Anyone who knows anything about gynecology and women's health issues...

[JennifersLost]

I could have written this OP post. I always bled heavily, could never take BCPs, got tested for everything under the sun and in my late 30s it got really, really out of control.

 

I bled for 11+ days in 21-day cycles: really crazy. There were several days each month I could barely leave the house.

 

Then, at 39 it stopped. Completely. First 3 months without a period, then 6 months, then a year. By 41 I was fully done.

 

So....OP....get everything checked out, but relief might be closer than you think! If you want any more kids, think about having them now.

 

My doctors keep telling me it's too early and now they want me to take BCPs so I go back to having periods. I tried it for a short time and went right back to the nightmare. No thanks. I feel so calm, so peaceful.....so right in my body. With exercise, supplements and yoga I feel better than I have for most of my adult life.

 

There is hope!

[EthiopianFood]

Black sheets two nights a month with a black towel folded underneath, plus black sweatpants/shorts, use some sort of cup to last a little longer, and two overnight pads. That's what I do. If you're not worried about staining, it takes away a lot of the hassle and anxiety.

[TravelingChris]

I am older than you but I was having heavy bleeding for the last few years, I just dealt with it. But then when I was put on blood thinners, it got worse (and fish oil could do the same since it thins the blood) and also made me very worried since the recommendation was that if the bleeding reached a certain point, I would have to go to the ER. So I ended up having Novasure procedure. There was really no pain and no problem for me. Now I still have periods but they are extremely light, in fact, I can now switch to panty liners.

[Catherine]

Ferritin level is an adequate screening test for hemochromatosis. There is no need for the genetic test if your ferritin level is normal.

[Margo out of lurking]

I also could have written your post. The flooding, passing huge clots, the inability to leave my house for so many days each month, anemia, towels everywhere for "backup"--and the refusal of a doctor to suggest anything but BCP or hysterectomy. At first, he pushed for ablation but then said there were no guarantees it would work. My desperate hope was to find the *cause,* not just a solution.

 

After four years of misery, I went to another doc and requested a Novasure ablation. My life changed almost instantly. I haven't had a period, nothing, in over three years.

 

I got my life back.

[Alice]

Have you had testing for a bleeding disorder? I'm a pediatrician so think of things more from a pediatric than adult medicine perspective but there are some mild bleeding disorders that can only have as a symptom heavy periods. Studies are varied but in some up to 20% of women with heavy periods have a particular bleeding disorder called von Willebrand's disease. It's genetic but can be either a new mutation (so no family history) or people in the family never realized they had it ("everyone always has heavy periods" kind of history).

 

The test is a blood test and fairly simple. There is some treatment, which might be different than what you would do otherwise. And since it's genetic it's good to know for you children/grandchildren.

 

Here is a CDC site with more info and a bunch of links. http://www.cdc.gov/ncbddd/hbd/women.htm

[MBM]

Ferritin level is an adequate screening test for hemochromatosis. There is no need for the genetic test if your ferritin level is normal.

 

True. Most doctors will not prescribe phlebotomies if ferritin levels are normal, but she might want to know if she has HH anyway for the sake of her and her children's future health. I know people who have it who were diagnosed with hemochromatosis in their early 20s. If her father has high ferritin levels and she is not anemic after heavy bleeding, that could indicate HH. It isn't necessary to get the genetic test, though. (I'm iron avid, btw -- very low ferritin, high serum iron, high tsat, high tibc. Some docs will order phlebotomies to try to lower those last three numbers, but everything has to be carefully monitored.)

Edited May 26, 2011 by MBM
added info

[SweetMissMagnolia]

I know alot of people are against them but personal experience--I can soooo relate-I had heavy periods from the time mine first started as a teen to the time I got my IUD then a few years later the ablation....When I was on the bcp (and I've tried many over the years I took them) it helped some but they were still awful to deal with. After my son was born we knew we couldn't have any more kids (mom's health issues) so I got the Mirena IUD--after the first few months it was GREAT!!! my periods went to just barely spotting for a week--every few months they got shorter and shorter to where they just lasted 3 days...I went from using overnights pads ALL DAY to using a few liners...AMAZING!! I ended up getting cysts and my dr decided it was time to do a tubal and an ablation because she knew my period issues. It was the best thing I ever did...My periods are even lighter. ***ablation isn't for everyone-she told me after having it done that it was dangerous to get pregnant after ablation--so please discuss it fully with your dr if you think it might be for you. I have had nothing but good experience since I had the ablation about 6+ yrs ago....best thing I ever did as far as "my female health".......good luck---mega doses of ibuprofen can help with cutting back the heaviness of bleeding but talk to you dr before you take it (600-800mg ibuprofen every 8-12 hrs)....and magnesium can help with cramping......good luck--I know where you're coming from.............and keep us updated.....

Edited May 26, 2011 by SweetMissMagnolia

[Greta]

Nope, don't worry about that part. Sometimes things just suck, even if other things would suck worse. :D

 

:iagree: This is a quality of life issue (for you and for me). For me, this makes it harder to pursue a course of action. I am fairly anti-intervention medically if at all possible. I don't want a hysterectomy (nor do I think I need one), and, like you, I refuse the birth control pills and the IUDs because of the hormones. I have migraines, as well.

 

Month after month, I tell myself that I can just deal with it, taking my iron supplement, emptying my Divacup all the time. I'm tired of just dealing with it. I hope the latest treatment helps me. If not, I think I might just be at a point at which I am willing to do the ablation. I am a good candidate. I have already met my insurance deductible. I am tired of living like this. I completely understand where you are coming from.:grouphug:

 

Thank you both (and everyone!) for all the sympathy and understanding. Carol, I really hope you get the relief you need. :grouphug:

[Greta]

If you don't mind me jumping in.....I like herbal remedies as well.

I heard years ago that Yarrow Tea is helpful for reducing flow. I do not suffer with it but I put it in my memory for just such an occassion. :tongue_smilie:

It tastes very bad....I will not ever forget that, but if you are willing to try anything you should google it and think about trying it out. I get my Yarrow from Azure Standard and it is very potent.

Good luck!!! Sounds very frustrating!

 

I could have written this OP post. I always bled heavily, could never take BCPs, got tested for everything under the sun and in my late 30s it got really, really out of control.

 

I bled for 11+ days in 21-day cycles: really crazy. There were several days each month I could barely leave the house.

 

Then, at 39 it stopped. Completely. First 3 months without a period, then 6 months, then a year. By 41 I was fully done.

 

So....OP....get everything checked out, but relief might be closer than you think! If you want any more kids, think about having them now.

 

My doctors keep telling me it's too early and now they want me to take BCPs so I go back to having periods. I tried it for a short time and went right back to the nightmare. No thanks. I feel so calm, so peaceful.....so right in my body. With exercise, supplements and yoga I feel better than I have for most of my adult life.

 

There is hope!

 

Black sheets two nights a month with a black towel folded underneath, plus black sweatpants/shorts, use some sort of cup to last a little longer, and two overnight pads. That's what I do. If you're not worried about staining, it takes away a lot of the hassle and anxiety.

 

I am older than you but I was having heavy bleeding for the last few years, I just dealt with it. But then when I was put on blood thinners, it got worse (and fish oil could do the same since it thins the blood) and also made me very worried since the recommendation was that if the bleeding reached a certain point, I would have to go to the ER. So I ended up having Novasure procedure. There was really no pain and no problem for me. Now I still have periods but they are extremely light, in fact, I can now switch to panty liners.

 

Thank you all for these suggestions and for sharing your experiences. I honestly had no idea that so many other women were suffering with this same problem! It really makes me wonder if there is something in the modern diet, lifestyle, environment, etc. that is seriously messing up our hormones.

[Greta]

Have you had testing for a bleeding disorder? I'm a pediatrician so think of things more from a pediatric than adult medicine perspective but there are some mild bleeding disorders that can only have as a symptom heavy periods. Studies are varied but in some up to 20% of women with heavy periods have a particular bleeding disorder called von Willebrand's disease. It's genetic but can be either a new mutation (so no family history) or people in the family never realized they had it ("everyone always has heavy periods" kind of history).

 

The test is a blood test and fairly simple. There is some treatment, which might be different than what you would do otherwise. And since it's genetic it's good to know for you children/grandchildren.

 

Here is a CDC site with more info and a bunch of links. http://www.cdc.gov/ncbddd/hbd/women.htm

 

Thank you so much for mentioning this. I have not heard of it before, and my doctor didn't mention this either (so obviously, she didn't test me for it). I will put this on my growing list of things to talk to her about the next time I see her. Thanks so much!

[Pippen]

Thank you all for these suggestions and for sharing your experiences. I honestly had no idea that so many other women were suffering with this same problem! It really makes me wonder if there is something in the modern diet, lifestyle, environment, etc. that is seriously messing up our hormones.

 

My chiropractor believes that it's our use of birth control pills. I don't know--both my mom and aunt had the same (or worse) issues than I did starting at young ages before they were even on the pill.

[Greta]

Ferritin level is an adequate screening test for hemochromatosis. There is no need for the genetic test if your ferritin level is normal.

 

True. Most doctors will not prescribe phlebotomies if ferritin levels are normal, but she might want to know if she has HH anyway for the sake of her and her children's future health. I know people who have it who were diagnosed with hemochromatosis in their early 20s. If her father has high ferritin levels and she is not anemic after heavy bleeding, that could indicate HH. It isn't necessary to get the genetic test, though. (I'm iron avid, btw -- very low ferritin, high serum iron, high tsat, high tibc. Some docs will order phlebotomies to try to lower those last three numbers, but everything has to be carefully monitored.)

 

Yes, this whole thing is confusing to me! My doctor said I don't have hemochromatosis on the basis of a normal ferritin level. BUT I've read that many women with HH are not diagnosed until they have been in menopause for a few years, because that's when the iron levels start really building up. So to me, it doesn't seem that ferritin level would be a very good indicator in a woman who is menstruating, particularly one who is bleeding as much as I do. I have planned to keep having my ferritin levels tested once I'm in menopause, or if I get an ablation or some other procedure/medicine that significantly changes my bleeding. Maybe I should just get the gene test to know for sure. :confused:

[Greta]

 

After four years of misery, I went to another doc and requested a Novasure ablation. My life changed almost instantly. I haven't had a period, nothing, in over three years.

 

I got my life back.

 

I am so glad you got the treatment you needed! :grouphug:

[Greta]

The heavy bleeding that wouldn't stop on its own and couldn't stop was justification alone. (No woman should have more days of bleeding than non-bleeding every month.) There were days I couldn't leave the house because I needed the bathroom every 20 minutes. Even with taking iron I was severely anemic by the time I had the surgery, so much so the they were prepped to do a blood transfusion in case I needed it during surgery.

 

Wow. I'm so relieved that you made it through the surgery well, and that you're doing better. Before I went on the mini-pill, I had some cycles where I had more bleeding days than non-bleeding days. What was "normal" for me was to have eight days of heavy bleeding, out of an only 21 day cycle. My cycle is now a normal 28 days, so that helps a lot! My periods can last anywhere from five to eight days. My fear is that now that I have gone off of the mini-pill, I will go back down to 21 day cycles. The thought makes me want to :crying:

[MBM]

Yes, this whole thing is confusing to me! My doctor said I don't have hemochromatosis on the basis of a normal ferritin level. BUT I've read that many women with HH are not diagnosed until they have been in menopause for a few years, because that's when the iron levels start really building up. So to me, it doesn't seem that ferritin level would be a very good indicator in a woman who is menstruating, particularly one who is bleeding as much as I do. I have planned to keep having my ferritin levels tested once I'm in menopause, or if I get an ablation or some other procedure/medicine that significantly changes my bleeding. Maybe I should just get the gene test to know for sure. :confused:

 

One reason many women have too much iron after menopause is that they have stopped menstruating but continue taking iron supplements. The iron builds up and isn't released via their period. It's important to be monitored if taking iron supplements especially after periods stop.

 

You really don't need to get the genetic test unless you want to know if you carry the gene responsible for HH. You should keep an eye on your iron panels, though, especially if your period starts to lighten up. If you see the numbers going up, you can get phlebotomies to keep your iron in a healthy range. At this point, I wouldn't sweat it if I were you. :)

[Greta]

One reason many women have too much iron after menopause is that they have stopped menstruating but continue taking iron supplements. The iron builds up and isn't released via their period. It's important to be monitored if taking iron supplements especially after periods stop.

 

Ah, I see. Well I don't even take iron supplements now. I just eat lots of red meat and liver. I sure won't be taking iron supplements after menopause, so no worries there.

 

You really don't need to get the genetic test unless you want to know if you carry the gene responsible for HH. You should keep an eye on your iron panels, though, especially if your period starts to lighten up. If you see the numbers going up, you can get phlebotomies to keep your iron in a healthy range. At this point, I wouldn't sweat it if I were you. :)

 

Cool, thanks for explaining. My Dad had the genetic test done, and while I don't remember the names of the genes at the moment (I could ask him) I remember that he had two different recessive genes that cause the disease. So I am definitely a carrier, at a minimum, as are my brothers. But we would only have the disease if my mom also carries a recessive gene for it. She doesn't have any symptoms (ferritin levels are normal), but hasn't gotten the genetic test.

[foxbridgeacademy]

I had a thermal ablation done when I was 30, six years later I still have super light periods. The Doctor did warn me that I might start to have heavier flow after the first two years. Only recently (last 6 mos.) have I noticed any significant increase in flow. In the first five years I never used anything, no tampons/pads nothing. I would have "spotting" for 2 days that was it. In the last 6 mos. I have started using 1-2 "regular" tampons per period. Prior to the ablation I would bleed as much as you do. Also having the ablation, and of course the required tubal, has relieved so much of my worries over getting pregnant, I feel great. No more dragging around like I'm dying for 2 weeks a month. No more iron pills or anemia. I have energy again. Also I haven't had an abnormal Pap smear (from pre-cancerous cells) since the ablation, YAY!

[hellen]

I haven't read all of the responses so please forgive me if it has already been mentioned. I have very heavy bleeding after birth. I was concerned with my latest pregnancy because I didn't want to go through the transfusions again or possibly die. A midwife friend recommended that I take alfalfa capsules. I was skeptical but it was worth a shot. I took them in the month leading up to the birth. Surprisingly it worked. I had regular bleeding for once. Maybe it was the alfalfa and maybe it wasn't but it might be worth it to you to try it out.

[Catherine]

Yes, this is true, and if you are not anemic despite heavy bleeding, it makes sense to recheck your ferritin level after menopause, even more than once as it will probably rise slowly over time as you stop bleeding.

[cougarmom4]

It does seem crazy that there are so many of us who have had/are dealing with this problem!

 

I just wanted to pipe in to add a word of caution. I also had extremely heavy periods for almost two years--then this past January I ended up in the ER. Kind of a long story--but I lost so much blood I was passing out...they ended up doing a D&C (had uterine fibroids and endometrial polyps) and I had to have a transfusion of 7 units of blood. (Apparently that is a lot...Doc later said I could have died...). A few weeks later I opted for a laporascopic hysterectomy (leaving ovaries, btw) rather than an ablation (as my doc said that there was only a 50% chance it would solve my problem)...and I am so thankful to know I will never deal with that heavy bleeding again. Now I'm dealing with anemia and having to do IV iron therapy to try to solve the problems from those years of heavy blood loss.

 

So my point is this...be sure to talk to your doctor to find out at what point you should go to the ER. I obviously waited a bit too long. It is very hard to know when it is bad enough--as it had been so heavy for years and my doctor didn't seem too worried about it...I just kind of kept telling myself it would stop soon and it wasn't that big of a deal. The ER nurses said I should have come in when I filled a pad/tampon an hour for 5-6 hours (well...I'd done that for years...every month) but I was going on 20 hours of doing that when I started passing out. (Dh had been gone on a campout w/the scouts & I couldn't get ahold of him; I just wasn't sure it was worth an ambulance...I had the kids all home with me...luckily I didn't pass out until dh got home!).

 

Hang in there! I hope you find the solution that is right for you!

[emubird]

It's very common and usually not the result of anything worrisome, but the doctors I've talked to about it don't seem to think it's really all that big of a deal, once they rule out the more lethal things that sometimes cause it.

 

That said, it can be dangerous if you lose too much blood.

 

It does eventually go away at menopause, but that could be a long time to wait it out. Meanwhile, your life would be on hold for years.

 

The ablation might only give you a few years of relief... but that would be a few years of relief! If you want the ablation and understand the results, you should be the one making that decision, not your doctor. You should get info on whether it will likely work on you (that may be the reason your doctor is shy of it? that it is less likely to work on younger women?).

[joannqn]

I'm coming into this late but wanted to chime in with I deal with this too. I also get really irritable. I tend to think my family is being _________ (insert negative adjective). I tend to start arguments with my husband and yell at my kids during the week before my cycle. I feel perfectly sane and justified but it's obviously me since it is so predictably tied to my cycle.

 

One thing that helps me with the flow is to take 800mg of ibuprofen three times a day starting a day or two before my period begins and going until my usual heavy days are over (days 2 and 3 are my worst). That's the maximum dosage. The regular dosage doesn't help all that much.

 

I also use a Diva cup and overnight pad together. I tend to gush without warning and will fill that Diva cup in an instant. It overflows into the pad. With the two together I can usually manage short trips out (an hour max). I only take short trips because it is too messy to clean up in a public bathroom; I have to have a sink within reach of the toilet.

 

After the birth of my last daughter, my midwife recommended Depends for postpartum bleeding. For the first time ever, I didn't soil the bed every night postpartum. If the Diva cup and overnight pad didn't work, I'd use those overnight to save my bed.

 

I can't use any size tampons. My flow is too heavy; it just saturates them and pushes them back down.

 

Try Always Infinity overnight pads. They are expensive but they guarantee satisfaction and will refund you the price of one box. They are a bit different and I felt a lot drier with them. Part of that was my cycle being lighter but they seemed to pull the moisture down better than normal pads.

 

I'm currently trying Jolessa BCP. It's one of the pills where you have a cycle every three months. My period was lighter than normal, and I managed with just one dose of ibuprofen and Always Infinity pads (overnights). The down side is that I spotted for two months. My body seemed to think it missed something. I'm hoping the second round will fix the spotting issue. Initially, I didn't want to be on the pill (I tend towards trusting God for our family size) but between the bleeding, the hurt I cause my family with the irritability, and the fact that we're feeling really maxed out with four kids, I felt I had to try it.

[TracieT]

My heavy, painful periods are due to uterine fibroids. I had begged doctors for years to find out why I was having pain and got "Just take Advil." I finally found a dr. who actually did an u/s and found the fibroids. Sheesh! Honestly, I think they were ignoring me because I had no plans to get pregnant (because after years of trying we adopted and are no longer trying to conceive), so they just figured I should just live with it.

 

Anyway, at the same time I'd gone to a place and had some comprehensive testing done and found out I was Estrogen dominant, suffering from adrenal fatigue, and having some thyroid issues. Once I started on bioidentical progesterone cream my periods got lighter and the pain was gone. Apparently progesterone shrinks fibroids. I've been on my therapy for a year and was having some other issues and just had some more bloodwork done and found out my B12, D and Ferritin levels were all incredibly low. So now I'm working on those things.

 

Just be sure you are getting a complete workup, especially hormones. The place I went to just does consulting for free (you do your testing at home and send it to the lab) and they will consult over the phone, too. I don't know how much detail I can give here or if I can give the website or anything. (I'm new here and I don't want to get in trouble!) I do recommend them to everyone, though, because they are the first people who have ever listened to me and not made me think I'm crazy for not feeling well. And who actually cared to get to the root of my problems, not just telling me to medicate my pain! If I'm allowed to post the link here, let me know and I'll do it. If nothing else, they have a lot of good resources on their page to do your own research!

[micheller1]

I haven't read all the responses but b/c of the issues I was having with my cycle my OB had recommended a hysterectomy. UM no. I hate surgery and anything close to it and it felt very elective.

 

She suggested the ablation. I was 31. She did tell me that more than likely it would be a recurring problem and I would have to readdress the issue. But I felt like the ablation is almost recovery time free compared with the hysterectomy and she said she we could revisit my options when necessay. 3 years later I'm only occassionally spotting. I know everyone is different but I would MOST DEFINETELY get a 2nd opinion.

 

The ablation is definitely a temporary fix to a problem that will prob. require a hysterectomy (uterine) to fix but in this case procrastination in the way of ablation seems like a good option unless you are all for a uterine hysterectomy.