When thousands of women complain of the same side effects from their contraception; when business is considering adopting period leave; when maternal morbidity and mortality is rising in the USA and the western world has abysmal breastfeeding success rates, we have a much bigger problem than any of those issues individually suggest.
Right now I have severe itching in my labia. It started the day after ovulation. I’ve had it sometimes before, always either right around ovulation, or during my period.
This time I googled it.
And unsurprisingly I found forum board after forum board of women saying that they have been suffering similar problems for years with doctor’s unable to find a cause.
There were a few people who had found a cause. Cyclic Vaginosis, a bacterial infection that can present a lot like a yeast infection, both of which are caused by the same problem - Hormone Imbalances.
But then came the second fight.
Insurance that wouldn’t cover hormone testing, because “you’re too young for menopause”. As if menopause is the only reason for hormone imbalances.
Doctors with no knowledge of bio-identical hormones, who stare at you blankly and think you’re crazy if you say no not Progestin - progesterone. They are NOT the same thing.
Doctor’s advising women to go on the pill for 6 months to “balance out” the hormones.
Doctors just telling women to just go on the pill full stop. Because that is their go-to solution for everything women’s health.
Women spending 3, 7, 20 years searching for a doctor who actually treated them.
And those were just the ones who were able to get a proper diagnosis.
Amongst the rest, there was a sub group of women who also experienced depression like symptoms either as a result of the pain, itching and decimation of their sex life, or at ovulation in general.
They had of course all been put on antidepressants. Which obviously had no effect.
I run a facebook help group for people on Effexor. Before I started my group, I was in another group that had a couple of thousand people in it.
The number of women who are on psychotropic drugs for mood swings, cyclical (clearly hormonal) depression, menopause or hot-flashes is insane.
Antidepressants for hot flashes. Seriously.
Just in case you’re wondering, that’s an off-label use. Neither the FDA or the TGA have approved antidepressants for that use.
But the thing is. None of this is at all surprising.
In the past couple of months, having started a new relationship, I started looking for non-hormonal contraception.
I did so because I spent 10 years on various iterations of the pill. Ten years in which I suffered a huge list of symptoms that my doctors could never find a cause for. I spent years feeling like a crazy hypochondriac, eventually I found forum boards and found hundreds of other women with the same complaints.
All sorts of symptoms that seem completely unrelated, and certainly aren’t listed on the medication inserts as possible side effects, like constant hay fever. But when you get a few hundred women who all say, “I get that too, you know what, it only started after I went on the pill too. And yes, I also have these other symptoms that everyone else is complaining about.” You can’t ignore the common denominator. The Pill.
So why are doctors so ignorant?
Why aren’t these listed as side effects?
The second question is easier to answer. It’s likely that they were dismissed as irrelevant by the pharmaceutical companies during trials. This may have been because they naively assumed that the symptoms were a coincidence. I mean after all, the pill causing hay fever, it seems ridiculous.
On the other hand, it may very well have been deliberate.
Like with Essure.
Essure in case you are unaware is an alternative to surgical sterilization. It’s a coiled metal device much like a copper IUD that is inserted into the fallopian tubes. The devices is non-hormonal, but it is covered in nickel. Something many women are allergic too. Allergy or not, it’s designed to cause irritation, the theory being that the resulting inflammation will close off the fallopian tube.
But what’dya know, turns out that causing women’s bodies to create chronic inflammation causes an immune-system response, which resulted in autoimmune diseases and or depression (which is also linked to chronic inflammation).
But during the clinical trials, women who reported complaints like constant fatigue, hair loss, chronic bleeding and pain were either ignored, dropped from the study, or their feedback questionnaires were altered.
The Essure story has mixed outcomes.
Thanks to a 20, 000+ women strong facebook group encouraging women to complain to the FDA, the FDA had no choice but to review the safety claims.
Amanda Dykeman, an admin on the Essure Problems Facebook group, describes how the group encouraged women to file adverse event reports with the FDA, accounting for the recent jump. “A lot of women don’t know how to do that or they don’t know they’re supposed to do that,” says Dykeman. “I kind of figured once enough were filed, the FDA would take another look.” The few members of the group have also met with congressional staff and the FDA in private, which also likely influenced the agency to hold a public meeting.
But, ultimately this did not result in the removal of the device from market, even temporarily for more testing/to improve it. It did result in a black-box warning and a massive downturn in sales. But really……. This device is causing women to have to have hysterectomies that they otherwise would never have needed.
A black box warning isn’t really good enough.
Essure isn’t the only “non-hormonal” method of birth control to have this kind of impact on real women’s health.
Paragard also known as the Copper IUD, has similar reports. (The difference is a lack of a central mobilising space like with Essure.)
Numbness in the legs and arms
Constant bleeding and or pain
Link - IUD Side Effects Facebook Group
Link - Paragard Don't Get One Facebook Page
Link - Copper IUD Side Effects Mothering.com Forum
And the women reporting them are regularly told by their doctors that there’s no way that the IUD could be the cause. It’s non-hormonal.
But all of the doctors Finan consulted agreed that she was physically fine apart from anxiety. All ruled out the possibility that the copper IUD was to blame for her symptoms.
Still, the attacks persisted. So Finan turned to the Internet. When she typed in keywords "copper IUD," "panic attack" and "anxiety," a website about a so-called copper toxicity syndrome caught her attention. Then she found a group on yahoo.com named "copperiuddetox."
"That group was a godsend," said Finan, who has gone almost one year without an episode since removing her IUD. "They understood what I was going through. I felt like I was reading a diary. I thought: This woman is me!"
The online discussion group included more than 600 women who shared their experiences with their copper IUDs. All mentioned similar symptoms, the same ones Finan had been fighting for weeks. She remembered thinking that it couldn’t just be a coincidence.
Yet Doctors and researchers seem very happy to chalk it up to coincidence.
Just because something follows something else in time it doesn’t in any way imply they’re causally related. There are always rafts of complaints about the side effects of both birth control pills and IUDs, and most of them are bogus. - David Grimes, a clinical professor at the University of South Carolina’s department of obstetrics and gynecology.
Those thousands of women would beg to differ Dr Grimes.
But there is no way of us reporting the problems we have to the drug makers. In the UK, there is a Yellow Card system Where anyone can report adverse effects of any drug or medical device. But the USA and Australia have no similar program. “Teva’s representative in the U.S. said that the company has never received any adverse report regarding copper in ParaGard.”
Our only hope is by doing what the women of Essure Problems did. Mobilising. But in doing that we face the disbelief of doctors and researchers like Grimes above, or Susan Rubin, an associate professor in the department of family and social medicine at Albert Einstein College of Medicine in New York, who says “There is no such thing as copper toxicity with an IUD,"
And this woman’s experience
I went armed with the warnings from many women on the forums who said, “Of course, my doctor said my mood issues had nothing to do with the copper IUD,” so I was expecting resistance.
I received disbelief.
“Why are you taking it out?” the doctor asked.
“I am experiencing debilitating mood issues from it.”
“That has nothing to do with the IUD,” he answered. “You can’t believe all of those online forums. And in all my 20 years, I’ve never seen a woman with copper toxicity. I don’t believe in copper toxicity.”
Twenty years ago doctors said the same about food allergies and intolerances.
They said the same about food issues worsening mental health.
Now the Microbiome research has skyrocketed gut health to the number one position in mental health research, with inflammation coming in close behind.
Twenty years ago Chronic Fatigue was just laziness and didn’t exist. Now researchers are working on a cure.
So sorry doctors, just because you “don’t believe something” doesn’t mean it’s not real.
When enough of the scientific studies haven’t been done yet, or the findings don’t reflect what all women experience, we find ourselves in a strange predicament. Feeling one way, yet being told that we’re not supposed to feel that way. - RIVKA NEHORAI
As I mentioned earlier, my research into Paragard was due to a new relationship. A few weeks after making things official my boyfirend (D) and I took our (separate) kids camping. Whilst away I got my period. I spent the day fossicking for Thunder Eggs, and doing a high ropes course with D’s daughter. The following day I packed up the tents and hung them all out to be hosed off when we got home. In other words it was life as usual. D was gobsmacked. At 30 years old he’d never dated or been close friends with a woman who didn’t spend at least 5 days curled up in a ball of pain.
PMS and painful periods are such a common occurrence in western society that many countries are now looking at introducing period leave.
In China however, there is a very different approach.
The Chinese have recognized for centuries something that western doctors are only just cottoning on to. That period health is the canary in the coal mine for women’s overall health. Instead of dismissing women’s symptoms as incurable or imagine, or covering them up with contraceptives and other drugs that simply mask the problem, Traditional Chinese Medicine treats the woman as a whole.
Different presentations of symptoms represent different source issues, TCM practitioners work to resolve the source issue, which resolves the symptoms as a result.
Last year, sick of still having severe cystic acne at 32, I sought out doctors specialising in natural hormone balancing in my city. I’d long ago identified that my acne was a carry over from the pill. I’d always had a tendency toward cystic acne, but my teenage experiences were never anywhere near as severe, widespread or persistent as my experiences on certain versions of the pill. Eventually I got put on Diane ED and the acne went back to pre the-pill levels.
Until i went off it entirely.
The first six months after going of the pill my skin went insane. I’m talking cysts the size of 20 cent pieces all over my face, back, buttocks, breasts and the most painful of all my vulva. A dozen or so at a time. And god did they hurt!!!! They would take a week to go down, but as soon as one started to resolve another took its place. They would expel huge quantities of greeny-yellow or greeny-grey puss for days on end. And then there was the “regular” cystic acne, and the blackheads and whiteheads.
It all very quickly stopped when I fell pregnant.
Throughout my pregnancy and for almost two years following my skin was back to what it had been like on Diane, or pre-the pill. Then I started ovulating again, and it got a bit worse. Then my period returned, and it got worse again.
No where near as badly as it had been after stopping the pill, but still persistent, painful, and far far more acne than anyone in their 30’s should be experiencing.
That was two years ago. It’s been that way ever since. I’ve started tracking it along with my cycle, I get a couple of good days a month, just after ovulation.
Very clearly hormonal.
So I tracked down this doctor, traveled five suburbs away and payed out of pocket, (because she didn’t bulk bill.) The first thing I said when she asked why I was there was that I needed a solution for my skin that didn’t involve the pill, antibiotics or Roaccutane.
I explained the history of my skin. How the pill started it all in the first place. I explained that i’d been put on long term antibiotics and given topical creams multiple times in the past with no improvement.
She tried to suggest putting me on the pill four times, and sent me off with a prescription for antibiotics and topical cream.
I could have gotten that at my regular GP.
I’d specifically looked for someone who was supposed to be knowledgeable in natural hormones because I knew from all my birth and breastfeeding advocacy that the average GP has no idea what they are talking about when it comes to matters of women’s health.
If they did, there wouldn’t be an epidemic of women being told that pumping output is an accurate indicator of breast milk production.
There wouldn’t be an epidemic of women being told to “just give formula”, that their “milk is like skim-milk”. There wouldn’t be an epidemic of women who wanted to breastfeed, but end up “failing”.
There also wouldn’t be an epidemic of obstetric violence, coercion and assault. We wouldn’t have rights violations being an accepted part of hospital birth. We wouldn’t have hospital and state policies that ignore evidence.
But we do.
Which brings me back to the question I asked earlier.
Why are doctors so ignorant?
The obvious answer is that they just aren’t trained in this knowledge.
But that off course begs the question, why not?
Why is is acceptable for our medical training courses to spend so little time on women’s health issues. Why is it acceptable for someone to graduate from specialising in obstetrics without ever having seen an evidence based, respectful birth?
Why is it acceptable for medical students to learn to do vaginal exams on unconscious women? A practice that has recently made waves online thanks to Amy Jo Goddard and the documentary she is making (At Your Cervix), but which a quick google search will show you has actually been talked about in major newspapers and medical journals for over a decade. This article is from 2003.
Why is it acceptable for dis-respectful care that ignores consent, ignores bodily autonomy, ignores evidence, and in any other setting would be called what it is - sexual assault, to be standard practice?
Why is it acceptable for breastfeeding women to never be referred to actual breastfeeding specialists? IBCLC's.
Why is it acceptable for hospital maternity ward staff and GPs to not know what Lactogenesis 2 is and that it can be easily identified with hormone screening?
Why is it acceptable for every form of semi-permanent birth control to have caused women’s deaths, as well as chronic health problems, infertility and hysterectomy, yet clinical trials for the male birth control injection were stopped because about six per cent of men experienced side effects, including depression, muscle pain, mood swings, acne and heightened libido. All things women complain about (although it’s usually diminished libido for women) and are expected to just put up with, or told can not possibly be related to the birth control.
Why is it acceptable for entire countries to require a prescription for a piece of silicone or to just not stock that same piece of silicone when it’s a diaphragm - a device that allows women truly non-hormonal, non-damaging control over their fertility?
When you add it all together, there’s only one possible answer. That misogyny is so entrenched in our healthcare system, that most people don’t even notice it.
Hi I'm Nicole