• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Irregular Periods

Messages
15,786
I've had irregular periods most of my life, usually on a 5-6 week schedule instead of 4 weeks, and frequently skipping a month (or two, or six). I got checked out for Polycystic Ovarian Syndrome a couple years ago, but lacked the required cysts :p

Is this a common problem with ME/CFS? It sounds like the prevailing theory for missed periods among athletes is now lack of energy (not low body fat or weird hormones), which could certainly account for it happening in ME/CFS.
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
It's the soy and estrogen in our foods. Any soy, including soybean oil, makes me bleed. If I dare to have dairy products, they too, will make me bleed, stain, you name it. I had cottage cheese a few months back and ended up with a massive bleed out for weeks where I was soaking pads every fifteen minutes. It was really scary. They put hormones in the milk products, even when they lie and say they don't, the cows the milk comes from have been heavily dosed with hormones and antibiotics and it gets into the milk. The soy they shove into all of our foods is loaded with estrogen. I get the same massive bleed out if I dare to have soy milk. It's guaranteed to give me bleeding bad enough that I belong in a hospital.

When I cut out as much soy as I can, and I cut down on the dairy products, I don't bleed or I get light periods. If I suddenly decide to cook and use a little soy sauce to flavor something, guaranteed to stain.
 

Calathea

Senior Member
Messages
1,261
I don't think that can be universally true, as countries with high soy intake in the far east have a relatively low incidence of hormone-related problems such as breast cancer or unpleasant menopause, at least until they adopt a more American diet. I'm guessing that you are sensitive to both soy and dairy - no one would be eating either if it were usual to experience the horrendous reaction you describe. I have no idea whether such sensitivities tend to cause hormonal reactions, but all I can say anecdotally is that I can't get on with dairy either, most notably because it makes my migraines worse, and my migraines are mainly hormonal. I don't recall any change in bleeding, cycle length or PMDD, however, and while my soy intake has varied over the years, the only thing I've noticed is that miso soup always raises my temperature and usually brings me out in a sweat.

Of course, it's probably more complicated than that. Perhaps there are certain forms of soy an/or dairy which are more likely than others to set off hormonal problems, say the more highly-processed forms? With dairy, global variations in farming practices could make a huge difference in the level of hormones present; no idea how that would work with soy, but presumably there are ways of chemically altering it which may be relevant here.

My history - periods always mildly irregular but on the short side of things, with my cycles ranging between 20 and 37 days in the last few years, averaging 27. I developed menstrual migraine when I was 15, four years before I officially got ME (though I did have some weird virusy thing from the age of 15 and somewhat patchy health), and PMDD when I was 28. I started doign Fertility Awareness Method charting a few years ago to keep track of the PMDD, so that I have some warning at least and can time treatments when appropriate, and discovered that I have a short luteal phase, typically 9-10 days. I've got enough things going on at the moment that my doctor wants to test me for PCOS, although I suspect that I don't have it as I am ovulatory and don't have particularly heavy or painful periods. I can recommend FAM if you're trying to work out what's going on with your hormones, as it can show up a fair number of things. At the very least, you know when the trouble is due to start, rather than being caught out without any pads or being unable to understand why you are suddenly feeling horrendously depressed out of nowhere. Right now I'm getting PMDD symptoms that started a bit earlier than usual and have kept going for nearly four weeks (no way am I premenstrual right now, I'm due to ovulate any day), but I can also see that my temperatures are a bit lower than usual and that they are a lot more erratic than usual, which suggests that my hormones really are all over the shop at the moment. We suspect my liver's at the root of this, since I have an unhappy gallbladder and am getting other symptoms such as itchy skin.
 

hurtingallthetimet

Senior Member
Messages
612
im getting irregular periods but think it may be more from my age...diffently very extreme periods at times since being ill....there are times it feels like im being stabbed with a knife it hurts so bad...but also ive been told i have ovarian cyst..didnt know that unitl i become sick either but i have no idea if its from the illness

hope you get alot of good advice
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
Calathea You just quoted one of the biggest myths and misconcepts about soy products. In Asia, they do NOT have a high soy/estrogen intake. They only eat about one to two tablespoons of soy per day, and they have a very low dairy intake. They do not suffer like westerners do because they aren't being bombarded with a diet high in soy and estrogen. You really need to do your research.

Everyday, the American diet is full of soy. Soybean oil, Soy Lecithin, Soy Protein, and many others. They shove it into everything. We are getting a hundred times the soy in our daily diet that any Asian would normally have. I realize you are NOT from my country, so you really do not know. People here have figured it out. They even told me the last time I had gyn tests at the hospital that many women here cannot have soy.

Our dairy products are FLOODED with estrogen, other hormones and antibiotics. And they have now introduced natamycin, an antifungal drug into the cheeses here. Our food is literally contaminated with all kinds of endocrine and hormonal disruptors. There is no mystery as to why we have irregular bleeding and other hormonal problems. The only mystery is in why people refuse to learn the truth of what is really going on in this world.
 

Calathea

Senior Member
Messages
1,261
Carrigon - Yes, I've done my research into Asian soy consumption, and I stand by what I said. Anyway, while I appreciate that you have unusually severe reactions to soy and dairy, very much worthy of investigation and discussion, and that these are commonly problematic in a number of ways, your particular response remains unusual rather than the norm. If everyone was haemorrhaging from even a tiny serving of soy or dairy, they would no longer be on the market in any shape or form.

To be honest, I think it's a bad idea to try to reduce any nation's health stats to a single component of their diet. Lifestyles are immensely complicated, diets are immensely complicated, and many of the food industries do their best to ensure that the stats out there are skewed beyond belief - which is why all of this is controversial in the first place. Other obvious potential culprits in the American diet (and could we please not assume that everyone here is American, or even that most of the Americans are necessarily on a typical American diet or that other folks are eating a diet typical for the area they were raised in or live in - I'm English living in Scotland, and I am definitely not eating either a typical English diet or a Scottish diet, neither of which are anything to write home about) are high levels of animal foods, particularly with artificial hormones as you pointed out; high levels of processed foods; a great deal of salt, sugar and fat; and most importantly, too much of it. Exactly why it's happening is still disputed, it's a complicated issue with a multitude of contributing factors, but I don't think anyone is disputing that obesity levels in America are high and still rising.

Which has made me remember that there's a strong correlation between weight problems and disrupted periods/hormonal problems, and that weight problems are very common in people with ME. Could anyone comment on whether they've noticed a pattern there? I was talking to a friend of mine last night, who has severe ME and is in the process of losing weight. She's lost 4st (28lb), she has 7st left to go (49lb), and she mentioned that her periods are finally regular again, instead of being spaced several months apart. If your weight drops below or goes above a certain point, your periods are likely to become rare or even stop.

I don't think my periods are any more or less irregular than when my weight was different, but the PMDD did start at exactly the same time that I suddenly put on a lot of weight for no apparent reason, and I've been told by several doctors that they are probably linked, since oestrogen is stored in fat cells. I'm in the throes of finishing losing the weight, and dieting itself causes hormonal disruption (when you burn the fat cells, the oestrogen in there gets released and has a little party), so it's still too early for me to see how my hormones will settle down once I've been back at my usual weight for a while.
 

Tia

Senior Member
Messages
247
I've had irregular periods most of my life, usually on a 5-6 week schedule instead of 4 weeks, and frequently skipping a month (or two, or six). I got checked out for Polycystic Ovarian Syndrome a couple years ago, but lacked the required cysts :p

Is this a common problem with ME/CFS? It sounds like the prevailing theory for missed periods among athletes is now lack of energy (not low body fat or weird hormones), which could certainly account for it happening in ME/CFS.

Yup, same here. Can't get pregnant either.
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
I've had CFS about 28 years and always had regular periods. They only go off schedule (always early not late) occasionally, when I get an infection like a bad influenza or gastro-enteritis. It has to be something about having certain viral infections that causes it in my case, because otherwise, they are perfectly regular.