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It’s Not All In Your Head: Mental Health and Hormonal Birth Control

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Mental Health Birth Control

Once upon a time, a 26-year-old woman went to her doctor and asked to be put on the new birth control pill that allowed women to only have four periods a year. She had seen it advertised on television. Four months later, 15 pounds heavier and suffering from mild depression, she returned to the doctor feeling miserable. The doctor told her the weight gain and depression were not from the pill because those were not side effects of hormonal birth control. Wait, does this sound familiar? It’s the same story I told in my article about hormonal birth control and weight gain. Only this time, I’m talking about mental health.

The truth is that I gave my mood changes and my mild depression very little thought. Once the doctor told me they were not a symptom of my new birth control pills, I figured it was my fault I was sad and not dealing with things very well.

What They Knew in 1970

I remembered the connection between my birth control pills and that bout of depression when I began reading the Nelson Pill Hearings. One of the first doctors to testify pointed out that there had been a suicide during the original pill trials in Puerto Rico. Neither the suicide, nor the other three sudden deaths (of five total deaths during the experiments) were investigated. But what really got my attention was that the page after the mention of the suicide was the only one missing in the nearly 1500 pages of testimony. I have since been able to get a copy of that page and while the testimony doesn’t seem that damning given the laundry lists of risks, concerns, and dangers with hormonal contraceptives that are examined at the hearings, it does bring up an interesting point.

Doctor Edmond Kassouf’s testimony answers questions from Mr. James Duffy, minority counsel at the hearings (page 6112):

Mr. Duffy:  One of the five deaths was suicide.

Dr. Kassouf:  Yes.

Mr. Duffy:  So what I would like to understand is how does one take a suicide and link the case of death to the pill?

Dr. Kassouf:  Very simply. It has been of current concern. Many physicians and psychiatrists are concerned about depression and the pill. If this is true, suicide may well be the end result of that combination and, therefore, a reasonable suspect, a reasonable link.

Suicide Attempts While on the Pill

“I’ve really got to look into this more,” I thought. Well, I had to look no further than page 6447 and the testimony of Dr. Francis Kane, Jr., Associate Professor of Psychiatry at the University of North Carolina. To sum up his testimony about the studies conducted with regard to mental health and oral contraceptives, he says this (page 6457):

“There is considerable incidence of mild to moderate psychiatric morbidity [disease] associated with the use of combination oral contraceptive agents… In three of the four studies, there seems to be agreement that those who have required psychiatric care in the past will be more at risk for the development of morbidity, including psychosis. One study also suggests that there may be some increase in the depth of illness the longer the medication is taken.”

Dr. Kane describes a study conducted in England of 50 women on oral contraceptives who were compared to a control group of 50 women who had not used hormonal contraception. There were no differences in socioeconomic status, age, or history of past depressive episodes. But in the group taking the pill, 14 women “had depression of mild to moderate proportions, while only three of the control group reported this.” The pill users also reported greater depression as well as particularly high scores for “guilt, self-absorption, and loss of energy.”

He goes on to say, “Two suicidal attempts in the pill sample were found, which had not been disclosed to the general practitioner. Since completing the study, another depressed pill-taker had made a serious suicidal attempt.” Three suicide attempts in a study of 50 women? That seems incredibly high to me. Ludicrously high. Especially given that there are other methods of contraception.

But Wait, There’s More!

But that’s just one doctor testifying about a few studies, right? Sure. But the next person to testify was Dr. John McCain (not the senator). One of the first things the doctor points out is (page 6471):

“The contraceptive pills are potent steroid hormones. Alterations of the anterior pituitary function are produced by them… the potential endocrine and systemic disturbances are almost unlimited. The effects produced through the anterior pituitary may be so indirect that years may elapse before a correlation is established between the abnormality and the administration of the contraceptive pills.”

You know what else is a hormonal medicine? Anabolic steroids. “Roid rage” is pretty well documented. Is it really such a leap to think that hormones in birth control can also cause changes in mental health?

Dr. McCain spent years documenting the patients in his practice who suffered serious side effects from hormonal contraception. In that time, he recorded episodes from 52 patients. And per his own testimony, his largest concern was mental health (page 6473).

“The emotional or psychiatric problems are the complications which seem to me to have the most serious potential danger. Three patients have stated that they were desperately afraid that they were going to kill themselves… After the pills were omitted, the depression and suicidal fears of the three patients disappeared, as did the depression of the other patients.”

He also points out (page 6473):

“It is disturbing to consider the patients on the pills whose depression may have ended in suicide and/or homicide with no recognition of any association with the contraceptive pills… Personality changes could be a factor in other conditions such as automobile accidents and divorces.”

Is it really so much of stretch to think that a potent steroid could cause personality changes that could lead to the damaging of personal relationships that are beyond repair? Plenty of other potent substances can and do.

What They Say Now

Dr. Kane and Dr. McCain, as well as every other expert who testified at the Nelson Pill Hearings, agreed on one thing. More research was needed.

So what does the research say now?

Medscape published an article from the American Journal of Epidemiology with the claim that “Hormonal contraception may reduce levels of depressive symptoms among young women.” Yet when you read further into their conclusions, they say that nearly one-third of women discontinue hormonal contraceptives within the first year, many because of mood changes, and those women are unlikely to restart hormones. Therefore, “hormonal contraceptive users at any time point may be overselected for less depression than nonusers.”

The study also points out that:

“Existing literature on hormonal contraception and depression has been primarily confined to small, unrepresentative samples. Among these smaller studies, few cohesive findings have emerged.”

And:

“Little research has examined the role of exogenous hormone use in suicidality, and existing research has focused on mortality from suicide rather than suicide attempts.”

And according to WebMD, there are a laundry list of medications that can cause depression. What is not included on this list? Birth control pills. The only hormonal contraception included is Norplant. Interestingly enough, the active ingredient in Norplant is levonorgestrel, a progestin found in many birth control pills as well as hormonal IUDs. So am I supposed to believe that when injected into my arm, synthetic hormones can cause me depression but when taken daily as a pill or sitting in my uterus for 5 years, they won’t? Does that make any sense at all?

It doesn’t make sense to Dr. Kelly Brogan. That’s why when she has patients that complain of depression, anxiety, low libido, mood changes, weight gain, etc. she recommends they stop using hormonal contraception.

What Have We Learned?

  • Hormonal contraceptives can cause mental health issues
  • Women who suffer from mental health issues are much more likely to suffer from increased symptoms when on hormonal contraception
  • Often the longer hormonal contraception is used, the greater the symptoms
  • Discontinuation of hormonal contraception can usually alleviate mental health symptoms
  • The research promised from the Nelson Pill Hearings has never materialized

Why, if they knew in 1970 that hormonal contraception was deeply connected not only to depression but also to suicide, has it not been further researched? It’s been nearly 50 years since Dr. Philip Ball (page 6493), a specialist in internal medicine, testified before congress. Which makes what he says all the more chilling.

“It is not considered reasonable that there be any mortality or morbidity in a pill used purely for contraception purposes. Medical research has got to offer something better than this. Physicians will probably look back on the contraceptive pill era of the past 5 years with some embarrassment.”

Exactly.

We Need Your Help

Hormones Matter needs funding now. Our research funding was cut recently and because of our commitment to independent health research and journalism unbiased by commercial interests we allow minimal advertising on the site. That means all funding must come from you, our readers. Don’t let Hormones Matter die.

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This post was published originally on Hormones Matter on June 22, 2016.

 

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A Life Well Cried

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tears

I sat in the large cafeteria, teetering on the edge of a folding chair along with rows of other teeth-clenched parents as we helplessly witnessed our twitchy offspring entrenched in the prime time drama of a grade school spelling bee. A heady smell of meatloaf permeated the air. My 8-year-old son, who now stood at the microphone for his turn at spelling stardom, had been practicing for weeks; the only other thing he’d ever focused so diligently on before this event was coming up with the mother of all Chanukah toy wish lists.

But even after he eventually misspelled a word and humbly took his seat, I still felt wracked with wild nerves. Forget butterflies in the stomach! What I had was a dire case of Godzilla bitchslapping Mothra in my gut. I quickly caught sight of the bathroom with the word GIRLS and the quaint, skirted figure underneath. A ferocious growl gurgled from the deep depths of my gut. I half-expected the moderator to suddenly give me a few words to spice up the competition. Can Mommy spell Irritable Bowel Syndrome?

The anxiety worsened every time a child lost a chance at the winner’s golden trophy. Andy Warhol said everybody gets their 15 minutes of fame, but these poor spelling bee suckers were as done as a basted Thanksgiving turkey. My heart burst with empathy for these young dictionary gladiators. I fully expected I’d break the silence with soap opera-worthy sobs that any second now would echo off a hundred metal lunch trays.

Finally, the suspense was almost over. The spelling bee had been whittled down to two sweet boys, grinning from ear to ear poking out of identical bowl cuts approved by mom’s with kitchen scissors the world over. I gaped upon them, barely keeping a poker face. Oh my God! How do people DO this? What are we? Spelling enablers? How can we all just sit here and clap?

At last one competitor stumbled over a few pesky vowels and consonants and with that, a winner was born. Second place graciously shook hands with first and didn’t even sniffle or wipe a tear he could convincingly blame on seasonal allergies. I’m glad everyone was all Pollyanna about it, ’cause I was hella ready to rush the stage and bury the losing boy’s face in my heaving bosom. You see, I wear my heart on my sleeve now, and occasionally- well who am I kidding- all the time- it spills out of my baby blues in copious, unabashed tears.

But not then. And why not?

Trails of Tears

Maybe my not crying then all started when I was a kid. My dad’s go-to response when any one of his four children started wailing over some mini-unconstitutional injustice? “Stop that cryin’ or I’ll give ya somethin’ to cry about!” Usually that did the trick and shut us up. But now I reminisce and wonder why. Was it instant shame or guilt that freeze-dried all those melodramatic tears? And who was the appointed judge who could deem our sorrows unworthy of complaint via a rowdy cry-fest?

Is weeping selfish? A waste of good life? No! Everybody bawls, everywhere. Humankind’s trail of tears stretches from outer space, to Washington DC, from parched crops to suburbia. Spend one hour at any Disneyland theme park and you’ll see more beet-faced kids screaming in endless lines than Mickey Mouse has fingers (including middle ones!). In fact, the same parents who must claim those crying kids are likely using tremendous amounts of energy just to simply blink away the threatening onslaughts of their own ugly cries. As moms and dads wrestle with their demon-possessed kids’ full-blown tantrums, they fantasize about the cold rum glistening in the hotel room’s mini bar and the warm bed awaiting them with turned down crisp linens from the attentive maid. A little free HBO cures most woes.

But even Noah and his humongous, DIY- envy of all on Pintrest- ark wouldn’t have been able to handle the weather of history’s epic wave of accumulated tears. All humans from Jesus to gods and goddesses to Buddha have lost their shit- and rightfully so! Who would have had the chutzpah to tell them they had no business feeling bummed? Innocent civilians weep as they work through the wreckage of their lives warring nations have brought to their front door. Soldiers on both sides of these battles suffer PTSD nightmares and wake in terrified tears at what they’ve witnessed. Surely, they don’t need to be given something to cry about?

Truth is, no scale exists for weighing a person’s right to weep. If it feels real, that should be enough. No apologies necessary. No explanations needed. And maybe you’ll get over it, at your own pace; then again, maybe not. And why not let the wails rip, and take it a step further: Allow the flow from your unblocked tear ducts to remain on your cheeks. Feel them glisten and then dry in streaks under the warmth of broad daylight. Resist the urge to grab a tissue or even to use a shirtsleeve.

Seconds after your mother’s womb birthed you, you were encouraged to cry. At the start, that first barbaric newborn yawp was a sign of health. And now if you have strong lungs and all circulation pathways open, your orchestral vocal chords are still tuned and ready for the conductor’s cue. The only difference now is that you can call the shots for if – and when – your tears fall.

Today’s world demands you to get hardened to its rough ways, to crust over the gorgeous, glittering geode of your soul with barnacled rock. But what if you refused to let that happen? What if you became softer instead? You wouldn’t die in that moment. The world wouldn’t end because you allowed yourself a little release. You can build your own wailing walls – because you know best when to demolish them.

That’s the best holistic advice I think anyone can give you. It’ll even work with a placebo! Whether you’re at the movies and it’s the hero’s tear-jerking death scene, or if you’re on the last page of a gripping novel, why not go ahead- and sob like a wounded banshee? When it’s Ladies Night and your drunk friend trips in her stilettos and falls smack dab in the crosswalk, laugh ’till you howl, let your tear stream full force and smear mascara in its wake. After a bitter break-up and afterwards a revelation that you can love again- you WILL- because it’s your right – you’ll proudly weep.

Always be the only one to “give yourself something to cry about,” and beware of others who believe they can wield that power for you. When at last you run out of time and teary opportunities, you can be sure that there – on your deathbed – you’ve lived a life well cried.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.   

This post was published originally on Hormones Matter in November 2015. 

 

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The Real Risk Birth Control Study: Take Charge, Find Answers

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Birth Control Blood Clot Study

I recently read an article about how fewer women are taking birth control pills now. The article claimed:

“The reasons behind the shift are hard to pin down. Study after study has shown the pill is generally safe for most women, and is 99 per cent effective with perfect use. The pill’s safety has only improved since it was introduced in 1960. It is perceptions that are changing.”

This is completely untrue. It wasn’t safe in 1960 and it certainly isn’t any safer now. It’s also not true that study after study has shown it to be safe. At the Nelson Pill Hearings, the 1970 congressional hearings on the safety of the birth control pill, every doctor that testified agreed that more research was necessary. Yet, every modern study I have found (from research on depression, weight gain, diabetes and more) has said that even more research is necessary to make any conclusions. So in the 46 years since, we still don’t adequately understand the risks with hormonal contraceptives. Dr. Paul Meier, who testified at the hearings, spoke about the challenges of conducting said research:

“Of far greater concern to me is the failure of our governmental agencies to exercise their responsibilities in seeing to it that appropriate studies were carried out… Frankly, the required research, although important, is not especially appealing to scientists. It is not fundamental and it is not exciting. It is difficult, it is expensive, and it is fraught with the risk of attack from all sides.

Evidently, for whatever reasons, there is no sound body of scientific studies concerning these possible effects available today, a situation which I regard as scandalous.

If we proceed in the future as we have in the past, we will continue to stumble from one tentative and inadequately supported conclusion to another, always relying on data which come to hand, and which were not designed for the purpose.”

We can see that what Dr. Meier warned against is exactly what has happened. Experts testified in 1970 that the pill was linked to depression and possibly suicide. They warned that the pill should not be given to women with a history of depression. Yet, in 2004 when I was depressed after switching my brand of pill, my doctor told me that wasn’t a side effect. It wasn’t until last month that a European study on hormonal contraception said what no American study has dared. The pill is irrefutably linked to depression.

Unfortunately, depression is only ONE of the side effects of hormonal birth control. Obviously, blood clots are one of the most dangerous and why we are looking at them with this research study. Other side effects that were warned about at the Nelson Pill Hearings but for which the current research claims even more research is necessary include: diabetes, weight gain, cancer, loss of libido, urinary tract and yeast infections, lupus, infertility, hypertension. So no, studies do not actually show that “the pill is generally safe.” What studies show is that there STILL needs to be more research. Well, if they haven’t done it in the past 46 years, when are they going to do it?

As for the pill’s safety improving, just look the increased risk with newer formulations. Third and fourth generation pills have significantly higher risk for deadly blood clots.

“The problems with Yaz and its sister pills stem from drospirenone, a fourth-generation progestin.

After years of blood clot reports, the U.S. Food and Drug Administration (FDA), reviewed studies on oral contraceptives and found that an estimated 10 in 10,000 women on newer pills will experience a blood clot versus 6 in 10,000 with older pills.

Another study conducted by the French National Agency for the Safety of Drugs and Health Products (ANSM) found that birth control pills were linked to more than 2,500 cases of blood clots annually between 2000 and 2011. But third- and fourth-generation pills were responsible for twice as many deaths as earlier pills.

Two studies appeared in the British Medical Journal in 2011 and indicated newer pills were two to three times more likely to cause blood clots.”

Why would the pharmaceutical industry make newer birth control pills that are less safe? Maybe because once the patent runs out on medication they don’t make as much profit. So they change the formula and market it as a new and better pill. As history has shown though, there never seems to be enough research done before these products are approved. And women are paying the price. Dr. Ball warned of this at the Nelson Pill Hearings when he said (page 6500):

“Each time we change the dose or the chemical, you have a whole new ball game statistically, and then a long period of time has to go by for evaluation. Again, is it going to be just this unscientific, hand-out-the-pills-and-see-who-gets-sick business, which I say is wrong and which has been done. Each time there is a new pill, there is a new problem.”

Alas, that’s exactly the business that’s been taking place. Throw in the fact that doctors often dismiss the complaints from women as psychosomatic and you have a recipe for a completely misrepresented medication.

I don’t know about you but I’m tired of being a rube for the pharmaceutical industry. If we want to know what’s really going on with hormonal contraception, we’re going to have to start looking at it ourselves. We can’t wait for the government or the pharmaceutical industry to provide us with perfectly funded, unbiased research. They haven’t done that in the near 50 years since the Nelson Pill Hearings and there’s little indication they are going to start now. That’s why we’re conducting this research ourselves. We need information to help women assess what their REAL RISK is for taking a medication. Not what their doctors are telling them based on studies conducted by the pharmaceutical industry. The aim of this study is not to take away contraceptive options but to provide more accurate information about which women may have more risk for serious side effects like blood clots and which forms of hormonal contraception may be more dangerous than others.

It’s time to take charge of our health and find our own answers. That’s exactly what this research hopes to do but we need your help to do it. Please participate. And please share our study with those you know who might be willing to help. Thank you.

Take Charge: Participate in the Birth Control and Blood Clots Study

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

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Breaking the Chains of Depression

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breaking the chains of depression

Depression and Loss

It took months to get me out. My girlfriends had all but given up on asking me to join them.  I started my journey out when a girlfriend said to me in frustration, “He died of cancer.  But even with cancer, he still tried to live his life each and every day. You? You’re dying a slower death and for no reason.”

She was talking about my brother who had lost his life to cancer. I had two brothers and both passed within three months of one another. My other brother died of a stroke.

She was right. I was existing day to day. I definitely was not living. And as a consequence, every aspect of my life suffered, personal and business. But how do you talk to someone, anyone, about the darkness? The loneliness? The emptiness? How can anyone related to what you’re going through?

I started turning into a victim. Poor me. I can’t pull my business out of the toilet because I don’t know how. My husband is to blame for many of our problems because he won’t talk about anything with me. My weight – I’ll start working on tomorrow, I’m just too tired right now. But the reality of my life was, I gave up. I no longer cared. I decided to let life happen to me, not for me.

My story is not so unusual to read. In fact, current statistics show 1 out of 20 people aged 12 and over suffer with depression. And, 1 out of every 10 people are taking an anti-depressant for greater than 10 years. The stigma surrounding depression leaves most people not willing nor able to talk about their sorrow to another thus leading them into even greater isolation and loneliness. Those that do come forward and try to talk to others about it tend to do so shyly. Almost as an embarrassment.

When my girlfriend confronted me about my indifference I was extremely embarrassed. And I apologized…to her. Looking back now on the scenario, I actually should have been apologizing to myself. But we don’t do that, do we? No, we don’t. We find more faults to convince ourselves of our imperfections, and tend to hate ourselves even more, leading us farther down into the rabbit hole.

I call this rabbit hole a prison. It’s a prison that we create for ourselves in which for many, there is no way out…and no party. The chains that holds us prisoner are not visible to anyone but us, yet its rippling effects are felt in all aspects of our lives.

Depression Hits Everyone – Even Physicians

For those of you that may not know this about me, I’m a functional medicine practitioner. My specialty is working with women with hormone imbalances and autoimmune diseases. So, you would think that someone like me would never get depressed, never gain weight, drink, have poor sleep, or the host of other complaints that come along with depression.  But I did.

When I was battling my depression, I didn’t wake up one morning by myself and say, “Hey, I’m depressed.” Not at all. I would wake up every day and keep to my routine – or so I thought.

I recognized I was sad (after all, I lost both my brothers, a woman I considered to be a second mother to me, I was involved in an armed robbery, stressed to the max from business, and the holidays were upon me) but I truthfully didn’t fully understand just HOW depressed I was. Nor how much it affected everyone else. I would have what I call ‘mini-meltdowns’ about once a week.

Yet, I didn’t see it. I couldn’t see it. I was too busy trying to tell myself that everything was okay and it was just stress. Now again, as a functional medicine doctor you would think this realization alone would be enough for me to act, because stress destroys us from the inside out. And I’m big on eliminating the damaging effects of stress on our bodies…but not my own. I frankly, didn’t care.

I’m telling you this to make you think. Are you repeating some of my actions? Are you just going through the motions of your life? Do you feel frozen in one spot or no longer care about what happens to you or those around you? Are you indifferent?  Angry?  Lonely?

Do you like who you are and where you’re at? Are you satisfied or fulfilled with your life?

Digging Out From Depression

So how do you start to live a life worth living? The old adage, “One day at a time” has never been truer.  You take one day, every day, and tell yourself you can. I admit, when I started to break the cycle, and it is a cycle, it was extremely hard. In the beginning, it was a chore. I didn’t believe it.  And yes, I had set-backs.

But I started. I wanted my life back. I wanted to live joyfully and openly. I kept telling myself, ‘healer, heal thyself’.  And so I did.

I started giving my body what it needed but more importantly, I eliminated what it didn’t.

I started writing again.  Throughout my life, I’ve kept journals.  I would put in my journals my fears, my frustrations, my dreams, my goals…some days it was a stretch to write anything good.  And on those days I gave myself permission to just vent.  To be angry.

In the beginning, I vented a lot.  And I gave myself permission to have my pity parties and feel like the victim.  I gave myself permission to feel sad.  But better still – I gave myself permission to feel happy. And after about a week or so, I started changing other things. I stopped drinking to numb my pain and amazingly enough my sleep improved. With the improvement in my sleep, I had some energy.  So, I started walking again.  And when I started walking again, I started saying my affirmation again. With my affirmation came the desire to keep going and improving my life.

Feed the Body So the Brain Can Heal

I incorporated supplements to feed my body and brain and help bring my brain’s chemistry back in line with what it needed. A big player in your health and brain chemistry is sugar handling. So I eliminated sugar, grains, and dairy and increased my intake of healthy fats.

And with time, I won. I no longer fight with the chains or the rabbit hole. And my hope is you don’t either. You’re worth the fight. Start with one day and make it your day. Just know, simply taking an anti-depressant as a means to cope is not the answer. It is my belief that if the anti-depressant was working, you wouldn’t need to take it long-term. Depression is not a life-long sentence. You can get help and relief working with the right practitioner. You can find your peace of mind. Understanding the body’s physiology and inter-connectedness is key to restore your body’s balance.

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A Suicide Note

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suicide note

Someone I know tried to kill herself this morning. Thankfully, she hasn’t succeeded, yet, but we are not out of the woods. Her suffering, like so many of the women I work with is immense. She lost her daughter to a medication adverse event, a medication that was common and promoted as entirely safe, even necessary. It isn’t.

The pain of losing a child is unimaginable, but when it is compounded by the institutionalized medical malfeasance that plagues women’s healthcare, and more and more, general medicine, the loss is unbearable. How does one continue on knowing that the medication that killed your child is prescribed to millions of others, causing ‘rare’ adverse events, some of them deadly, many of them serious and chronic, in tens of thousands of young girls and women annually? How does one continue on knowing that other families will suffer just as immensely as you and yours are suffering now? How does one continue on knowing that your child’s death was entirely preventable?

As a mom, I do not know the answers to these questions. As a mom, to begin to contemplate the death of one of my children by any means puts a pit in my stomach so deep I want to vomit; but to contemplate a death by medication reaction, especially one that is so frequently forced upon women with such callous disregard for its effects, that must be a special kind of hell.

Few, except those who experience these events understand this hell. There are no support groups for these families. There is little cultural or national understanding of these deaths. There is very little recognition that these deaths occur, they are ‘rare’ after all, let alone that they are connected to a certain pharmaceutical. Indeed, if your family member is unfortunate enough to die from certain classes of medications or vaccines, those that are particularly entrenched in medical ideology, it is more likely that the product manufacturers, the physicians, and everyone involved, will attack the credibility of such an assertion and the person making it, than take any responsibility whatsoever – a more sinister version of the all-in-your-head gaslighting that modern medicine is so fond of evoking.

Who among us would survive such tragedy?

My friend has. Despite the hell of losing her daughter, she swore to not let her daughter’s death be in vain. Over the years, I have no doubt that her efforts have saved many lives. She is a force to be reckoned with, corralling researchers, advocates, families and survivors, all focused on bringing attention and much needed research to the dangers of this class of medications. What she has accomplished is nothing short of remarkable and we are just beginning. Five years from now there will be a sea change, a paradigm shift; one that she brought to bear. Only, I know she doesn’t see it this way. She doesn’t see how integral she is to these efforts. She doesn’t see how deeply her spirit affects those of us fortunate enough to be around her. She doesn’t recognize her strength. She is weary. And for that reason I am worried.

If you read this my friend, please let us help you.

Postscript: It gives us great sadness to report that our friend is no longer with us. We were too late. Our hearts go out to her family and everyone that was touched by the kindness of her spirit.  

You will be missed my friend. 

Image by 1857643 from Pixabay.

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Triptans ± SSRIs ± Migraines ± Depression: Flip a Coin!

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Angela Stanton, PhD

Migraines and depression are understood to be neurological diseases though many consider them to be mental illnesses [1, 2]. Recent research sheds light on both conditions and shows us how much they have in common. Both migraines and depression can be stopped by voltage applied to the brain. In the case of depression, voltage has only been applied via open-brain surgical procedures as deep brain stimulation of the specific brain region, shown in the scanner as dark region [3-6]. For migraines the stimulation has been tried both outside of the brain [7, 8] and internally via deep brain electrical stimulation [9]. The cause inn both migraine and depression is seen in scanners [1, 10] as cortically depressed areas. These are dormant regions that have no observable electrical activity. When electrical stimulation is applied to a dormant brain region, it regains its function. Crucially for migraines, it has been demonstrated that a dormant area be shocked by a wave of electricity generated by the brain itself, called cortical spreading depression, energizing the dormant area to be able to create action potential again [11-14]. This is quite similar to a cardiac arrest patient receiving an electrical shock to the heart which restarts electrical activity. The difference is that in the case of the heart the electricity is applied externally by others, whereas in the case of the brain the electric shock is applied by the brain itself by using its functioning brain regions to energize nonperforming regions. Because neurons communicate to each other via neurotransmitters and are connected to each other, neurons that do not manufacture neurotransmitters and do not participate in communication exchange cannot hide. The healthy, energized regions send a wave of energy within the brain. However, this wave reaches the meninges where all pain sensory neurons are located [14] and hence migraine pain.

Similarly to how a cardiac arrest does not always get the heart to continue beating again, the electric shock of the spreading cortical depression may not awaken the dormant regions either. Energy for proper functioning of either the heart or the brain – or indeed for any living tissue – cannot be created from nothing. To continue to generate voltage after the initial shock, the proper minerals have to be available. One can only drive a car on fumes for so long. Interestingly we understand this very well when it comes to our cars but we tend to forget it when it comes to our body. Our body uses energy it receives from what we eat and drink. The energy is carried to the cells by electrolytes. Electrolytes are water mixed with vital nutrients. Electrolytes take up 55%-70% of our body per gender and age with salt about 9 grams per liter. Those brain regions that lack important nutrients will not function.

We now understand that brain regions that are starved of energy and that are not able to generate action potential cause abnormal synaptic transmissions [15, 16]. Yet rather than replenishing the brain by restocking it with nutrients, the current favorite treatment method is some form of serotonin medicine, such as triptans for aborting an ongoing migraine, or serotonin reuptake inhibitors (SSRIs or SNRIs) for prevention for both migraines and depression. Many unlucky migraineurs and depression patients also receive a voltage dependent calcium channel blocker, one of which I discussed in my last article. Given that these medications are so often prescribed, one would think that they actually work. But do they?

They actually don’t work for depression over 70% of the time. And for migraines? Well, that is another story as I am about to discuss.  It is also important to note that where energy is needed, medicines that block energization via electrolytes actually work against recovery and dull the brain, using symptom management instead.

Why Triptans and SSRIs/SNRIs are Hit or Miss for Migraines

Serotonin for migraines only works sometimes and even then with tremendous side effects, often causing depression (see adverse reaction tables below), violence, and fatalities. Based on my migraine group where thousands of migraineurs have passed through over the years, the statistics show that 80% of those who join the group take some serotonin preventive, usually an SSRI or SNRI but they still need to take abortives, such as triptans, and yet they still have migraines! Not only does this show that serotonin does not work but also that there is a very dangerous practice of “more is better,” which may be followed by fatal consequences, such as serotonin syndrome. The dangerous practice is common because of five critical reasons:

  1. Doctors should know better than to prescribe multiple serotonin medications to the same patient and if they don’t know what their patients take, they owe the courtesy to ask before they prescribe!
  2. Pharmacies have records of all medicines a patient takes. If a doctor makes a mistake, it is the responsibility of the pharmacist to catch the mistake and warn the doctor and the patient. This has never happened in the entire history of my migraine group! I usually analyze their medicines and point out the pharmacological interactions and duplication that they print out and hand to their doctors. Only after the patient’s intervention will doctors initiate removal of dangerous medicines. Last time I checked: The patients are not responsible for the medicines they are being prescribed.
  3. 85% of the doctors do not recognize serotonin syndrome. The sad truth is that while 100% of the doctors can prescribe SSRIs and similar medications with a few scribbles, 85% of them do not recognize if it reaches toxic levels in their patients. I estimate that the majority of doctors are not familiar with the mechanisms of the medicines they prescribe; they cannot tell if one is a voltage dependent calcium channel blocker or a voltage dependent sodium channel blocker or both or neither.
  4. This is the saddest of them all: financial incentives actually cause many doctors to be angry with patients who wish to reduce their medicines. Many members in my migraine group faced rude and angry doctors who placed them on such quick reduction from these highly “discontinuations syndrome” (politically correct for addictive) medicines that they were forced back on the medicines and of course that increased again the lunches and dinners or straight cash flow of the prescribing doctors—search out your doctor’s name and see what she/he has been earning on your medicines in 2014!
  5. The side effects of many of these serotonin medicines are worse than the initial problem they are prescribed for; reduction is slow and painful. While the adverse effects hit all at once when starting a medicine, the very same adverse effects return in slow motion as the patients reduce. For example, they may not even realize that they had increased blood pressure, nausea, dizziness, and diarrhea all at once for a few days or weeks while starting the medication since these adverse effects showed up at once. But in reversing and stopping the medicine, each of these effects can last for weeks and is highly pronounced, frightening the patient. Furthermore, adverse effects are updated on the go by the FDA. Most users are not informed about these by their prescribing physicians.

I randomly picked two very common medications I see prescribed all the time. Zoloft, used for depression, is a selective serotonin reuptake inhibitor (SSRI), and Elavil, a tricyclic antidepressant (TCA), prescribed for migraines frequently. The list of side effects for Zoloft (Sertraline) is huge (Wikipedia). I must say that if I were not depressed before taking this medicine, I most certainly would be after reading this list:

Adverse effects: Fatigue, Insomnia, Somnolence (sleepiness), Nausea, Dry mouth, Diarrhea, Headache, Ejaculation disorder, Dizziness, Agitation, Anorexia, Constipation, Dyspepsia (indigestion), Decreased libido, Sweating, Tremor, Vomiting, Impaired concentration, Nervousness, Paroniria (i.e., depraved or morbid dreaming/nightmares), Yawning, Palpitations, Increased sweating, Hot flushes, Weight decrease, Weight increase, Myoclonus, Hypertonia, Bruxism (teeth grinding), Hypoesthesia, Menstrual irregularities, Sexual dysfunction, Rash, Vision abnormal, Asthenia, Chest pain, Paranesthesia, Tinnitus (hearing ringing in the ears), Hypertension (high blood pressure), Hyperkinesia, Bronchospasm, Esophagitis (swollen esophagus), Dysphagia, Hemorrhoids, Periorbital Edema, Purpura, Cold Sweat, Dry skin, Nocturia, Urinary Retention, Polyuria (excessive urination), Vaginal Hemorrhage, Malaise, Chills, Pyrexia (fever), Thirst, Pollakiuria, Micturition disorder, Salivary Hypersecretion, Tongue Disorder, Osteoarthritis, Muscular Weakness, Back Pain, Muscle Twitching, Eructation (belching), Dyspnea (air hunger), Epistaxis (nose bleed), Edema peripheral, Periorbital edema, Syncope, Postural dizziness, Tachycardia (high heart rate), Urticaria (hives), Migraine, Abnormal bleeding (esp. in the GI tract), Muscle cramps, Arthralgia, Depressive symptoms, Euphoria, Hallucination, Alopecia (hair loss), Urinary Retention (being unable to pass urine), Pruritus, Amnesia memory loss., Urinary incontinence, Eye pain, Asymptomatic elevations in serum transaminases, Abnormal semen, Melena (black feces due to a bleed in the stomach), Coffee ground vomiting, Hematochezia, Stomatitis (swollen mouth), Tongue ulceration, Tooth Disorder, Glossitis (soreness/swelling of the tongue), Mouth Ulceration, Laryngospasm, Hyperventilation (breathing more often than required to keep one’s blood sufficiently oxygenated), Hypoventilation (breathing less often than required to keep one’s blood sufficiently oxygenated), Stridor, Dysphonia (voice disorder), Upper Respiratory Tract Infection, Rhinitis (irritation/inflammation inside the nose), Hiccups, Apathy, Thinking Abnormal, Allergic reaction, Allergy, Anaphylactoid reaction, Face edema, Priapism, Atrial arrhythmia, AV block, Coma, Peripheral Ischemia, Injury, Vasodilation Procedure, Lymphadenopathy, Involuntary muscle contractions, Galactorrhea (lactation that is unrelated to pregnancy or breastfeeding), Gynecomastia (swelling of breast tissue in men), Hyperprolactinemia (high blood prolactin levels), Hypothyroidism (underactive thyroid gland), Syndrome of inappropriate secretion of antidiuretic hormone (SIADH), Pancreatitis (swollen pancreas), Altered platelet function, Hematuria (blood in the urine), Leukopenia (low white blood cell count), Thrombocytopenia (low blood platelet count), Increased coagulation times, Abnormal clinical laboratory results, Hyponatremia (low blood sodium), Conversion Disorder, Drug Dependence, Paranoia, Myocardial Infarction (heart attack), Bradycardia, Cardiac Disorder, Suicidal Ideation/behavior, Sleep Walking, Premature Ejaculation, Hyperglycemia (high blood sugar), Hypoglycemia (low blood sugar), Hypercholesterolemia (high blood cholesterol), Vasculitis, Aggressive reaction, Psychosis (hallucinations and delusions), Mania (a dangerously elated mood), Menorrhagia (an abnormally excessive amount of menstrual bleeding), Atrophic Vulvovaginitis, Balanoposthitis, Genital Discharge, Angioedema, Photosensitivity skin reaction, Enuresis, Visual field defect, Abnormal liver function, Dermatitis, Dermatitis Bullous, Rash Follicular, Glaucoma, Lacrimal Disorder, Scotoma, Diplopia, Photophobia, Hyphemia, Mydriasis, Hair Texture Abnormal, Neoplasm, Diverticulitis, Choreoathetosis, Dyskinesia, Hyperesthesia, Sensory Disturbance, Gastroenteritis, Otitis Media, Skin Odour Abnormal, QTc prolongation, Anaphylactoid Reaction, Allergic Reaction, Allergy, Neuroleptic malignant syndrome. A potentially fatal reaction that most often occurs as a result of the use of antipsychotic drugs. It is characterized by fever, muscle rigidity, rhabdomyolysis (muscle breakdown), profuse sweating, tachycardia, tachypnoea (rapid breathing), agitation, Stevens-Johnson syndrome a potentially fatal skin reaction, Toxic epidermal necrolysis another potentially fatal skin reaction, Torsades de pointes a potentially fatal change in the heart’s rhythm., Cerebrovascular spasm, Serotonin syndrome similar to neuroleptic malignant syndrome but develops more rapidly (over a period of hours instead of days/weeks for neuroleptic malignant syndrome), Bone fracture, Movement disorders, Diabetes mellitus, Dyspnea, Jaundice yellowing of the skin, mucous membranes and eyes due to an impaired ability of the liver to clear the haem breakdown by product, bilirubin, Hepatitis, Liver failure. This medicine can cause serotonin syndrome on its own.

For migraine I picked Elavil (Amitriptyline) which is a TCA. While it has fewer side effects (Wikipedia) than Sertraline (SSRI), one of its major side effects is headache. Why would a competent doctor prescribe a known headache causer to a migraineur?

Here are some of the other adverse effects: dizziness, headache, weight gain, delirium, confusion, anxiety, agitation, orthostatic hypotension (low blood pressure), sinus tachycardia, loss of libido, impotence, sleep disturbances such as drowsiness and insomnia. Most importantly, Amitriptyline inhibits sodium channels, L-type calcium channels, and voltage-gated potassium channels, and therefore acts as a sodium, calcium, and potassium channel blocker as well.

Recall my argument of a car only able to go on fumes for so long? This drug, by blocking all possible energizing channels, blocks the inflow of nutrients and the outflow of toxins. This car is not going anywhere!

Yet many migraineurs who join my group have been taking Elavil, which of course doesn’t work, so then they end up having to take several other medicines to replace activities the brain cannot do: they often receive prescriptions for other types of SSRIs, sometimes voltage dependent calcium blockers, barbiturates, NSADs, muscle relaxers, steroids and even triptans to come full circle, and add the very ingredient they blocked from being released the first place!

Does Serotonin Use Make Any Sense At All?

When a brain region is not able to generate action potential, as shown, lack of serotonin is not the cause. It is entirely possible that the particular neurons that cannot generate enough energy happen to be responsible for serotonin production, in which case adding serotonin will indeed take the pain away. However, it will not treat the underlying cause of not having enough energy for generating action potential. The fact that it is energy shortage rather than serotonin shortage that causes depression is clearly demonstrated by the deep brain stimulation experiments on live humans, where the voltage stimulation lifted their depression right there during the experiment without any serotonin. The patients were able to explain what they felt and how their depression lifted during the procedure [4-6, 17]. It all sounds very simple actually since we know what generates action potential in the brain: salt.

So why do migraine and depression sufferers keep on getting serotonin medications knowing that serotonin has absolutely nothing to do with migraines? This is a great question that I would like to ask many physicians! Habits are hard to break but eventually they must!

Concluding Thoughts

There is only a small chance that triptans or SSRIs will work for your migraines or depression but it is 100%  certain that adverse effects will prevent your brain from working properly. In the long run, these drugs cause permanent damage. Do yourself a favor and learn what migraines are and how to prevent them. Since migraines and depression have the same cause as seen in the scanners, why not try the same solution? Many who joined my migraine group with depression and migraine are now free of both, as well as all their medicines! Join the movement for healthy life without medicines.

Sources

  1. Gasparini, C.F., H.G. Sutherland, and L.R. Griffiths, Studies on the Pathophysiology and Genetic Basis of Migraine. Current Genomics, 2013. 14(5): p. 300-315.
  2. Young, W.B., et al., The Stigma of Migraine. PLoS ONE, 2013. 8(1): p. e54074.
  3. Holtzheimer, P.E., et al., Subcallosal Cingulate Deep Brain Stimulation for Treatment-Resistant Unipolar and Bipolar Depression. Jama Psychiatry, 2012: p. 150-158.
  4. Lozano, A.M., et al., A multicenter pilot study of subcallosal cingulate area deep brain stimulation for treatment-resistant depression. J Neurosurg, 2012: p. 315-322.
  5. Mayberg, H.S., et al., Deep brain stimulation for treatment-resistant depression, in Neuron. 2005. p. 651-60.
  6. Taghva, A.S., D.A. Malone, and A.R. Rezai, Deep brain stimulation for treatment-resistant depression. World Neurosurg., 2013: p. 826-831.
  7. Aurora, S.K., et al., Transcranial magnetic stimulation confirms hyperexcitability of occipital cortex in migraine, in Neurology. 1998. p. 1111-4.
  8. DaSilva, A.F., et al., tDCS-Induced Analgesia and Electrical Fields in Pain-Related Neural Networks in Chronic Migraine. Headache: The Journal of Head and Face Pain, 2012. 52(8): p. 1283-1295.
  9. Tepper, S.J., et al., Acute Treatment of Intractable Migraine With Sphenopalatine Ganglion Electrical Stimulation. Headache: The Journal of Head and Face Pain, 2009. 49(7): p. 983-989.
  10. Hadjikhani, N., et al., Mechanisms of migraine aura revealed by functional MRI in human visual cortex. Proceedings of the National Academy of Sciences, 2001. 98(8): p. 4687-4692.
  11. Charles, A.C. and S.M. Baca, Cortical spreading depression and migraine. Nat Rev Neurol, 2013: p. 637-44.
  12. James, M.F., et al., Cortical spreading depression and migraine: new insights from imaging? TRENDS In Neuroscience, 2001: p. 226-271.
  13. Lauritzen, et al., Clinical relevance of cortical spreading depression in neurological disorders: migraine, malignant stroke, subarachnoid and intracranial hemorrhage, and traumatic brain injury, in J Cereb Blood Flow Metab. 2011. p. 17-35.
  14. Bolay, H., et al., Intrinsic brain activity triggers trigeminal meningeal afferents in a migraine model. Nat Med, 2002. 8(2): p. 136-142.
  15. Pietrobon, D., Insights into migraine mechanisms and Ca(V)2.1 calcium channel function from mouse models of familial hemiplegic migraine. The Journal of Physiology, 2010. 588(Pt 11): p. 1871-1878.
  16. Vecchia, D., et al., Abnormal cortical synaptic transmission in CaV2.1 knockin mice with the S218L missense mutation which causes a severe familial hemiplegic migraine syndrome in humans. Front. Cell. Neurosci., 2015: p. epub ahead of print.
  17. Lozano, M. and N. Lipsman, Probing and regulating dysfunctional circuits using deep brain stimulation, in Neuron. 2013. p. 406-24.

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Beyond Depression: Understanding Perinatal Mental Health

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Chandler Marrs

In part one of this series I noted that my approach to postpartum depression research was a little bit different than most others. Namely, I didn’t ascribe to either the nomenclature of the syndromes, whether defined by popular culture or by the DSM, the timing of the onset of the symptoms nor the explanation of the causes. I think the symptoms are largely hormone related, and as such, ought to be distinct entities diagnostically. That requires understanding, testing and then defining the spectrum of symptoms and their relationships with individual and hormone patterns. I’d like to discuss symptoms first, even though this particular research was conducted after finding hormone – symptom relationships and informed by the patient stories collected in conjunction with that research.

Postpartum Depression or Not?

Not, but with a caveat.

As I accumulated data for my hormone symptom study, those data along with participant stories led me to design a broad-based symptom study for postpartum women (this particular study did not include pregnant women, as some my other studies did). I wanted to test whether the typical designations of postpartum depression clustered statistically within discrete but consistent diagnostic categories. Did postpartum depression exist and if so, did the symptoms mirror those in the DSM or in the popular science? Or was depression just one among many types of symptoms that emerged and how would those symptoms fall together statistically? In other words, I wanted to test what the women were telling me about their experiences and against what my other data were showing. The study:

Dimensions of Postpartum Psychiatric Distress: Preliminary Evidence for Broadening Clinical Scope

Study Basics.  The study was online with questions covering nine dimensions of postpartum mental health that I had found relevant in previous work: depression, anxiety, mania, psychosis, obsessive-compulsive behavior, self-image, social support, mental status and perceptions of motherhood. The questions were retrospective and the participants were asked to rate the frequency of symptoms experienced over the first 30 days following childbirth on the following scale: 1-never, 2-occassionally, 3-frequently, 4-most of the time.  We had 215 women complete the survey. From those data we did an exploratory factor analysis (EFA) to see how the symptom data grouped itself statistically. Did the symptoms group by established psychiatric dimension e.g. depressive symptoms in a depression category, anxiety symptoms with the anxiety category, psychosis with psychosis, etc.? Or would the symptoms group in some other manner?

Results.  As I expected, the standard categories were not statistically grouped. That is, there was no such thing as postpartum depression or postpartum anxiety or postpartum psychosis. Rather, there were unique clusters of symptoms that grouped together and contained aspects each traditional symptom category. The EFA data revealed 10 new and distinct factors or symptom groups. Most telling were the first three factors or groupings: mental status, psychoticism/morbid thoughts and a general anxiety. Notice, I didn’t find a depression grouping. Indeed, depressive symptoms were interspersed throughout the 10 categories, but most densely and the most severe within the psychoticism group. Let me explain. Here are the 10 symptom groups or factors, listed in order of importance or prominence (variance accounted for):

  • Mental status – This was the most prominent cluster of symptoms, with upwards of 40% of the women reporting difficulty with two primary areas of mental status: memory and attention, and motivation – or lack of motivation.  Some of the symptoms ascribed to within this group included: difficulty completing simple tasks and staying focused, mind going blank, difficulty organizing thoughts, losing track of time, no motivation, difficulty expressing thoughts, fatigue and loneliness among others. From other research conducted, we know that measurable cognitive difficulties, especially those associated with attention and memory, are common problems amongst pregnant and postpartum women. That this was the highest ranked factor, meaning that it accounted for the most variance, was consistent with my previous work.
  • Psychoticism and morbid thoughts – This was the most striking category and accounted for what many would consider the most troubling symptoms. This factor grouping included everything from intrusive and morbid thoughts, to hallucinations and suicidality.  It truly represented what would have been the most serious of psychiatric conditions but was not akin either to a strictly depressed state or psychosis in the most traditional sense or even to an obsessive compulsive disorder, emphasis on obsessive. Rather it had components of each, uniquely focused on the maternal state. Some of the symptoms ascribed too included: images of the baby being stabbed or thrown out of a window, fear of harming the infant, thoughts of violence, hearing voices to harm myself or others, inability to keep bad thoughts out head, afraid to be alone with baby, afraid of harming self, frightening dreams, the feeling that others want to harm me (the mother) or the baby, feelings of terror, no hope for the future, feel like someone is controlling one’s thoughts, worrying that the infant will suffocate.
  • General Anxiety – this grouping of symptoms is what I believe may represent milder forms of distress that to some degree all women feel as they enter into motherhood. Some of the symptoms include: ‘I believe others see me as a bad mother’,’ I think I am a bad mother’, confusion, no confidence, overwhelmed, mind racing, losing control, constantly being judged, no one understands me, among others.

The remaining seven factors or groupings were somewhat more specific to traditional psychiatric categories but also included psychosocial aspects relative to self-image, relationship and social support. They also accounted for far less statistical variance, indicating some degree of specificity to certain groups of women rather than being applicable to most postpartum women and/or were far less relevant to the overall distress. These groups included:

  • Panic – fear of large crowds, fear of leaving the house, feeling keyed up, restless, on edge, skin crawling
  • Guilt and emotionality  – a range of guilt related feelings, but also, mood lability – switching from happy to sad, quickly and frequently
  • Compulsive behaviors  – cleaning and checking
  • Hyper-vigilance  – a sense that the new mom was the only one who could care for the child
  • Contentment  – positive relationship, social support, and general well being
  • Negative self-image – range of negative self-image attributes, along with a sense that her body was shutting down –that something was wrong with her.
  • Mania – hyper excitable, excessive energy despite a lack of sleep, impulsive behavior

What Does This Mean?

The results from this study suggest that neither the current diagnostic categories nor the popular nomenclature appropriately categorize the types and severity of postpartum related mental health issues. Depressive symptoms were neither the most common symptoms nor contained within a defined category. Rather depressive symptoms were interspersed throughout each category with the most severe depression symptoms, loss of hope and suicidality loading to the psychosis/morbid thoughts category. Along with the more severe depression symptoms, this category contained hallmark psychosis symptoms like hearing voices, seeing things, but also what could only be described as violent, frightening intrusive thoughts.

What was particularly interesting is that mania, which has long been linked to postpartum psychosis, was neither present in the psychosis/morbid thoughts category nor accounted for much variance at all within this study. This could mean that mania is not a common component of the most serious forms postpartum distress for most women, but rather a distinct subset of the disorder. Instead, it may be the violent intrusive thoughts and the hallucinations that are associated with the most serious symptoms of depression – the suicidality. From these data, the postpartum spectrum is not from mild sadness (baby blues) to more intense sadness or postpartum depression to psychosis but rather based on the degree and severity of intrusive thoughts and hallucinations – the degree of psychotic symptoms may very well determine and drive the ‘depression.’ Additional research will tell if this is the case.

Addendum

Phase II of this study, a follow up confirmatory factor analysis was begun, some data collected (n=100), but not completed. When the economy tanked in 2008-9, I, and many other adjunct faculty were let go. I hope to resume this research soon through Hormones Matter.

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I Wanted to Die Last Night: Endometriosis and Suicide

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Rachel Cohen

I wanted to die last night. There, I said it. Ugly thing to say, right? Might even make you want to inch just slightly away from me. Feel free to. Sometimes I want to inch away from myself as well. But before you judge, try to listen to what I have to say. Assess my words with an open, empathetic heart, and think about the way you would feel if you were in my shoes. It may sound as though I am trying to pull at your heartstrings, to make you feel depressed for me and my life, but I am not.  I just want you to understand what it’s like to be a woman who suffers from endometriosis. I just want you to understand. These are the realities of living with endometriosis.

Dealing With the Physical Reality of Endometriosis

Pain. Imagine your abdomen and pelvis are encased in barbed wire so that the spikes of the wire are actually piercing them, stabbing them sharply every time you move. Now imagine that the barbed wire is actually attached to some sort of electrical current that shoots electricity through the spikes, increasing the intensity of each penetration. Next, add a machine that alternates shooting the electrical spikes into the body and pulling them out again in random intervals, thus adding a surprise and shock factor to the pain. Lastly, in addition to the shocking electrical stabbing pain, there are deep, underlying waves of pain that crush and release the muscles, causing a cramp so excruciating it takes your breath away. Imagine living with that agony on an everyday basis.

I live with a veil of pain draped over my body. Not stubbed toe pain, sprained ankle pain, or even broken heart pain. The pain that I feel every day is an all-encompassing event, specially formulated to break both my body and my spirit. It is a visceral and animalistic torture that brings me to my knees in surrender. That is the reality of living with endometriosis.

Fatigue. I want you to try to recall a night during which you slept very little. Maybe you had a party the night before, or perhaps you were up doing work. Now think about the way both your body and mind felt the following day. Did you function as well as usual? Were your movements as fluid, your mind as sharp? Or did it feel as though you were moving through quicksand, your brain wrapped in cellophane? How would you deal if you felt like that every day?

I live with a crushing form of fatigue that makes my every move devastatingly cumbersome. I often feel as though I am nine months pregnant with quadruplets, constantly carrying around an enormous weight that is attached to my body, sucking whatever strength I have left.  My limbs feel like they are wrapped in lead, and my eyelids covered in cement. All my body wants to do is sleep, every minute of every day, but it can’t. My life doesn’t take a nap when I do.

The Emotional Reality of Endometriosis: Depression

I wish I could say the physical aspects of endometriosis are all that plague me. Unfortunately, this is not the case. You see, for every physical malady that plagues women with endometriosis, there is an emotional component that is equally, if not more, devastating.

Guilt. Guilt is like an itchy woolen sweater that is two sizes too small: suffocating, uncomfortable, and in desperate need of being shed. It permeates the many aspects of my life and makes me miserable. I feel guilty for having endometriosis to begin with, as I sometimes wonder what I did wrong to deserve it. I also feel guilty that I cannot give my husband the emotional or physical attention he needs. I feel guilty that my close friends and family have to spend their days taking care of me when I am incapacitated and that I spend my days idling around the house while they work hard. I feel guilty for canceling plans that I made weeks ago and the lack of ability to make plans to begin with.  Guilty that I cannot be a good friend to others. And guilty when I think of my children who I cannot take care of the way they deserve to be taken care of. Finally, I feel guilty that I cannot give my husband any more precious children due to the hysterectomy I had that was not even successful.

Inadequacy. Due to the symptoms of endometriosis, I often feel inadequate and obsolete. I feel like I lack the ability to do anything important, like my job, or household work.  Relationships with my spouse, kids, parents, siblings and even my friends are often placed on the back burner as I struggle daily to merely exist. This inability to maintain relationships, keep my job, take care of myself or family members or even be intimate with my spouse overwhelms me with the feeling that I am incompetent, useless, and valueless. Sometimes I even feel as though my existence on this earth is pointless if I can’t be a functioning member of society. These feelings of incompetence sometimes also lead to depression, embarrassment, guilt, and rage.

Anger. Imagine being told that the agonizing pain you feel every second of every day is not real, that you are making a big deal out of nothing. How would you feel?  Anger? Rage? Imagine being told that you are a “druggie” when you ask your doctor for pain medication to ease the misery you are dealing with. Anger again? Or how would you feel towards “God” or “The Universe” if you let your mind wander to the opportunities you would have if you didn’t have endometriosis? It’s hard not to be furious when you think of everything you are missing or losing due to this disease. What if you’ve tried for years to get pregnant with no success or just miscarried the child you’ve wanted all of your life. And imagine being so debilitated by your symptoms that you are unable to perform your everyday activities. How would you feel? Frustrated? Angry? That’s exactly the way I feel.

Jealousy. For me, jealousy rears its ugly head when I see other people performing activities that I am too sick or fatigued to perform. It is hard not to be jealous of a healthy person when I am stuck in bed, too exhausted to move, or lying on the couch, writhing in pain. Just seeing someone go food shopping without discomfort causes jealousy within me, as I would do anything to be able to perform everyday activities without pain. Jealousy is also inevitable when we I see other women, basking in their pregnant glow, and I know that I will never again carry a living being inside of me.

Loneliness. Yes, I am extraordinarily lucky to have a wonderful support system in my life, and I am enormously thankful for that support, but there is a profound, hollow loneliness that sometimes overwhelms me when it occurs to me that despite their best efforts, my loved ones cannot fully understand what I am going through. Even my sisters with endometriosis cannot completely comprehend my individual suffering, as every person suffers uniquely. Therefore, I am sometimes led to feel as though no one understands me, and there is no thought lonelier than that.

Loss. Endometriosis is a disease that is full of loss and mourning. On a basic level, I mourn the loss of a “normal”, illness-free life. A life that is chock-full of boring, everyday activities and errands. I am no stranger to mourning or to loss. Having a miscarriage created a deep, inconsolable hole within me that will remain with me forever.  But most of all, having a hysterectomy has caused a ubiquitous feeling of loss within me as I mourn, not only the loss of potential children, but the loss of a part of my womanhood.

Depression. Oh, depression. That dark, suffocating feeling when the world looks like it has no color in it and our futures seem murky and unclear. For me, depression is caused by many different things. Being alone all the time, not being able to spend time with family and friends due to pain, fatigue or other symptoms is depressing. Excruciating pain is depressing. Feeling like my illness is misunderstood is depressing. Feeling like I need to be embarrassed of my illness is depressing.  And lastly, the thought that there might not be any hope for my recovery because there is no tangible hope for a cure, that I might have to deal with the incapacitating symptoms of endometriosis for the rest of my life, is the most depressing thought of all. That is why I wanted to end my life. Yes, I contemplated suicide. Like so many of my sisters with endometriosis, I hit bottom. I was tired of the pain, tired of the despair, tired of the guilt, and tired of being tired. But mostly, I was and am, just tired of the pain.

Living with Endometriosis is Horrendous

Now that I have exposed my vulnerable and aching heart to you, my friend, you have a choice to make. I will never blame you if you choose to stay away from my complicated and sometimes depressing life. Like I said, if I had the choice, I would probably do the same. But let me say one last thing before you make your decision. Life with endometriosis is horrendous, but women with endometriosis are not. We are strong, determined women who fight fiercely and love fiercely. We try our best. We are not lazy or pathetic and we don’t give up. We may not sugarcoat the painful emotions and terrifying symptoms that we deal with. Our honesty may even frighten you. But when you meet a woman with endometriosis, you are meeting a proud, indomitable warrior. A soldier who goes into the fire on a daily basis and emerges with a thicker skin time and time again. A woman who should not be pitied for her pain, but admired for her ever-present resilience and strength. That, my friend, is who I am. Take me or leave me. It’s up to you.

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