Really heavy periods

Endometriosis isn't a side effect of ITP - doesn't have anything to do with it. However, Danazol can be used to treat both.

Not sure what to do...I have extrememly heavy periods as many people have mentioned. My last one was so bad I felt very dizzy and like I was going to faint all day. I have actually fainted from blood loss from a period before (my first period after having my son) but it was actually my hemoglobin levels that were low at that time, not my platelets. I went to school and got my bachelor's in criminal justice to do probation, which I no longer can do because I won't be passed for a medical physical . I tried doing substitute teaching, but anytime my period comes along I end up sick or it's way to heavy to even go anywhere and have to ignore calls for work for at least 3 days. I don't know what employer would deal with this. If I got a permenant full time job, not sure how I would even last with all the days I would be absent. My doctor said birth control could help, but also lower my platelets...sounds like a lose/lose to me...plus aren't too fond of birth control and its side effects. Any suggestions? And those of you who suck it up and work through the rough periods...how do you manage? I can't see an employer allowing me to go to the bathroom 2x every hour!

That's odd because it's well known that the pill, as we Brits simply call it, can cause clotting but I've not heard of it lowering the platelet count. I'd try it and see what happens.

Charlotte - I was in that situation with work and heavy periods. I did run into the bathroom constantly....no choice. I used Provera to stop periods and it worked. It did not lower platelets. Many people here have used it for that purpose. When counts went up, I stopped Provera.

Ok discussed periods with my gyn who recommended Mirena iud. It's being placed hopefully next month

Hi, am new to this group. Here is my itp journey. I have had itp from 14 years. I came to know when i got my first periods at age of 13 years. It was heavy uncontrol continues for 15days. Then my doctor prescribed me pills to stop bleeding. Then it stopped. I have had treatments for itp with dapsone ,steriods, dexa, celcept, rituximab, spleenectomy those all was for temporary rise nothing put me in remmission. For periods i tried depro provera, trenexa but nothing was much effective. Only progesterone hormones (primolut n ) is effective. Am still using it to stop bleeding. Confusion is that even with high counts my periods are heavy and uncontrol. So my hemo refer me to gynae that is is related to gynae prob and gynae did an ultrasound only and sent back to hemo that its related to itp. My platelets count always ranges btw 35-45 without any other bleeding symptoms except heavy periods. Now am married and i want to get pregnant so am worried with all these probs, my questions are

Has anyone had to get a blood transfusion from period bleeding? My 14-year-old was just diagnosed with Ito while on her period. She was in the hospital a week and had to get 6 units of blood. Is this common with itp? They started her on birth control pills. It has been 3 weeks, and she is now having breakthrough spotting.

Yep, I have had this happen, 3 units of blood, iron infusion, plasma. Only happened once! That's a lot to go through for a 14 year old. I hope it's a once off for her.

Thanks for the response. Yes, it was. She had to be airlifted to a children's hospital. Very scary for us. Her platelets went up into the 270s after an IVIG. It is now a little over two weeks since we left the hospital and her check yesterday was 105,000. We go for our hematology follow-up on Friday.

My period has been pretty average to light this month, which is great. My counts are usually normal-ish with some dips here and there. However, today I passed a huge clot. Very abnormal for me. About the size of a half dollar. Is this normal for lower counts? My bleeding isn't bad at all, just that huge clot. I'm a little on edge because I'm at a slightly higher risk for clots as well.

Hi Gellie, I know this was ages ago but I just joined (and recently diagnosed) and thought I'd share a similar experience that I had to your daughter.
I'm 16 and hadn't even had my period that long but during February this year I had a period that lasted over two weeks and within the last week I lost two thirds of my blood and my GP rung me an ambulance late in the evening the next day after seeing my low Haemoglobin and Platelet counts. I was put on fluids which revealed that my haemoglobin was 56 (should be around 120-140) due to the flooding and my platelets were in the 20s. I was started on 5mg of Norethisterone 3 times a day (still continuing this) and took Tranexamic acid for a week then received a blood transfusion. Since then my platelet count has been around 12 but last weekend I experienced sudden breakthrough bleeding as my count dropped to 7 (lowest I've experienced) and I spent a few hours in the hospital and again took Tranexamic acid until it stopped. I was also prescribed some to bring home incase it happens again to save me from going back in so I would definitely recommend you ask about being allowed to have some of that if it's available where you are.
Sorry it's long but I hope this helps and that things get better for her.