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Looking for study/medical article on ME and menstrual cycle disturbances

concepcion

Senior Member
Messages
118
A friend's young adult daughter with ME has been in hospital for over a month due to extreme weight loss after 3 IV iron treatments. By the time she entered the hospital she weighed just over 60 pounds and they took her right to ICU. My friend has tried to educate the hospital staff about ME, getting a number of them to watch "Unrest", and this has made some difference.

The issue they have now is that her daughter has a history of heavy periods, since age 13, but with ME the bleeding has been epic. They want this issue dealt with, as it has been one of the worst symptoms, and they want to take advantage of being in the hospital. An ultrasound hasn't revealed anything, and the staff think it's just because she lost weight. My friend is frustrated as this extreme heavy menstrual bleeding has gotten worse as her daughter's illness became more severe.

I'm trying to find any research studies or medical articles that she can take to the hospital which will explain this. I thought I had come across something a few years ago, but can't seem to find it. Can any of you suggest any appropriate material which covers this specific issues - ME and heavy mentruation or very disturbed menstrual cycles - which my friend can show to the hospital medical staff?
 
Last edited:

Ema

Senior Member
Messages
4,729
Location
Midwest USA
A friend's young adult daughter with ME has been in hospital for over a month due to extreme weight loss after 3 IV iron treatments. By the time she entered the hospital she weighed just over 60 pounds and they took right to ICU. My friend has tried to educate the hospital staff about ME, getting a number of them to watch "Unrest", and this has made some difference.

The issue they have now is that her daughter has a history of heavy periods, since age 13, but with ME the bleeding has been epic. They want this issue dealt with, as it has been one of the worst symptoms, and they want to take advantage of being in the hospital. An ultrasound hasn't revealed anything, and the staff think it's just because she lost weight. My friend is frustrated as this extreme heavy menstrual bleeding has gotten worse as her daughter's illness became more severe.

I'm trying to find any research studies or medical articles that she can take to the hospital which will explain this. I thought I had come across something a few years ago, but can't seem to find it. Can any of you suggest any appropriate material which covers this specific issues - ME and heavy mentruation or very disturbed menstrual cycles - which my friend can show to the hospital medical staff?
You might have a look at this blog which links to this paper:

https://www.healthrising.org/blog/2...in-chronic-fatigue-syndrome-and-fibromyalgia/

Menopause.2015 Feb 2. Early menopause and other gynecologic risk indicators for chronic fatigue syndrome in women.Boneva RS1, Lin JM, Unger ER.
 

Seven7

Seven
Messages
3,444
Location
USA
but with ME the bleeding has been epic.
OMG I thought this was a POTs thing, I am struggling to a point where I am worried. What I am doing, is taking some prescription iron before and after it (mainly to prevent the intolerable passing out I am experiencing PMS and during and now even a few days after). But I am like using overnights and double pants because I cannot even keep it in. This has gotten worst in the last 3 months (but I have always been on the excessive side). The women in my family have all end up in ER unable to stop bleedings (I have not been there yet) so I always assume was me and not related to my ME. Will dig now.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
A friend's young adult daughter with ME has been in hospital for over a month due to extreme weight loss after 3 IV iron treatments. By the time she entered the hospital she weighed just over 60 pounds and they took her right to ICU. My friend has tried to educate the hospital staff about ME, getting a number of them to watch "Unrest", and this has made some difference.

The issue they have now is that her daughter has a history of heavy periods, since age 13, but with ME the bleeding has been epic. They want this issue dealt with, as it has been one of the worst symptoms, and they want to take advantage of being in the hospital. An ultrasound hasn't revealed anything, and the staff think it's just because she lost weight. My friend is frustrated as this extreme heavy menstrual bleeding has gotten worse as her daughter's illness became more severe.

I'm trying to find any research studies or medical articles that she can take to the hospital which will explain this. I thought I had come across something a few years ago, but can't seem to find it. Can any of you suggest any appropriate material which covers this specific issues - ME and heavy mentruation or very disturbed menstrual cycles - which my friend can show to the hospital medical staff?

I remember looking into this at one point. Here's the thread, and it's not a long one. http://forums.phoenixrising.me/index.php?threads/transient-bleeding-issues.42976/

Edit: pay especial attention when we get to talking about mast cells and heparin.
 

PracticingAcceptance

Senior Member
Messages
1,858
This thread is useful to me, thank you all for posting!

I have been having extra-painful periods recently. I had an ultrasound and I don't have fibroids, which are a common cause of increased period pain. The ultrasound lady said it was probably hormones that are causing the pain. I'm going to the dr this week about it.

Too much brain fog for those articles, will read later.

Have any of you gone on hormone contraceptions or something like that to deal with period pain? I'm hesitant to take hormones, but if it has a chance of making my CFS symptoms better, I'd give it a go.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Have any of you gone on hormone contraceptions or something like that to deal with period pain? I'm hesitant to take hormones, but if it has a chance of making my CFS symptoms better, I'd give it a go.

I take Vitex agnus-castus, which is indirectly progesterogenic. I find it helps with breathing issues. I take about 2.5-g per day (400-mg pills, 3x, twice per day).

You might also want to take a look at Actea racemosa (Cimicifuga racemosa) -- black cohosh. It's both used for muscle pain and useful for hormone regulation, making it especially suited to this sort of thing.

As I always say to anyone wanting to give a try to an herb, don't get any "standardized" extracts or pills. "Standardized" means "chemical X, purported to be active ingredient, added to the final formulation to increase the amount per dose". Issues are:

1) Chemical X may or may not actually be the active one
2) There may be 2 or more ingredients that have synergistic fx
3) Active doses may be lower for us

As always, remember I'm not an MD and this isn't medical advice.

-J
 

pattismith

Senior Member
Messages
3,931
Hello @concepcion ,

here what my own experience. I have dysmenorrhea and irregular cycles with irregular periods from 4 to 11 days, and sometimes heavy bleedings for a few days.

I discovered I suffer from low T3 syndrome (with all my thyroid lab values in normal ranges), so I started a treatment to fix this issue some weeks ago. It's too early to say if it fixes my cycle problems, but I have some hope it will.
 

PracticingAcceptance

Senior Member
Messages
1,858
I went to the dr and he said that the scan showed polycystic ovaries. I can't get diagnosed with polycystic ovary syndrome if I don't have any other symptoms though. I'm going to get my hormones checked.

My periods are quite regular - a bit less regular than they used to be, but still not crazy.

It is crazy how much blood I lose though. Even on tranexamic acid, and with a moon cup, I can still overflow. Before tranexamic acid, I had to change the moon cup every hour or two on the first or second day of my period, for about half a day. A moon cup holds 12ml! The average blood loss over an entire period is 30-40 ml. I'd lose that amount in a few hours. Goodness why do I feel like I'm showing off, it's hellish! And extra work in cleaning up :( :( ew.

One of the links in this thread says that women with ME may be more likely to have gynalogical issues. (argh how does one spell that?!)

Fuuuuuuuu**. I don't want to have PCOS. I really really don't. It's bad enough to be ill with one thing. I really don't want to have fertility problems one day when I'm ready for babies.

If it does transpire that I have PCOS, could taking whatever hormones to help treat that, help make my CFS/ME better?