Being a Woman on HD - What to do?

[KarenInWA]

Hello.  I have now been on HD long enough to endure 2 periods on it. Not really liking how this is turning out! I tell the staff before they hook me up that I am on it, and they in turn half my heparin so I don't have a mess to deal with.  That has not been a problem until Saturday.  Maybe that nurse did something different, I don't know.  But, what happened in the end was, clotting.  I didn't get all my blood back because it clotted in that contraption just outside the filter.  It also clotted at my cath site (currently doing out on my fistula, and in on my catheter) and the nurse had to clean it out w/a few of those syringes before she was all done.  I'm usually not tired and washed out after D (which I usually do in the evenings, but on Saturdays I like to do an early run when possible) but today I ended up taking a nap!  Also, my hgb is finally on the rise, it was at 8.2 for a while, and now it is finally at 10.  This is after 2 runs of iron infusions (doing that for 8 treatments x 2) and epo shots at every run. The goal is to get it at 11.  It measured at 10 a day before this latest period started.  So, here is my dilemma:

I am currently taking the pill, mainly because my body likes to have a 21-day cycle that is kind of heavy.  Being that I am anemic, I don't think going "au naturel" is a good idea.  Now I'm thinking about taking the pill so I have a period once every 3 months.  My primary dr and I discussed this at my annual appt a couple of weeks ago.  We decided to see how this next period goes and decide from there.  So, my question is, how bad is it to have to half the heparin, and how bad is this clotting?  Also, maybe I should try this and see what it does to my hgb levels?  I really don't like the idea of finally getting on track with that, only to have my stupid period set me back every single month.  It's like taking a step forward, then taking 2 steps back.  Any input is appreciated!

KarenInWA

[jbeany]

Guys, you might want to leave this discussion now...

Karen, this is a pretty common problem, especially if you had heavy flow before kidney failure.  I actually bought a pack of Depends to wear to D until I found something that worked.  Someone on here suggested I look into the Mirena IUD.  It takes about two months to kick in, but it lowers your "flow volume" by a huge percentage, and it continues to lower it until your periods are barely noticeable. 

Once I got through the first few months, I didn't need heparin lowered at all.  I was NOT happy with the clotting risk, and the annoyance of having to have my machine restarted on a regular basis due to the clotting.  Plus, like you, I was very anemic.  The Mirena helped a lot - both from the periods and from the blood loss from clotted lines.

They are quick and easy to put in, and they last 5 years.  I'll be replacing mine even though I've had a transplant.  I'm much happier without the mess, the expense of supplies, and the cramps.

[Rerun]

When I was on dialysis 25 years ago my periods stopped because there was no Epogen back then and hbg was lucky to be 8 so the body did its own blood conservation.  Just telling history.


Now I'm on a pill (Nora BE) which just stops my periods all together.  I'm almost 50 so next January she is going to try and take me off this pill.  By god it had better be stopped! 

Ask about Nora BE (Norethindrone 0.35 mg tablest) (I have to take 2 a day otherwise I start)  So, again I never have periods.
The drug company is Watson.

 

[Cordelia]

Every month I dread mine. I have to talk to my unit very soon regarding this. I gush heavily into the toilet. I know they'll likely ask me how many pads I go though to gauge how heavy my periods are but forget it, I don't bleed heavily on the pads....... When I go to the bathroom I gush the menstrual blood right into the toilet. I can't tell how much blood loss I'm having then. All I know, it's TOO much!   

I hate the idea of having to tell them when I'm bleeding because to me, that's personal,  but darnit, I'm sick and tired of the heavy periods. It sucks. It tires me out really bad too-It did before dialysis but now I find it 10 times worse. I know the heavy bleeding is from the heparin and I'm afraid of clotting too if its backed off *sigh.

And the clots, it's gross. I had a pelvic exam and it's nothing inside of me causing this, I know its the heparin, it's gotta be-and my suspiscions were right, the nurse said it's the Heparin   

The nurse I spoke to about it this past week said they can back off the heparin without a doctor's order, just can't "up" it without a doctor's order.

I used to clot every dialysis session until my heparin was upped after I first started dialysis. I can just see this happening again. If its not one thing, it's something else. *sigh

I had my tubes tied years ago and I don't plan to have anymore children, I wish they could just take everything out to stop the periods   

[Jean]

Cordelia, mine were just like yours. The gushing into the toilet thing. Dr. tried several meds. None of them worked, so he gave me a hysterectomy. I came thru it like a champ. One word of caution tho. They also want to take your ovaries out at the same time. I would never do this again!!! I am 72 years old and still having hot flashes. And that was before the CKD.

[Des]

Same problem here....

They are VERY irregular, so basically I skip some months and are in absolute hell when I do have it. I was told that this is "normal" on HD.

 I am watching this thread in anticipation for some assistance. 
 

[Cordelia]

Des and Jean, I can so relate to you both. It's weird, before dialysis  I wouldnt have a period at all and I loved it LOL!

The first two or three months on dialysis I still had no period. Then when it did start it started with a bloody vengeance.    Pun intended! LOL!

Oh, and the cramps are much worse on D too   

Jean, are you saying that if your ovaries had been left in you would not have had the hot flashes? I'm a little confused.   

I basically went from a heavy cycle long before dialysis due to having a tubal litigation to having SUPER heavy periods after dialysis.   

[brandi1leigh]

OMG! I am so glad that this problem isn't unique to me. I don't really have anything to add, but just know I'm in the same boat!

[Cordelia]

It's a relief to know I'm not the only one too!   

[MooseMom]

I had a hysterectomy a couple of years ago (heavy bleeding enough to make me quite anemic...not good when you are a renal patient; this episode threw me out of fsgs remission), and I'm not on D, but I really do sympathize with all of you and do have a suggestion to make.  My gynecologist is female and is in her early forties.  She told me that she is on one of those pills that result in just one period a year.  Now, if SHE takes it, I would guess it would be safe; I know that many women are reluctant to cut down on the number of periods because there is this idea that menstruation "cleanses" the system.  But we have more periods than we used to because we are not pregnant as often.  Our bodies actually were not meant to bleed so often, and our ovaries were not meant to release so many eggs.  So, some of you may want to consider a type of pill like the one my gyne uses.

I'm thinking that D is hard enough already without the added complication of heavy periods, a complication that can easily be dealt with (with the advice of your doctors, of course!).

[tyefly]

I never thought about this.... as I too had a hysterectomy many years ago do to prolasped uterus.... I have not missed it....  I felt lucky not to go thru that every month....  But I never thought about all that a person would go thur with D and heparin....  I feel for all of you that still have to deal with that.....  Like MM said  its hard enought to deal with D  and then add that..... NOT FUN

[Cordelia]

Yep, its anything but fun.  I'm not able to take a birth control pill due to having high blood pressure. The needle, or any pill I cannot take. I had a tubal litigation 10 yrs ago.

At this point I'm thinking hot flashes (for me) would be more bearable than the extremely heavy flow.

[MooseMom]

Yep, its anything but fun.  I'm not able to take a birth control pill due to having high blood pressure. The needle, or any pill I cannot take. I had a tubal litigation 10 yrs ago.

At this point I'm thinking hot flashes (for me) would be more bearable than the extremely heavy flow.

There are a lot of different kinds of birth control pills, so I would really urge you to speak to your gynecologist and nephrologist about whether or not there is a pill that would be safe for you.  Most of us renal patients have high blood pressure, but if meds and good dialysis control yours well, perhaps taking the pill would be safer for you in the long run than such heavy bleeding.  It's worth asking about.

If you do not have large fibroids (and it doesn't seem that you do), you might consider a laproscopic hysterectomy, leaving the ovaries intact.  Might that help?  I just hate to see you run the risk of clotting due to a reduction in your heparin.  I'm really eager to hear how you and your docs solve this!  It must be very frustrating.

[romanyscarlett]

This is such a tough problem to solve. I've got no idea how to get around it other than taking pills to supress periods or having a hysterectomy.

Before dialysis I had heavy periods which would last 7-9 days. Now they're heavier but only last 5 days so at least I've had something positive come out of it!

I'm not on any birth control drugs as I found they made me a bit psychotic. I've tried the injection & various other pills over the years but I either became moody or I put on weight or I got bad cramps so in the end I gave up.

I also have low hemoglobin levels like the rest of you. In January it was 4.9 and I had 6 blood transfusions as well as a month in hospital. It turned out I'd been bleeding internally from a stomach ulcer which was worsened  by the heparin. It's all fixed now thankfully!

[Cordelia]

I sure hope I get to the bottom of it too. It's very frustrating. The other problem with the Pill is that I get weight gain. I've lost 60 pounds since renal failure and I am at the weight I should be pre transplant, I don't want to screw that up.

There was another kind of medication they can give instead of heparin. If I end up clotting, I am going to push to try that instead during my treatments.

In a nustshell, I think I'd rather opt to have a hysterectomy before going on pills. I'm past having kids so why keep all my insides, I figure   

The thoughts of having no period sounds very tempting! LOL!

Romany, how come you don't get liquid iron instead? I was told blood transfusions are quite rare now with liquid iron. I get liquid iron once a month, usually after my labs. I've never had a blood transfusion.

What are the benefits of having everything removed except the ovaries? If anyone knows, I'd like to hear. Will I go into early menopause? I'm only 39.

[MooseMom]

Keeping your ovaries will help your hormonal balance, which is a good thing.  It should help keep your bones stronger, which we all know is good if you are a renal patient.  Removing your uterus but keeping your ovaries will result in nothing more than having no more periods, and THAT is fantastic!  If you keep your ovaries, you won't go into menopause.

Hysterectomy/surgery is a last ditch move, but that doesn't mean it's a bad one. 

Hysterectomy is one of the best things that ever happened to me.  It saved my life.  Like you, I had finished having kids (I had a tubal ligation after my fsgs diagnosis), so it was a no-brainer for me.  I hope that you find a solution that works for you.  I'm certain you can solve this problem.



 

[paris]

This is the one thing all women can relate to.  I had a total hysterectomy (including ovaries and cervix) because one day I woke up in immense pain. ER showed a tumor the size of a volleyball on my uterus, so that had to go and I was fine with losing everything. No worries about ovarian cancer, cancer of the cervix, etc.  BTW the tumor was benign, but so fast growing it was going to be a huge problem.   Now I am so glad that was all dealt with before kidney failure started.  I really feel bad for those who have to deal with periods and dialysis.  It really is too much to ask, isn't it. That is why women are the stronger sex --- we deal with all the other stuff AND periods.   

Karen, let us know if you find a good solution.

[jbeany]

Every month I dread mine. I have to talk to my unit very soon regarding this.  and it's nothing inside of me causing this, I know its the heparin, it's gotta be-and my suspiscions were right, the nurse said it's the Heparin   

You might want to bypass talking to the neph and head straight to the gyno.  Nephs tend to be pretty clueless about anything other than kidneys and the lab work that goes with it.  Mine didn't have much to offer.  He just wasn't informed about birth control options, and he had so few female patients young enough to have these issues. (I was told by some of the nurses that my period would just stop completely so I didn't have to worry about it at all.  NOT!) When I read on here about the Mirena, I printed out the info from the manufacturer's website and showed it to my neph.  It's the only IUD with low enough hormone levels that it's approved for diabetics, so that cleared up one problem I'd had trying to find a solution.  He read through the specs and agreed that it wouldn't interfere with anything D related, so he gave me the go ahead to see what the gyno thought.

If you aren't diabetic, pills might be an option.  Never having been able to take them, I don't know what's out there.  Again, checking with your neph for interactions is a good idea.

If you aren't prepared for a hysterectomy - either full or partial, there's also endometrial ablation.   That was my second choice if the Mirena wasn't going to be an option because of the hormones in it.  It's non-surgical and an out-patient treatment that essentially heats off the uterine lining.  Some clinics use a heating element, some use hot water. Done right, you may never have a period again.

[Rerun]

Hey Greg10 you know everything else, why don't you chime in!~!!!!

            

[Des]

Hey Greg10 you know everything else, why don't you chime in!~!!!!

            

 

[romanyscarlett]

Romany, how come you don't get liquid iron instead? I was told blood transfusions are quite rare now with liquid iron. I get liquid iron once a month, usually after my labs. I've never had a blood transfusion.

I do get liquid iron and at the time I was on it twice a week as well as 2 Mircera injections each month but a hemoglobin of 4.9 is too low for your body to function so they had no choice but to give me blood transfusions. When it dropped to 4.9 I cannot even describe how ill I felt. I know different countries use different units of measurement (I'm always confused when I see Americans talk about their creatin results) but in the UK the lowest recommended HB level is 11.4 I think so I was well below half that.

[Cordelia]

I wondered if your iron was quite low to have to have a transfusion.

Well, I've made up my mind, I'm going to ask to have the heparin lowered a bit next time round this happens and if I have too much clotting, then I'm gonna ask about the other medication that's given during dialysis to reduce clotting. I've also made up my mind to talk to the 'female' neph once she comes round again rather than a 'male' neph, I find male doctors just don't understand about the 'female' things like 'female' doctors do.   

I'll go with that first and if that doesn't work, then I'll inquire about other ideas cuz I refuse to keep on living like that month to month-it SUCKS!