shock was from wearing tampons constantly and changing them too often (too much activity can cause small tears that allow bacteria to enter). Not changing enough can also cause it.

I'm a worry wart and like to err on the side of caution.

Thanks for the suggestion. I'll find out about the Provera tomorrow. I am using tampons because I don't think it would be possible to manage this flow without them. The largest tampon available out there that I know of is the OB ultra and I go through that so quickly plus a full overnight sized pad in under an hour at the worst flow rate. The combination of the two is the only thing that barely manages this bleeding with frequent changes. I can't conceive of managing this flow with just pads. Thanks for the warning though, always good to be aware of what can happen.

I actually also have a diva cup and use that on occasion, but it also fills so quickly and is more of a pain to empty/clean/reinsert. *sigh*

Thanks again for the Provera tip!

If you are done having children, you may want to consider an endometrial ablation.

Yes, it can be hard to manage. Hopefully you get help soon. I was only using pads when it happened to me. I was in the bathroom every 1/2 hour at work trying to keep up with it. One evening we had people over and I bled through onto the couch. Sticky situation and hard to fix without anyone noticing. My husband diverted everyone to another room while I tried to clean up.

Let us know how it goes today.

tamar wrote:

If you are done having children, you may want to consider an endometrial ablation.

I looked into it some, but the idea of having other birth control that is 100% good (doesn't exist) so that you don't end up with implantation in the uterus AFTER having the procedure made me say naaaah, not at the moment.

I'm sure it's rare that you get that situation, but still... I'm working towards getting Promacta (still waiting, have to bug the business side people in the hematologist's office since I'm not hearing of any progress on the approval/insurance side of things) and then I'm just going to treat my counts and not mess around with anything on the gyno side for now.

Thanks for the suggestion though.

Sandi wrote:

Yes, it can be hard to manage. Hopefully you get help soon. I was only using pads when it happened to me. I was in the bathroom every 1/2 hour at work trying to keep up with it. One evening we had people over and I bled through onto the couch. Sticky situation and hard to fix without anyone noticing. My husband diverted everyone to another room while I tried to clean up.

Let us know how it goes today.

Ugh, it's the worst. I'm sure you can laugh about it now, but that must have been really tough at the time! With this bleeding nothing short of a huge towel would keep me from having issues everywhere sans tampon.

So my counts were 25K today. Not so wretched (I'd been on 5mg pred for the last few days), but not high enough to stop this bleed. My husband and I were really close to making an ER run in the middle of the night prior to today's labs. The bleeding was just so bad and it was keeping me up all of the night after 1AM. I still didn't feel as light headed as I had in the past, but in the middle of the night it can be hard not to freak out a bit.

My hematologist was nice and calm (I'm really getting to like her) and just bumped me up to 40mg Prednisone again and said that my hemoglobin wasn't in the red/danger zone yet for a transfusion, so my limited response to the steroid should be enough to get the count high enough to end this bleed in enough time that I don't have to go to extreme measures to fix things.

*sigh* so back on the 40mg Pred for the moment, but I'm going to titrate back on down once the bleeding quits. My cycle doesn't come back for me once it stops (at least thus far!), so this should just be for a few days. Hello insomnia my old friend... I'm sure I'll be seeing you again...

Though I'll take the pred crazies over hospital interventions (they never want to let you go once they get you) and transfusions. I'm feeling slightly more positive since I managed to lose a bit of weight after I took my pred dosage down over the last two weeks. (still the lovely cushingoid chin/face ughhhh! hate it!) I've been really focusing in on my diet and upping the exercise to try to get myself in a better position to manage all this medical stuff.

Thanks for helping me as I'm getting smacked with the reality that I'm definitely not in any kinda remission over here and having to readjust my expectations of dealing with this

No mention of Tranexamic acid then ?

Some women choose to stay on the birth control pill constantly until their counts improve. You just start the new cycle of pills on day 22 instead of taking a week off. It worked for my ITP person.

I bled heavily non-stop for three years after my daughter was born. They finally diagnosed the itp when I went in to have an ablation. After all the treatments and finally a spleenectomy, my counts went up but the bleeding still remained heavy. I finally had the ablation and it was awesome. Only mild spotting for periods since then.

So this post is super old but thought I'd share what stops my bleeding when it gets out of control megesterol when I have a period that won't stop I end up going to the hospital telling them I need ivig and megesterol bleeding slows down within a day