Coumadin/women's issues

Hello,

I thought I would start this thread for the ladies on coumadin with some specific issues and questions.

Guys, you are welcome, but be warned - this is for some specific issues!:)

Laurie I am hoping you found this new thread because I want to start out with a question:

I am going through menopause right now, and am having bladder infections a lot more than usual and was told that is normal for "women my age".

So he prescribed an estrogen suppository. Since I try to be an educated patient I knew that hormone replacement can cause clots, I asked him and he said since it's localized and the estrogen wouldn't go any other place....
Ok, then I picked up the item and right there on the package it said that people on anti coagulants shouldn't take it.

anyone have any experiences with this? Laurie, have you ever run across any possible interactions?

As an interesting side note, after a 7-day course of cipro, and the hormone suppository, my INR was 1.9. Last time, on only 3 days of cipro, my INR was 3.1.

Any thoughts?

Thanks!

Angela: I am not at your stage yet but I just spoke with my Hematologist and she said as long as I am on Coumadin, I will not be taking anything for menopause when I reach that age. It's a HUGE no no, esp for the size of my clot and how young (24) I was when I was diagnosed. I'd speak with another doctor if I was you.

I have been on coumadin for almost 2 years now. I have heavy cycles every month that last 10-14 days or so. It's not been as bad since I was taken off plavix. Iniatally, I was on coumadin and plavix following my thrombolectomy. After hemoglobin dropping too low every month and having to get blood, MD stopped plavix to see if that was why I was loosing so much blood every month. My hemoglobin would drop to 6-8. It did help although, my hemoglobin still drops to 9 or 10 every month. A women's range is 12-16. I cannot take anything to slow the bleeding due to the clotting issues. No hormones. Now, I have to start high dose of iron on first day of cycle to help with the anemia. Due to the high risks of clotting, I cannot back off the coumadin to help slow it down. It takes me way down every month. I get weak and I dread it every month.
I have seen my MD, hemotologist, surgeon and gynocologist about this and unfortunatley there's not any options. Even a hysterectomy is a dangerous option due to the risk of hemoraging and/or clots. It would require a week or so in the hospital. I would have to be started on heparin, taken off coumadin, then, stop heparin for surgery, start heparin back, put back on coumadin and get to therapeutic range which could take 7-9 days pending no problems. This is definately a womens issue, huh?

Lady Golfer- First let me say, I am so sorry you are dealing not only with a clot but a horrible cycle each month. I've noticed that since I've been on Coumadin and most recently back on the 'mini-pill' birth control, my period lasts exactly 7 days, 6 of which are heavy. I don't have pain but I'm used to a 3, 4 day cycle and not heavy whatsoever. It doesn't sound like, to me, that anything is possible. I guess I'll deal with the long and heavy cycle if I can stabilize my INR range.

Hope all the mother's out there had a WONDERFUL MOTHERs DAY yesterday!!!!

This thread reminds me of another annoying problem I have - a 12 day cycle with spotting 5 days before and up to 10 days after. Yep, that's right. Some type of bleeding nearly every day. Am I the only one? Any suggestions? Has anyone tried ablation?

Lady Golfer, I have been having very heavy periods, especially lately. I am 45 years old and it has been terrible. I am planning on talking to my doctor about a procedure called NOVASURE, which can be done in the doctor's office. I'll come back after my appointment next week and let you all know what she said.(You can probably google it on the web for more information.)

Angela, Your INR is affected by so many things, but antibiotics will get them out-of-range easily. Stress and chemo will do it too. As far as the hormone treatment is concerned...get another doctor!

Kimbo- I just had my first period since starting Coumadin and it was a nightmare. I never even bled that bad after having kids. My blood count was low, I spotted for 10 days after the 10 day non stop bleeding, and am almost ready to start again! What's worse is I work retail and am on my feet 8-10 hours a day. I'm going to my first Hemotologist appt tomorrow and will be checking into some of the non-surgery period stoppers. I've had my tubes tied years ago, and if I'm going to be on Coumadin for the rest of my life I certainly don't want to face this another 10-15 years until menopause.

Leisal wrote:

Lady Golfer- First let me say, I am so sorry you are dealing not only with a clot but a horrible cycle each month. I've noticed that since I've been on Coumadin and most recently back on the 'mini-pill' birth control, my period lasts exactly 7 days, 6 of which are heavy. I don't have pain but I'm used to a 3, 4 day cycle and not heavy whatsoever. It doesn't sound like, to me, that anything is possible. I guess I'll deal with the long and heavy cycle if I can stabilize my INR range.
Hope all the mother's out there had a WONDERFUL MOTHERs DAY yesterday!!!!

I'm surprised that your doc let you get any kind of hormonal bc. I have been practically begging my doc to be put back on a hormonal bc and she won't let me because of my history of clots.

I kept asking the question to all of the docs I see and eventually after my annual doppler was completed, although the clot wasn't gone, it had made my vein it's home, they decided that I could be on bc as long as it had no estrogen. so i decided between a few, and once i read up on the ones i felt comfortable with, they were prescribed to me. Now my INR has been stable for the past month and seems to be going very well. I even take my bc pill with my coumadin and there's been no effects.
How many clots have you had? Maybe that has something to do with it, since I have my one & only...keep asking them...be persistant. the worst answer you could get each time is what you've been getting. Good luck!

Hello,

Well 3 of my doctors agreed that I could have the vaginal hormone suppository to help me combat the effects of menopause. They said the estrogen wouldn't be metabolized through the liver and therefore it should be safe.
Anyone else heard this?

About heavy periods - yes dfinitely.....my obgyn tells me though my body is winding down and this wont' last much longer....:)

Good luck to everyone...GOd bless!

Leisal wrote:

I kept asking the question to all of the docs I see and eventually after my annual doppler was completed, although the clot wasn't gone, it had made my vein it's home, they decided that I could be on bc as long as it had no estrogen. so i decided between a few, and once i read up on the ones i felt comfortable with, they were prescribed to me. Now my INR has been stable for the past month and seems to be going very well. I even take my bc pill with my coumadin and there's been no effects.
How many clots have you had? Maybe that has something to do with it, since I have my one & only...keep asking them...be persistant. the worst answer you could get each time is what you've been getting. Good luck!

She said that I could have a IUD, but that's about it. Not even progestrin only BC. I have only had one clot, but it was in my lung.

Maybe it's because there was no obvious cause of mine and it was caught purely by chance. Maybe she didn't want to worry that I would get another and not catch it this time.

Max,
I am in the process of researching ablation...I am not sure I trust it completely yet. One doctor said he has great success (90%+ satisfaction rate) but there isn't a lot of data on what happens down the road, say, 30 years! He did say that 50% of people who have ablation end up getting hysterectomies, but that is a statistic that can be interpreted a number of ways. It looks like ablation is the only solution for those of us on coumadin with horrible bleeding, though. I am hoping someone will write about their experience with ablation...

Sarcasm: See that's crazy b/c the UID was 'off limits' for me since I could have excessive bleeding during the placement of it. So I think I had 3 choices (Depo, and 2 others, 1 of which i'm on) and i've had no problems. Our stories are kinda the same b/c they can't find a direct cause. I was diagnosed when I woke up and my entire left leg was huge and purple..nothing genetic, past surgeries, etc. But one in the lung is definiately higher up on the scale than my left thigh DVT is..not sure. I'd keep asking her though, although you need to do what you feel necessary and comfortable with. I don't plan on doing anything different until I feel differently because I have at least 20 more yrs until "the big event" should happen...we'll take it one day at a time.

After reading all this I am starting to wonder if it's safe for me to take those suppositories...

since I have such a hard time maintaining my INR these days above 2.0...I wonder if the suppositories could be the culprit? I just don't know.

The reason I like doing the suppository thing is that otherwise I end up with bladder infections - I get so irritated there that I seem to have a UTI just about every other month, and I can't stand it.

Does anyone else have this problem yet, or does anyone out there know what to do about frequent UTIs? Doctor tells me it's normal for "women my age" :)

and yes, I too take it one day at a time.

Leisal wrote:

Sarcasm: See that's crazy b/c the UID was 'off limits' for me since I could have excessive bleeding during the placement of it. So I think I had 3 choices (Depo, and 2 others, 1 of which i'm on) and i've had no problems. Our stories are kinda the same b/c they can't find a direct cause. I was diagnosed when I woke up and my entire left leg was huge and purple..nothing genetic, past surgeries, etc. But one in the lung is definiately higher up on the scale than my left thigh DVT is..not sure. I'd keep asking her though, although you need to do what you feel necessary and comfortable with. I don't plan on doing anything different until I feel differently because I have at least 20 more yrs until "the big event" should happen...we'll take it one day at a time.

I'm not on Coumadin anymore. Maybe that's why I was given the okay. I was only on it for six months. BEfore I was on Coumadin, I was on Lovenox, which I liked a lot more.

Angela wrote:

After reading all this I am starting to wonder if it's safe for me to take those suppositories...
since I have such a hard time maintaining my INR these days above 2.0...I wonder if the suppositories could be the culprit? I just don't know.
The reason I like doing the suppository thing is that otherwise I end up with bladder infections - I get so irritated there that I seem to have a UTI just about every other month, and I can't stand it.
Does anyone else have this problem yet, or does anyone out there know what to do about frequent UTIs? Doctor tells me it's normal for "women my age" :)
and yes, I too take it one day at a time.

I think that you should try to find out the cause of the multiple UTI's. Try going to a specialist. That would eliminate the daily treatment that is causing you grief

I was told by multiple doctors that the mirena IUD would be a viable option because it is such a low dose of a centralized application of only progesterone, that it should not cause or aggrivate any blood clots... the mini pill I have been told is too unreliable to be a real option, and because the progesterone is circulating in your blood stream (clot stream) then its also not an option... something that I have found with my cycles, is that they are actually easier now that Im properly coagulated, where-as before I had horribly heavy clotty painful periods that would last 8-15 days and I would be incapacitated for at least 5 of those days... passing massive golfball sized clots at least 4 times a day... now my periods last between 3-6 days... they are light rarely reaching above a medium flow level, and there are no clots passing, and a minimal amount of pain... I can actually survive without 750mg of vicodin every 4 hours for a week... I have to say thank g-d for that!

My daughter began her first period since starting on coumadin. We were both rather freaked out by the amount of blood, which is not usual for her. I imagine this is normal on coumadin. She doesn't get her INR done until next friday, so I won't get to ask the Dr., but what would you consider to be too much blood loss during a period, which would warrant a blood check? She was pale the first day, but she looks better today.

Should I ask about iron supplements? She's not on a multivitamin right now, but maybe I should find one without Vit K? Ideas??

Hi Kath,

I would suggest, any time you are concerned about something like that, bring it to the attention of her doctor.

It may just be one of those side effects of coumadin (I myself have VERY heavy periods since being put on coumadin) and in my case my doctor is not concerned, also I am at the other end of the spectrum as I am approaching menopause rather rapidly.

You might want to call her doctor or her OB/GYN to find out what's normal and what isn't for her.

And you could always ask the doctor if she could do another INR check now, and not wait.

In many cases, it all comes down to how you feel and if you don't feel comfortable, please call the doctor and share your concern.

One of my most favorite doctors said these beautiful words (after I told him I was worried about calling his office too much and was worried the staff would think I am a hysterical hypochondriac), he smiled and said, "no, you are not a hypochondriac. Always know that at the end of each day, I want my patients alive and well."

Wishing you and your daughter all the best!