Hi ladies, I am less than a month since diagnosis and I was on my period when I was hospitalized. My periods were always erratic which was the reason that I was on a hormone birth control. I am going to see my GYN on Friday, what do you suggest that I ask her in terms of birth control?

Ament , I think it's impossible to say if that's normal or not considering that periods vary woman to woman whether or not you're on warfarin, and individually, period duration and flow can change for a woman over time.

MATT6479, I'd just ask which bc your OB recommends for someone with a clotting history, the pros and cons of each, and go from there.

@MAT6479

I would also make a point to do your own research on the whatever your OB/GYN recommends. They obviously don't have time to go over all the small print with your in a 15-minute appointment, so do your own research and well and make sure you're comfortable with whatever option is suggested, especially if it has hormones in it (progestrone is usually one considered "safe" for clotters, but there is some evidence that it can also cause clots). Everyone has their own comfort levels on these things, so ultimately it'll be up to you to choose what you're comfortable with.

I am 3 1/2 months past diagnosis. Was taken off by pill immediately. Also had stage 4 endometriosis, so being on warfarin made my period way worse. Gyne wanted to put I'D in, and refused to do a hysterectomy. Found a wonderful surgeon who specializes in hard cases and I am now 4 weeks post op. Best thing I ever did was get a second opinion.

I have never had very regular periods. meaning not 28 days on the dot, like some I know. but now on Warfarin I have been skipping every other month. I thought maybe it is diluting my hormones.

Smiling 1970. so what was the treatment from your 2nd opinion?

I got a second opinion regarding the hysterectomy because my regular gyne doc refused to do it, saying it would have to be abdominal surgery, cutting through muscle. She wasn't willing to take any risk with me. So, I did my research and found a doctor who performed the host via laparoscopy. One tiny incision by belly button, and that was it. I was lucky I found this doctor. I didn't appreciate how miserable I was feeling until I felt better. I also have MS, so it really was a complicated mess. They worked so well with me though regarding my blood, and took every measure to prevent another clot.

Sorry...... performed the HYST, not host.

Interesting that people are getting an IUD to stop their periods. I have a Mirena and have been on mine for a week and a half....

As you may have seen in my previous responses, my periods became monstrous after I started taking Warfarin. My gyno's suggestion to put in an IUD. It's interesting to hear people talking about having heavy periods with an IUD. She said that for 80% of women with the Mirena IUD, their periods stopped after 6 months, and for the remaining 20%, their periods were a lot lighter. Mine has been in for just over a month, and it already seems to be helping. I had very light spotting for the first couple of weeks and then slightly heavier spotting, which I think was my period. Since then, I've had no spotting. I'm not sure what will happen next month. The procedure was painful, and I've experienced periodic cramping since then, but she said that will eventually stop.

I think it may depend on the type of IUD.

The Mirena has hormones in it and I think it tends to make your periods lighter. Not everyone who has clotted is comfortable using an IUD with hormones in it.

The copper IUD is the one I used because it has no hormones in it. However, the copper IUD will tend to make your periods heavier, as it did mine.

This is really irritating to me regarding IUD's, and now I want to pick up the phone and really chew out my former gyne doc. SHE refused to consider a hysterectomy, but wanted to put in an IUD. She KNEW all of my problems with endometriosis but the IUD was still her answer. So no matter which type of IUD you have, you are still bleeding monthly, correct?
I was extremely lucky that I found a good surgeon who not only worked with me regarding the fear of another clot, but also worked hand in hand with my PCP. I had very little bleeding during surgery and afterwards and the only incision was less than a half an inch by my belly button. For those that are done having children, this might be an option for you IF it can be done via a laparoscopy.

I'm 1 yr out (almost to the day) from from my PE and had an IUD at the time. I was advised by GP to remove it and did shortly after PE. He had concerns that even though low dose... hormones from IUD could have contributed to PE. My hematologist and GYN later dispelled that. I then began to get a period which was the heaviest and messiest I've ever experienced. I also experienced a lot of discomfort, cramping and exhaustion. After a few months of that and a visit to a Hematologist I was advised that it was safe for me to get an IUD after all...my hematologist actually receommended it to combat the heavy bleeding. Before warfarin I hardly got any period..just a little spotting. Now, on warfarin, with IUD I do get a light, totally manageable period. I'm so grateful to have the IUD. I'm told that I'll be on warfarin long-term so the thought of monstrous, messy, debilitating periods until menopause was depressing. Good Luck to you!

Yeah, I've had my IUD in for less than 2 months, and I can already see a huge difference. I had some very light spotting for a few weeks, then some slightly heavier spotting, which might have been my period, and then nothing for a few weeks, and then some very light spotting again, which might be another period. I was told it would take 6 months to work, but it's already working. I do have some occasional cramping, but my GYN said that should go away within 6 months. The cramping is uncomfortable, but it's totally worth it if it'll go away eventually. I'm really glad I did this. I have a bunch of pads that I bought when they were on sale, but I may not even need them for 5 years. Good deal.

The thing with doctor recommendations... they're not all going to be exactly the same on an array of topics so I'd not stew about that. There is a risk for blood clots with Mirena. It's not as prevalent as say a estrogen based birth control, but there's a risk none the less, and so I can see why some docs wouldn't want you on it after having had a blood clot. I can also see doctors saying the risk is so so so low that having a Mirena IUD is not going to be a problem, even if you do have a clotting history and particularly if you are going to be on warfarin while it's inserted. But just no the reality is that some women have clotted from progesterone based birth control.

So it's not a matter of what you don't use or do use. It's a matter of getting information, discussing it with your doc, and making an informed decision for yourself on what you feel comfortable taking. If your doctor is in disagreement with what you want to do, I'd ask WHY and then if you're not satisfied with the answer find another doctor.

My OBGYN was ok with the Mirena, but me, not so much. Massive
PEs in both lungs and two separate DVTs... thanks but oh, hell no. But again, all my choice. Do what makes sense to you for you.

Obviously if you have some kind of condition that makes getting your period dangerous or complex, that's something that needs to be seriously addressed to resolve. Otherwise, it's just a freakin' period, not the end times. I've been getting one almost every month in some capacity for the last 38 years and I lived to tell the tale.

Rally, ladies, rally!

I meant KNOW the reality, not no the reality. Typing is for ... um, typists.