u/Phew-ThatWasClose

AI is pretty annoying – but this one made me smile.

>If a woman's premenstrual rage or despair is driven by the severe late-luteal prostaglandin surge seen in primary dysmenorrhea, endometriosis, or fibroids, it is a physical phenocopy of PMDD

That was after I told it to quit patronizing me. :)

I recently wrote a thing about IUDs and how they “should” not help with PMDD and could easily make matters worse. Nevertheless I consistently see posts and comments on the other sub about how IUDs do, in fact, help with PMDD symptoms. Why is that?

Those women do not have PMDD. But it surely looks like they do.

According to the diagnostic criteria PMDD is any 5 of a possible 11 symptoms that “are associated with clinically significant distress or interference with work, school, usual social activities, or relationships with others.” PMDD has an extremely high misdiagnosis rate (40-80%) and there are many conditions that look an awful lot like PMDD. Dysmenorrhea is one.

Too often women don’t get a proper diagnosis and experience years of frustration trying to treat a disorder they don’t have. Many in the medical community are unaware PMDD even exists, or have old fashioned biases like “Oh, that’s just the new name for PMS.” Often women have to do their own research and become convinced they have PMDD because all the symptoms line up and when they finally find a doctor who agrees with them it’s like the sun breaking through the clouds. Doctors themselves, the ones that are PMDD aware, often just listen to a list of symptoms and say “Yep, sounds like PMDD.”

But just because it happens during luteal doesn’t mean it’s PMDD. That is why it is so important to get the blood work done – to rule out a host of other things it could be. Beyond the blood work look to the symptoms. Treatment recommendations are what they are because they help most women with PMDD. The recommendation is a mono-phasic Combined Oral Contraceptive (like Yaz) and a low dose intermittent SSRI. But some doctors know only one solution for anything to do with the reproductive system and that solution is Birth Control – whatever birth control is handy.

The reason COCs work for PMDD is they shut down the ovaries. Then the hormonal cycle that is driven by the ovaries stops and the PMDD that is driven by the changes in the hormonal cycle stops. IUDs do not have enough actual chemical in them to stop the ovaries from doing their thing and the cycle continues. For a woman with PMDD an IUD will not help. It can’t.

IUDs prevent conception by increasing the amount of mucus in the cervix so the egg cannot get through to the uterus and by thinning the uterine lining so there is nothing for the egg to implant in if it does get there. That second part is the key. IUDs make the uterine lining so thin there is nothing to shed during menses. There is no reason to have a period and consequently, even though an IUD does not stop her cycle, it does stop her period.

How can PMDD persist when she doesn’t have her period? This is how. She still has her cycle.

Dysmenorrhea is characterized by extreme cramping before and during menses. Often comorbid with heavy flow (menorrhagia) and subsequent anemia (low iron). The extreme cramping is caused by an overabundance of prostaglandins. Extreme as in traumatic. Extreme to the point of causing psychological distress. And the prostaglandins that cause the contractions (and the cramping) in the uterus … that helps to sluff off the uterine lining during menses … are manufactured by the uterine lining. No lining = no prostaglandins = no contractions = no period.

Dysmenorrhea is a phenocopy of PMDD meaning it looks a lot like PMDD but isn’t. It has a different cause even though the symptoms are similar. The contractions and cramping start a couple days before her period starts to begin to loosen the lining. It looks like a premenstrual disorder because it starts premenstrually. And the contractions are severe enough to cause psychological trauma. She’s raging because she’s in tremendous physical pain.

Fortunately treating for PMDD will also stop dysmenorrhea because if you stop the reproductive cycle with a COC you also stop menses. Not by thinning the lining but by stopping the lining from forming in the first place. No period doesn’t mean no cycle. But no cycle does mean no period.

Similarly for endometriosis and submucosal fibroids. Both are forms of secondary dysmenorrhea which just means it’s dysmenorrhea symptoms caused by something else. Or it’s a Premenstrual Exacerbation (PME) of a known condition that results in symptoms like PMDD.

Endometriosis is a condition in which uterine lining grows outside the uterus. “Outside the uteris” is the pelvic cavity where basically everything is and endometriosis lesions can grow anywhere. Depending on where they are the lesions can cause a host of symptoms including bowel and urinary pain, pain during sex, nausea, constipation, infertility, chronic fatigue, nerve pain, and radiating leg pain.

All that can be exacerbated premenstrually for the same reason dysmenorrhea is. The signal that causes the uterine lining to start producing prostaglandins activates the external lesions as well. The prostaglandins outside the uterus cause inflammation, chemical burns, pelvic bleeding and continuous, high-amplitude trauma signals sent directly to the brain. It’s the trauma that produces the Rage.

As the name implies submucosal fibroids are fibroids that grow under the uterine lining on the uterine wall. They are permanent (benign) tumors that can only be removed by surgery and they disrupt the normal activities of the uterus just by being there. The uterus detects them as a foreign invaders and tries to expel them during menses by jacking up the production of prostaglandins precisely so the contraction will be extra violent. It doesn’t work so the system will try again next cycle. And the next and the next.

For both endometriosis and submucosal fibroids inhibiting/stopping the growth of the uterine lining mitigates/prevents symptoms. So if a woman with one of these conditions is misdiagnosed with PMDD, and incorrectly given an IUD or POP as the Birth Control method to stop the “PMDD”, it’ll work. Multiple errors compounded to make a happy accident. The patient is cured!

That seems really unlikely. You’d have to have an idiot doctor making multiple mistakes stumbling across an actual fix for the wrong disorder Clouseau style. But it’s more common than you’d expect. Estimates are 50% to 90% of women experience dysmenorrhea. Of those 15% to 20% experience severe dysmenorrhea. Taking the low end of both ranges (50% of 15%) means at least 7.5% of menstruating women experience extreme physical agony before their period every single month.

Endometriosis impacts roughly 10% of women and takes an average of 7-10 years to be properly diagnosed. Typically those women are initially mis-diagnosed with a premenstrual mood disorder because symptoms appear like clockwork every time the uterine lining starts producing prostaglandins.

Fibroids impact 70% - 80% of women with about 30% being large enough and positioned so the body reacts. 30% of 70% is 21% of women worldwide have fibroids significant enough to cause secondary dysmenorrhea.

Combined about 30% of women who menstruate have intense, undiagnosed or untreated physical pelvic disorders that look an awful lot like PMDD. Suddenly I’m wondering why we don’t see more “PMDD” being “cured” with IUDs and POPs. Indeed PMDD only affects 2-8% of women and is a diagnosis of exclusion. It’s only PMDD if it isn’t anything else. So why aren’t these pelvic cavity disorders being actively tested for during the PMDD diagnostic process?

Mostly because it’s hard. Lesions and fibroids are both really difficult to detect short of exploratory surgery and dysmenorrhea itself has no physical presence, nothing to look for. But primary dysmenorrhea has a multitude of symptoms and secondary dysmenorrhea caused by endometriosis or fibroids has those same symptoms. The symptomology is where we can see the difference.

Unlike PMDD secondary dysmenorrhea can cause constant low-grade fatigue, backaches, and bloating even during follicular, as well as diarrhea and pelvic pain during luteal. Psychological symptoms are directly related to the traumatic physical pain of the disorder not the hormonal shifts in the cycle.

Lets wrap this up as I’m starting to confuse myself. Basically this:

If your SO has PMDD and an IUD cured it that’s great. Likely she does not have PMDD. Who cares? Whatever it was is cured. But keep all this in mind because eventually that IUD has to come out. She can just put another one in and go another 5 years but life goes on and things change so be aware. Talk to your doctor about tracking down the real cause of symptoms so you're ready when the time comes.

If your SO has PMDD and her doctor gave her an IUD and now she’s cranky all the time but has no period … likely she does have PMDD and her doctor is a doofus. Go read the other post about IUDs and why they don’t work for PMDD.

If your SO has been diagnosed with PMDD and is considering “birth control” talk about all this stuff. Specifically ask about symptoms like period pain, heavy bleeding, and diarrhea. Statistically it’s more likely to be some form of dysmenorrhea than PMDD.

If you do suspect dysmenorrhea try to rule that out. Typically, secondary dysmenorrhea has low-level symptoms all month (due to the underlying condition) then an extended, intense luteal flare. Primary dysmenorrhea has no underlying condition, so the only symptom is a short, but intense, luteal window - just one or two days before, and the first few days of, her period. Talk to your doctor about backing up two more days (starting day 24) and trying an NSAID, like prescription strength ibuprofen, to ward off possible inflammation caused by any excess prostaglandins. If that helps talk some more about possible endometriosis or fibroids.

Correctly treating the “PMDD” with a COC that shuts down the ovaries will also stop the dysmenorrhea if that’s what she has. But if what she has is secondary dysmenorrhea due to endometriosis or fibroids that is masking a time bomb. Symptoms disappear but the lesions or fibroids continue to spread and grow. Other causes of secondary dysmenorrehea, like adenomyosis, pelvic inflammatory disease (PID), and cervical stenosis are similarly masked by properly treating “PMDD”. It is important to get the diagnosis right so you treat what you have – even if the treatment ends up being the same damn thing.

But the single most important take away is this: IUDs do not help PMDD. If you read online about people who love their IUD because their “PMDD” symptoms went away don’t believe it. That’s fantastic for them but they should spend some time looking for the actually cause of their symptoms. If your loved one truly has PMDD and goes to the trouble and pain of getting an IUD fitted it will not help and will likely make things worse. At the very least try a mini-pill first to test for an adverse reaction before committing to an invasive semi-permanent procedure.

I intended to wrap it up six paragraphs ago. Sheesh. Does anybody have any questions?

Obligatory disclaimer – since apparently this is necessary now. Most women with PMDD are not Ragers. Most women with PMDD are not Abusers. PMDD doesn’t cause abuse. But PMDD can open the door, and here we are.

There is a second negative review of the book, this one written by a human. If I can follow the logic the basic premise seems to be you’re not allowed to say anything negative about your abuser if she also has PMDD because someone else with PMDD will think you are accusing them of being an abuser and then commit suicide.

It’s pretty twisted and I’m fairly confident it’s the same woman who once accused us, as a group, of forcing (her word) women with PMDD to not talk about anything substantive during luteal. At least I hope it’s the same woman – otherwise there’s two of them. But to be clear nobody is forcing anybody to do anything. Including – nobody is forcing partners to engage in conversations they don’t want to engage in. She can talk all she wants, but you don’t have to be there.

To be honest there are more than two. At this point I count at least seven, but I would estimate more like twenty. A small but vocal minority of women with PMDD hate the whole idea of a book centered on partners because it doesn’t talk about how awful PMDD is for her. They’ve hurled all kinds of accusations like the book overgeneralizes, stigmatizes, speaks in absolutes, portrays all women with PMDD in the same negative light, etc. Furthermore it’s not balanced, doesn’t take the science into account, gets the science wrong, is too blamey, pushes for accountability while also infantalizing the women by having the man manage the condition … just a lot of bad faith and emotional reasoning.

I won’t go into why all those accusations are off base because you can just read the book for yourself. It’s free. But I do want to touch on one thing … It’s worse for her.

So what? Is that really going to be the cornerstone of your position? That’s where you want to plant your flag? It sucks for everybody! But you want to claim the high ground because it’s slightly worse for you? Two things can both be true. My pain doesn’t decrease when you belittle it. If anything that’s part of the problem. We’re both in pain but only one of us is trying to do something about it.

Which is my second point – she can do something about it. We are here, on this sub, seeking advice and support from strangers, because we have tried everything we can think of and it hasn’t helped. In many cases what it hasn’t done is ... it hasn’t gotten her to do anything at all to help herself. If she felt better maybe she wouldn’t lash out so much. But in many cases she won’t even acknowledge there is a medical issue to consider.

So we’re left to fend for ourselves by taking a time out, or distancing, or shutting down. Then we get accused of disrespecting, or triggering her RSD, or stonewalling, or being avoidant. No shit Sherlock. Who wouldn’t want to avoid that garbage. I’m supposed to be “securely attached” while you tell me how awful I am for two weeks straight?

Which brings me to the third point – Is it though? Women with PMDD frequently report gaslighting themselves during follicular into thinking it wasn’t that bad. Symptoms like fatigue, overwhelm, and brain fog can contribute to misremembering. Certainly a lot of partners here report their PMDDer flat out denies having ever said or done the things she said or did during luteal. Again – not everybody – but here, in this context, luteal amnesia seems to be common.

Moreover, as HS pointed out two years ago (linked above), the hormonal cycle that caused all the chaos during luteal now makes her feel great during follicular. We have no such hormonal boost to help us “get over it”. It’s a disorder, a medical condition, so “don’t take it personally”. But that is a big ask when the PMDD makes it very personal indeed.

All of which is to say … we’re in this together, equals, a team. The couples that make it are the ones that can work together against the common enemy. If half the team is AWOL, or worse, discounting and belittling the other teammate, we’re doomed. Who has it worse is largely irrelevant. What can we do to make it better?

I was recently told that I “got the science wrong.” No help, no pointers, no advice, just a reprimand. Then I got accused of a bunch of stuff I didn’t do and called a “motherfucker”. Ahhhh, good times. Nevertheless I’ll try to get this in the ballpark and if I make a mistake I hope someone will correct me. Only without the drama.

The RCOG treatment tiers are what they are because they help most women with PMDD. PMDD has a fairly high misdiagnosis rate (estimates from 40-80%) which can also lead to treatment not helping, or the “wrong” treatment working great. Treating for PMDD when you don’t have it won’t help and accidentally treating the thing you do have will help. Add to that the reproductive system is shamefully understudied and really really complex and there is a great deal of variability in how women react to treatment.

Nevertheless there are these recommendations that are based in science and “should” be the first thing to try. But you have to get it right and the recommendations themselves are fairly cryptic. I’ve written about this before, probably will again, today let’s focus on hormonal IUDs and COCs. Copper IUDs just prevent pregnancy by being an effective spermacide. They do nothing for PMDD so we’ll ignore those.

TL;DR: Hormonal IUDs are crap for PMDD, as are many COCs

The idea behind introducing birth control is to eliminate the rise and fall of the hormones during the reproductive cycle. By taking a mono-phasic Combined Oral Contraceptive continuously the changes that cause PMDD symptoms are muted (if the ovaries remain active) or even eliminated (if the ovaries are shut down completely).

But a daily pill is a task. I can relate. I have a life threatening medical condition and I barely manage to take my pill a third of the time. IUDs are attractive because one office visit and a week or two adjusting and you’re set for years.

There are several reasons hormonal IUDs are not recommended for PMDD. The first is they are all progesterone only – not combined. That means if the ovaries do shut down there is no estrogen and estrogen is vital for all sorts of things, not the least of which is the immune system. But that’s a different post.

But truth is IUDs don’t shut down the ovaries. They lack enough actual hormone to do so. They work by thickening the cervical mucus so the egg can’t reach the uterus, and by thinning the uterine lining so the egg can’t implant if it does get there. So the ovaries are still working and the cycle continues.

Doctors will tell you (her) that IUDs are great. They are a really low dose of progestin, about a fourth of what is in a COC, and that works because it is local to the uterus. It’s right there. And very little makes it into the blood stream. And even if that were true … PMDD is a neurological disorder! So treating it with something that by design doesn’t affect the brain is … a little stupid.

And the progestin all of them use is levonorgestrel. All of them. In the US, Europe, Australia, Japan, China, India … all of them. And levonorgestrel is about the worst thing for PMDD. Wildly popular and effective for birth control, crap for hormone based mood disorders.

For starters Levonorgestrel is a synthetic progestin derived from testosterone. Yes that testosterone. The very hormone blamed for excess aggression in men. Consequently levonorgestrel has high androgenic (Man-like) properties. It increases the chances of side effects like acne and unwanted hair growth. That’s the canary in the coal mine. Visible symptoms that are easy to quantify. Science won’t say, but I have a hard time believing levonorgestrel doesn’t also cause mood changes. Anecdotal data from both subs supports that conclusion.

Levonorgestrel also has high “progestogenic” properties. That means that among progestins levonorgestrel is especially potent. About 50x-100x more potent than natural progesterone. This is part of why it’s ideal for IUDs. A low dose goes a long way so an IUD can last 5 years or more. But it also means that it’s a sledgehammer for folks with a sensitive system. It’ll bind to the progesterone receptors and not let go, leaving the natural (better) progesterone out in the cold. Rather than augment it will take over. So the thing derived from testosterone is in charge and science is bold enough to tell you high progestogenic properties can increase the chances of side effects like mood changes, fatigue, depression and weight gain.

All these factors combine to shatter the myth that IUDs are local to the uterus and therefore won't affect the brain. Levonorgestrel is 50x-100x more potent than natural progesterone so a little goes a long way, and at least a little does get into the bloodstream. And levonorgestrel, like all steroid hormones, is fat soluble. That means the blood/brain barrier does not exist so the levonorgestrel has free reign.

Many COCs also use levonorgestrel as their progestin. The dose there is about 5-10x the dose in an IUD and they will effectively shut down the ovaries. But the sledgehammer analogy still applies. Now there is an extremely potent progestin, derived from testosterone, just dominating the system. Anecdotal reports are often "Now she's just angry all the time." Gee - I wonder why?

Meanwhile Yaz is specifically recommended by RCOG, and the only COC approved by the FDA for treating PMDD, because it contains drosperinone as it’s progestin. Drosperinone is a fourth-generation (“newer” per RCOG) progestin that is derived from spironolactone. Spironolactone, in turn, is a diuretic. Drosperinone inherits Antimineralocorticoid properties from this lineage. That means it helps prevent bloating.

But also drosperinone has low progestenic properties, so it will augment instead of taking over, and anti-androgenic properties. The latter means it actively binds to the testosterone receptors, blocking the natural testosterone from binding, to help reduce agitation, irritability, and aggression.

That said drosperinone is still a synthetic progestin. Some women just don't tolerate a synthetic so even Yaz or Yasmine (same thing but 50% more estrogen) can cause an increase in symptoms. For some.

The birth control page at the other sub’s wiki has a chart with all the progestins listed. Highly recommend looking up the progestin in your loved ones BC and checking the chart.

Is very exciting. Somebody really hates the book.

I mean they really, really ... really ... hate the book.

They hate it so much they spent a good ten minutes prompting some A.I. to write a scathing four paragraphs. And let me tell you that A.I. didn't hold back. It got virtually everything wrong but ... with confidence!

You should read it. The review - I mean - but also the book. :)