Really heavy periods

Lorie85 wrote:

I'm on Day 7 of a "period" I have been taking my birth control (yaz) and tossing the placebos and also taking progesterone 2 times daily. My brilliant Dr recommended that i taper the progesterone down to 1 pill a day. I told her at 3k I would bleed and she goes, "whats a little bleeding, if you dont want to see it put in a tampon" . So against my bestter judgement I tapered to 1 pill and the yaz and viola! I go from 3 k no active bleeding to 3 K very heavy painflul period! I had an accident today at work had to sit until everyone in the class left, because i knew the chair was dirty . Fortunatly i've been wearing black bottoms everyday so it was my little secret.

Gyn says I shouldnt have depo provera because i have no children and she dosent want to give it to me ( in addition to my counts being too low to have an intra muscular injection).

Sandi could you please tell me more about the Provera pill?

Lorie, I was diagnosed because of abnormal vaginal bleeding and was prescribed Yaz and Yasmin after I complained Yaz was too expensive, just to found out Yazmin is as expensive. The truth is that with both pills I still had spotting between periods and somewhat heavy menses. Then I switched to Ortho Tri-Cyclen, which I had used for years before having my daughter and forgoing birth control and it's been wonderful. No spotting and very light periods.

I think your Gyn is concerned because some women with Depo Provera have had problem getting pregnant after being on it for a while.

Right now I'm at the hospital and even though I'm supposed to be at the end or have finished my period, I'm still slightly bleeding, but I guess that's to be expected with a count of 2k.

Thanks Jey! Your so lucky you were able to have a baby. Thats something i wonder about with all these hormones i have to take to control my bleeding. It seems like if I dont take anything the bleeding will never stop. I find Yaz expensive too in total i spend like 60-70 USD on these pills just to keep from bleeding . Fortunately i'm at 2k with no period bleed, no mouth bleed, no nose bleeds, and minor peticial spots (from bar bones and stuff)so i'm feeling blessed.

Lorie85 wrote:

Thanks Jey! Your so lucky you were able to have a baby. Thats something i wonder about with all these hormones i have to take to control my bleeding. It seems like if I dont take anything the bleeding will never stop. I find Yaz expensive too in total i spend like 60-70 USD on these pills just to keep from bleeding . Fortunately i'm at 2k with no period bleed, no mouth bleed, no nose bleeds, and minor peticial spots (from bar bones and stuff)so i'm feeling blessed.

I was indeed very blessed to be able to have a baby. I have POS and was told it would be very difficult for me to ever conceive, but after ten years on the pill I stopped then and some months later I was pregnant. Of course that was way before the ITP. I do understand your feelings. I was going to try to have a baby last year and then I was diagnosed, so that's out of the question for now.

Hope your counts go up soon!

Thanks, Great count to you too!

I was on pred for 5 months and it made no difference to my periods really - they've always been awful! I don't bleed too much (but the blood is very viscous when it comes out), but the pain is awful and i have been known to black out it's been that bad - i pretty much have to stay at home with codeine and a hot water bottle for 2 days, hence i only have them every 3 or 4 months. i usually work out when i've got a free weekend with nothing planned and stop taking my pill a couple of days before, although timing it for the pain to fall over the weekend can be a bit hit and miss. i'm on ovranette and have been on it for 9 years - i did switch once, but switched back after one cycle as cilest gave me terrible mood swings and made me sick.

I am a 39 yr old diagnoised about 8 yrs ago. I noticed a change in my period after I came off the steroids. It got so bad that I was almost hospitalized after I lost a liter of blood. My doctor just put me on a high dose of steriods to stop the bleeding but I would really love to know if anyone has any suggestions of how to stop the long heavy bleeding. *PLEASE HELP* :S

You can try the deprovin shots, they have helped some of us. You didn't mention if your count was really low, which can contribute. You may also want to see your Gyn and have an ultrasound to see if you have fibriods and have blood work done for Thyroid level (hypothyroidism can contribute to heavy menses).

on one occaision I had heavy bleeding in that every time I stood up I had to run to the loo as well as one could on an intravenous drip and urine be full of blood going through. This wasn't my periods but what they did do was put me on some hormone tablet which didn't stop the urine bleeds but probably protected me internally somehow. I was quite anaemic that time and they gave me a blood transfusion before sending me home. They learned with me that once platelets go up then everything else that going off course recovers

I would speak to your haemo if I were you and they can help hopefully. Its important to tell them anyways so they can understand what is happening for you

smokeb4fire2007 wrote:

I am a 39 yr old diagnoised about 8 yrs ago. I noticed a change in my period after I came off the steroids. It got so bad that I was almost hospitalized after I lost a liter of blood. My doctor just put me on a high dose of steriods to stop the bleeding but I would really love to know if anyone has any suggestions of how to stop the long heavy bleeding. *PLEASE HELP* :S

Hi,

I have very heavy periods, too. For two weeks now I'm taking the birth control pill and we (me and my Gyn) want to try to "establish" a long-term cycle, so that I will have my period only every 4 or 5 months. I hope this will work...

I've been on Progesterone ( Called Provera in the US) sucessfully for the last 4 months. on occasion i have break through bleeds but i am often pad free for weeks at a time. The catch is if you miss one dose I find i have heavy spotting and if i miss two or more i will have a full fledge bleed. So you just have to keep taking it!

At first I didnt have any period at all...which was due to the high dose of steroids I was put on. I saw it as a blessing but then realized that not having a period at all can lead to a higher risk of cancer. After about 2 years I started getting my period again and I wasnt the least bit happy about it! In the last 6 months my platelets have regularly been under 10k so every menstrual cycle is heavy and painful. The first two times I was hospitalized for like a week each time. I have similar stories to the ones written on here about leaks and other mishaps. It is very hard to go about your day with such a nuisance of a problem! My doc has me on premarin to stop the bleeding but it takes a good 5 days to stop it. Has anyone else been on premarin? I feel like an emotional roller coaster gone bad!! I cry for no reason one minute, laugh the next...I also notice that my platelets get lower when I have my period. My doc said not to use tampons, which I can see why...it could make the bleeding worse but I have to say I can not stand using pads!!!!!!!!

Hi, just wanted to mention that I did have a similar problem. It started when I was about 29 or 30 and I thought it was just heavy periods as well, but I found a really good gyno and turned out to be endometriosis, this can be immune system related so may be worth getting checked though.

I can understand your frustration at this though, it sure puts limits on day to day things. I have never had premarin with me they used an implant called zoladex and it stops your periods completely, you have it once a month.

Let me know if you want any more info, good luck

My son's doctor prescribed to him a blood coagulant every time he has heavy nose bleeds. It's called, Hemostan but the generic name is Tranexamic Acid. Our Hem told us she also give it for women with cases of heavy periods.

Might ant to look into it, hth

my periods seem to go light and almost non existent compared to inbetween times. I think I have the heavier perods - for me that is leading up to an itp episode perhaps but even then nothing heavy, just heavy for me

why do i seem so different to everyone on here in their experiences:blush: . My ITP lasts about a week of actual low platelets, though this time even shorter I believe.... I hardly have any issues with it and am post splenectomy.

am still convinced that is why mine may be more idiopathic than immune because I don't get all what been reported on here.... just mine is glorified slightly as I have to travel to a major city hospital for any treatment though my local hospital can and has coped but werent happy. the fuss around the itp is more problematic than the itp itself. people who have a cold are more poorly etc in reality for me.

ah well it is a good thing I think that okay I got low counts and sometimes bleed with it etc but last time didn't so i was okay to live a normal life whilst the technical medical words confuse people. just got to say blood..... though am always cheerful when I have to inform people because i don't want to make it more than it isn't for me.

prednisolone has a few minor ill effects but as soon as i stop them they will recover.....

but seriously I wish everyone well but caution about having spleens whipped out. mine was done within six weeks but my count wouldn't go up or would do to one or two if i was lucky i can remember one doc saying.... so it was the best option in reality for me - though have suffered through it - mainly through proper lack of information and care but think on track now there....

Well I have had my period 3 times in the last 4 weeks with each time being very heavy. I have been taking the premarin so yeah thats alot of premarin!! My Dr. seems to think what I am taking is good enough so on Monday I will call my gyne and see what kind of input she will have. Thanks everyone who has posted what they or someone they know take, Im writing them all down and Im going to ask my Dr.s

Think you are doing the right thing going to gyno, I wouldn't call it a normal period if you have had it three times in four weeks.

I have really heavy periods too...It never occured to me there could be a link...perhaps this is something I should discuss further with my doctors??

I had none stop periods about three years ago and I was on premarin for about a month. She put me on Birth Control after that. My uterine wall was too thick which was causing the non-stop periods. After that, the wall thinned out and I was o.k. until I had an ovarian cyst which disappeared with another changed with a different birth control pill. I only took the premarin for one round on ethical principals. Have you had a uterian ultrasound? They suck big time, but might expose the problem.

Oh, and through all of this my platelets were in the 100's (NOW, I'm having problems with the ITP, LOL)

Also have had VERY heavy periods when platelets are below 10

Hi everyone!

I've had my ITP when I was 12. I've undergone almost all medications: steroids, immunosuppressants, ivig, chemotherapy, and loads or herbal, alternative medicine and the last one I had two years ago is spleenectomy.

It had always been my agony also every month when I have my periods. But I suggest that you may consult a good ob gynecologists who can help you take the right hormonal pills or treatments for your menstruation. When I am having a very heavy menstruation, my doctors prescribe me of Hemosthan (I'm not sure if it is legally prescripted in other countries, I am from the Philippines).
You must also keep on guard with your Reproductive organs as I had endometriosis (a side effect of itp) and even had one of my ovaries and fallopian tube removed.

I know every body responds differently to every treatment. But for me having my spleenectomy somehow reduced the problem with my heavy menses. And above anything else, put you faith to God, eat healthy and live healthy, have fun as much as you could, because aside from the bruises and pettichae, we are still normal lovable persons.

Hope to be of help to you.

Abigael

I used to have extremely heavy periods, went to the doctor and they found a mass the size of a grapefruit which turned out to be endometriosis. That was removed along with an ovary. Periods never changed and 6 months later it's back on the other side. My OBGYN suggested an IUD, he didn't want to remove the endometriosis as the other ovary would most likely be removed as well and I still may have a slight chance that I could have children. Don't know if it was the endometriosis that caused the heavy periods but since the IUD they are pretty much nonexistant (insert knock on wood smiley face here). It's been 2 years now.

I wasn't aware that endometriosis can be a side effect of the ITP but I always wondered. If I didn't have very low platelets could it have been the size of a pea instead of a grapefruit (insert dunno smiley face here).

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.