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Old 03-09-2008, 02:34 PM   #1
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Period hemmoraging - sometimes 6 months long - any advice please?

Ladies - I have had this problem since starting periods - and thus have always been anaemic - sometimes a little, more often than not - very. The worst was a count of 3.5 (I understand that in the UK one is hospitalised at 3). Right now I am 7.

However I just have my period, non stop for weeks, months, sometimes years, with maybe 2 weeks off at worst for the whole year.

I have exhausted every medical and almost all alternative therapy - with some success - but nothing really curing me. I was wondering if anyone could advise me - as I am now in my 30s - and really feel that life is passing me by.

I pump myself full of Iron and bvits - but this does not work, as I can never seem to keep up with what my body is loosing via my period. If anyone can help with any advise, I would really appreciate it, as at this point, I really don't what other avenue to turn to.
thanks

 
Old 03-09-2008, 05:46 PM   #2
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Re: Period hemmoraging - sometimes 6 months long - any advice please?

I don't know that is a hard one to answer. I'm not sure of what medical therapy that you have tried and if you are planning on children or not makes a differnce as to a solution for you.

I do know one thing, in the US they give you a blood transfusion at 7 and below. You are still really low and I truely don't know how you manage with this. I have never heard of a cycle lasting that long. What does your PCP or GYN suggest for you?

You do sound very educated on the subject, and you are right you are just not able to replace what is lost and never will until you stop or control the blood loss. FLFLOWERGIRL

 
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Old 03-09-2008, 06:41 PM   #3
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Re: Period hemmoraging - sometimes 6 months long - any advice please?

Have you tried hormones to lessen the severity and frequency, such as birth control pills? My periods aren't extremely heavy, but still my docs surmise they are the cause of my anemia so they have recommend that I get the Mirena IUD. It is supposed to last for 5 years and either greatly lessens or eliminates menstrual flow. Another thing would be to have a uterine ablation, but you are young and would not want this if you should ever want to try for children.

Last edited by JJ1; 03-09-2008 at 06:41 PM.

 
Old 03-10-2008, 10:28 AM   #4
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Re: Period hemmoraging - sometimes 6 months long - any advice please?

Quote:
Originally Posted by JJ1 View Post
Have you tried hormones to lessen the severity and frequency, such as birth control pills? My periods aren't extremely heavy, but still my docs surmise they are the cause of my anemia so they have recommend that I get the Mirena IUD. It is supposed to last for 5 years and either greatly lessens or eliminates menstrual flow. Another thing would be to have a uterine ablation, but you are young and would not want this if you should ever want to try for children.
Thank you very much for your advice. I have been told that birth control pills may help - but probably not. From my viewpoint - I will try them once I have fully tried every other route - as I would much rather know the route cause of the problem, than just mask it. But I suppose I really need to think about quality of life over ethics at some point!

Thanks again for your kind words.

 
Old 03-10-2008, 10:33 AM   #5
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Re: Period hemmoraging - sometimes 6 months long - any advice please?

Quote:
Originally Posted by FLFLOWERGIRL View Post
I don't know that is a hard one to answer. I'm not sure of what medical therapy that you have tried and if you are planning on children or not makes a differnce as to a solution for you.

I do know one thing, in the US they give you a blood transfusion at 7 and below. You are still really low and I truely don't know how you manage with this. I have never heard of a cycle lasting that long. What does your PCP or GYN suggest for you?

You do sound very educated on the subject, and you are right you are just not able to replace what is lost and never will until you stop or control the blood loss. FLFLOWERGIRL
Thank you very much for your advice, I do not plan on having children - and indeed understand that as I have PCOS I would not be able to either.
Very interesting re. the US course of action - wish I could have that here! - I think maybe as I have been anaemic for so many years I just get on with life, and cope as best I can!

All the Doctors and specialists I have seen have poked, prodded, theorised on and on - and eventually all have come to the same conclusion of not knowing why! (which does not help me). Actually I had the best help from chinese herbs and ayrvedic herb medicines - but still nothing fully stops it!

Anyway thank you for your kind words,

 
Old 03-10-2008, 01:52 PM   #6
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Re: Period hemmoraging - sometimes 6 months long - any advice please?

spettigue16--Since you do know the cause of your anemia is from blood loss due to your cycle, won't your GYN make a suggestion as to what procedure that you should try? I myself had to have an ablation (but I am older and over having children) and thank goodness that it did work. They also found 7 polyps that did not show up on the transvaginal ultrasound. That was a surprise but was the cause of the heavy bleeding that I thought was normal because I had been heavy all my life. Even after I was diagnosed, I still thought that I could just deal with it. Then an Internist doc told me straight up, It's either going to be blood transfusions or a rather simple procedure. It was at that point that I finally made the call and had the ablation. My life has changed so much and I'm finally starting to feel human again. Long term anemia is not without risk and can lead to other more difficult things. Good luck to you. FLFLOWERGIRL

 
Old 03-10-2008, 10:27 PM   #7
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Re: Period hemmoraging - sometimes 6 months long - any advice please?

Quote:
Originally Posted by spettigue16 View Post
Thank you very much for your advice, I do not plan on having children - and indeed understand that as I have PCOS I would not be able to either.
I have PCOS as well and have had cycles where I hemorrhage for months on end. Currently I'm not doing that, instead the lining is just building up inside my uterus and staying there (how thoughtful of it! ) Anyway, a diagnosis of PCOS doesn't always mean you can't have kids, many women with the disorder go on to have children. Some need fertility assistance, but other don't, it just depends. I personally have chosen not to have kids at the moment, however I still want to preserve my fertility, so I refuse to have extremely invasive procedures done.

The Reproductive Endocrinologist wants me to have a Mirena IUD, but I've decided not to do that. If at some point I'm left with either that or a hysterectomy then I'll try it, but I don't want it done so early on. The BEST results I had with getting that bleeding under control was with continuous dose birth control pills. That is when you take active pills every day and suppress your period for 3-4 months at a time. It was with a higher dose pill though (Ovcon 35) since I had bad results with other birth control pills not being strong enough to stop the bleeding.

I would give the continuous dose birth control pills a try before resorting to surgery. Right now I am trying to get my GYN to give me those again instead of the IUD. They can help balance the wonky hormonal problems that women with PCOS have, as well as protect against uterine cancer. Then, once you've had a break from the bleeding, maybe they'll be able to take a closer look and see what is going on.

 
Old 03-11-2008, 05:51 AM   #8
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Re: Period hemmoraging - sometimes 6 months long - any advice please?

Quote:
Originally Posted by FLFLOWERGIRL View Post
spettigue16--Since you do know the cause of your anemia is from blood loss due to your cycle, won't your GYN make a suggestion as to what procedure that you should try? I myself had to have an ablation (but I am older and over having children) and thank goodness that it did work. They also found 7 polyps that did not show up on the transvaginal ultrasound. That was a surprise but was the cause of the heavy bleeding that I thought was normal because I had been heavy all my life. Even after I was diagnosed, I still thought that I could just deal with it. Then an Internist doc told me straight up, It's either going to be blood transfusions or a rather simple procedure. It was at that point that I finally made the call and had the ablation. My life has changed so much and I'm finally starting to feel human again. Long term anemia is not without risk and can lead to other more difficult things. Good luck to you. FLFLOWERGIRL
Thank you for your words - some very interesting areas for me to look into and question. Yes - at this point quality of life really does need to get better!
b

 
Old 03-11-2008, 05:53 AM   #9
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Re: Period hemmoraging - sometimes 6 months long - any advice please?

Quote:
Originally Posted by corgee21 View Post
I have PCOS as well and have had cycles where I hemorrhage for months on end. Currently I'm not doing that, instead the lining is just building up inside my uterus and staying there (how thoughtful of it! ) Anyway, a diagnosis of PCOS doesn't always mean you can't have kids, many women with the disorder go on to have children. Some need fertility assistance, but other don't, it just depends. I personally have chosen not to have kids at the moment, however I still want to preserve my fertility, so I refuse to have extremely invasive procedures done.

The Reproductive Endocrinologist wants me to have a Mirena IUD, but I've decided not to do that. If at some point I'm left with either that or a hysterectomy then I'll try it, but I don't want it done so early on. The BEST results I had with getting that bleeding under control was with continuous dose birth control pills. That is when you take active pills every day and suppress your period for 3-4 months at a time. It was with a higher dose pill though (Ovcon 35) since I had bad results with other birth control pills not being strong enough to stop the bleeding.

I would give the continuous dose birth control pills a try before resorting to surgery. Right now I am trying to get my GYN to give me those again instead of the IUD. They can help balance the wonky hormonal problems that women with PCOS have, as well as protect against uterine cancer. Then, once you've had a break from the bleeding, maybe they'll be able to take a closer look and see what is going on.
Thank you - quite a fwe things here for me to think about!
b

 
Old 03-12-2008, 02:35 PM   #10
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Re: Period hemmoraging - sometimes 6 months long - any advice please?

I know first hand what a nightmare dyfunctional uterine bleeding can be when it cant be controlled. I have been on every type of BCP including continous dosing, progestrone only, and high estrogen pills, but none of the helped. (So I know the frustration of having to wait 2-3 cycles to conclude that they do not help. ) I have had two endometrial ablasions--minor, temporary improvements. Now, I am currently scheduled for a laproscopic hysterectomy. I am currently on Lupron to ensure that I do not bleed and my counts recover for surgery.

So for what it is worth, here is my advice. First, if pills have not worked for you or you do not like the side effects, TRY THE MIRENA. The hormones effects are for the most part local to the uterus, so all the side effect that you have received from oral hormone/contriceptives should not be an issue.

Second, make sure that you have had the right tests. I am sure that you have had pelvic and transvaginal U/Sound, however these are not so sensitive. Specifically, they usually do not differentiate between a fibroid or adenomyoma or when measuring the thickness of the lining in the uterus, they can not differentiate between normal tissue and adenomyosis. (I was misdiagnosed with "a thick lining" and fibroids. Now I know that I had adenomyosis and one of the fibroids was actually an adenomyoma.) A general U/S also will not pick up somethings like an endometrial polyp. So if you have not been examine BY A PHYSICIAN with either hysteroscopy or hysterosonography, at this point I would demand it before mirena. Even if you have to get a referral for a visit with a physician whose office is set up for one of the two. Some doctors will not go past the typical U/S, especially if in a small office that does not have the equipment on had. (Even a MRI could add insight above and beyond an U/S.) YOU ARE BLEEDING FOR A REASON, SO MAKE SURE THAT YOUR DOCTOR MAKE AN ACCEPTABLE EFFORT TO FIND THE REASON. (Fortunately, I had a general pratitioner that pushed me to change gyn because she thought my previous one just did not try much to get to the bottom of things even after two ablasions failed. Turns out that I could have resolved the issue much earlier with a proper diagnosis, which was recently made by the new doc and hysterosonography.)

Third, I know you are likely used to being anemic. However, you should not take the severe anemia lightly. Especially when it comes to matters of the heart, literally. When you counts are low do not try any heavy physical activity. Remember your heart is a muscle and needs oxygen, so when you exercise your heart is competing with every other muscle for your limited oxygen reserve. Also realize that when you counts drop significantly, your heart rate is already increased to meet the normal demand for oxygen.

Forth, if your bleeding is not controlled by the mirena and no reason other than a thick uterine lining is found, I would consider an endometrial ablasion, if fertility is not desired. A D and C could also provide temporary benefits without affecting fertility, while your body is adjusting to the continous BCP if that is the treatment you choose.

 
Old 03-13-2008, 02:05 AM   #11
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Re: Period hemmoraging - sometimes 6 months long - any advice please?

Quote:
Originally Posted by tdt3543 View Post
I know first hand what a nightmare dyfunctional uterine bleeding can be when it cant be controlled. I have been on every type of BCP including continous dosing, progestrone only, and high estrogen pills, but none of the helped. (So I know the frustration of having to wait 2-3 cycles to conclude that they do not help. ) I have had two endometrial ablasions--minor, temporary improvements. Now, I am currently scheduled for a laproscopic hysterectomy. I am currently on Lupron to ensure that I do not bleed and my counts recover for surgery.

So for what it is worth, here is my advice. First, if pills have not worked for you or you do not like the side effects, TRY THE MIRENA. The hormones effects are for the most part local to the uterus, so all the side effect that you have received from oral hormone/contriceptives should not be an issue.

Second, make sure that you have had the right tests. I am sure that you have had pelvic and transvaginal U/Sound, however these are not so sensitive. Specifically, they usually do not differentiate between a fibroid or adenomyoma or when measuring the thickness of the lining in the uterus, they can not differentiate between normal tissue and adenomyosis. (I was misdiagnosed with "a thick lining" and fibroids. Now I know that I had adenomyosis and one of the fibroids was actually an adenomyoma.) A general U/S also will not pick up somethings like an endometrial polyp. So if you have not been examine BY A PHYSICIAN with either hysteroscopy or hysterosonography, at this point I would demand it before mirena. Even if you have to get a referral for a visit with a physician whose office is set up for one of the two. Some doctors will not go past the typical U/S, especially if in a small office that does not have the equipment on had. (Even a MRI could add insight above and beyond an U/S.) YOU ARE BLEEDING FOR A REASON, SO MAKE SURE THAT YOUR DOCTOR MAKE AN ACCEPTABLE EFFORT TO FIND THE REASON. (Fortunately, I had a general pratitioner that pushed me to change gyn because she thought my previous one just did not try much to get to the bottom of things even after two ablasions failed. Turns out that I could have resolved the issue much earlier with a proper diagnosis, which was recently made by the new doc and hysterosonography.)

Third, I know you are likely used to being anemic. However, you should not take the severe anemia lightly. Especially when it comes to matters of the heart, literally. When you counts are low do not try any heavy physical activity. Remember your heart is a muscle and needs oxygen, so when you exercise your heart is competing with every other muscle for your limited oxygen reserve. Also realize that when you counts drop significantly, your heart rate is already increased to meet the normal demand for oxygen.

Forth, if your bleeding is not controlled by the mirena and no reason other than a thick uterine lining is found, I would consider an endometrial ablasion, if fertility is not desired. A D and C could also provide temporary benefits without affecting fertility, while your body is adjusting to the continous BCP if that is the treatment you choose.
Thank you very much for your detailed reply - I actually have an appt. with a diff. consultant next week - so now I have ammunition in preparation! - Very interesting reading your case history - and we will see what happens!
b

 
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