Monday, 4 April 2011

Progesterone intolerance spotlight: depression

• affects 1 in 5 women
• likely if you get bad PMS
• damaging & avoidable
Effects include depression, weeping fits, irritability, aggression, paranoia, guilt, panic attacks, loss of enjoyment, loss of inhibition, self-loathing
Progestogens are in...
• the contraceptive pill
• the contraceptive injection
• the contraceptive implant
• the Mirena coil
• some HRT
It's a key treatment for endometriosis.

This series of posts highlights the effects of progesterone intolerance, from my personal experience. They are not medical advice.
Medical professionals: it's important to understand the severity of progesterone intolerance and the damage it can do.
If you think you are progesterone intolerant: avoid taking progestogens if possible and find a sympathetic doctor. If your doctor dismisses your symptoms, change doctor.
sorrow   hopelessness   total perspective vortex
When someone close to you dies, or when someone you love deeply breaks your heart, the sorrow comes wherever you turn. You open your eyelids to your loss in the morning. It's waiting in the mirror when you raise your face from the basin. You open your wardrobe and it stops you dead, staring into the folds of clothes, numb with sadness. You lift your tea and tears clog in your throat, stopping you drinking. You rest your fork, you put down your pen, you turn to cross a road, and another wave of grief and loss floods you.

The sorrow of depression is the same.  Waves of sorrow, grief, and loss hiding in all the folds of your day.  But sorrow about what?  Like the anxiety of paranoia, it finds something to attach itself to - and in my experience, with more success than the anxiety. Few human hearts have no secret griefs. And grief is proportional only to itself.

If you already get severe PMT (and that's likely, because it correlates with progesterone intolerance), you're probably experienced at separating out the actual issue and the massive sorrow.  I use PMT as an emotional audit: okay, those things are clearly the issues, so I shall deal with them - after the PMT has gone. Jot it in my diary for three days' time, emotional to-do list. But what if the feeling doesn't go for three weeks? Two months? Years?  And you know that it's not going to get better. Ever.

Alongside the sorrow, comes a feeling that the lights have been switched off in your life. Your job - an empty pursuit, an endless repetition on the way to retirement and death. Your relationship - loveless, an enactment of norms. Your finances - desperate, because what you have now is not enough and there will never be more. This day - hollow and scraped clean of meaning, only a list of things you need to do, or that you're supposed to "need" to do; you can see from this moment, walking alongside iron railings, to the moment you get home, and the kettle put on, and tea made, and then you will drink the tea, and then you will have finished the tea, and then you will do something else. Make supper, perhaps. So you will make the supper, and then eat the supper, ash in your mouth, and then you will have eaten the supper. Perhaps you will watch something on TV. It will make no difference to your life, but you will watch it, and then you will have watched it, and then you will go to bed. Perhaps you will go out for a drink; the putting on of the make-up, the buying of the drinks, the drinking of the drinks, the drinks are now drunk, and you go all the way back home and take the make-up back off and you are where you started, and nothing has changed.  And nothing will change; nothing will ever get better.  Your heart will never hurt less than it does now.  Your dreams will stay the dead seaweed they are today; no waves will wash in to bring them back to life.  Your every hope for the future, for the home or the love or the job or the book, is cut dead.  The lights won't come back on.  And what's more, this isn't some depressive mood, some momentary gloom: this is the absolute truth about life.

Total perspective vortex
 2 “Meaningless! Meaningless!”
   says the Teacher.
“Utterly meaningless!
   Everything is meaningless.”
  3 What do people gain from all their labors
   at which they toil under the sun?
4 Generations come and generations go,
   but the earth remains forever.
5 The sun rises and the sun sets,
   and hurries back to where it rises.
6 The wind blows to the south
   and turns to the north;
round and round it goes,
   ever returning on its course.
7 All streams flow into the sea,
   yet the sea is never full.
To the place the streams come from,
   there they return again.
8 All things are wearisome,
   more than one can say.
The eye never has enough of seeing,
   nor the ear its fill of hearing.
9 What has been will be again,
   what has been done will be done again;
   there is nothing new under the sun.
10 Is there anything of which one can say,
   “Look! This is something new”?
It was here already, long ago;
   it was here before our time.
Ecclesiastes 1:2-10
"For when you are put into the Vortex you are given just one momentary glimpse of the entire unimaginable infinity of creation, and somewhere in it a tiny little marker, a microscopic dot on a microscopic dot, which says 'You are here.'" - Douglas Adams, The Restaurant at the End of the Universe

Alongside depression comes this unshakeable, absolute conviction that, finally, you are seeing clearly.  The scales have fallen from your eyes.  The fundamental meaningless of everything is revealed; the total perspective vortex shows you the universe and says, "You are here."  The hollow futility of ads blasting fashion and must-haves, the pointlessness of all contemporary pursuits, the emptiness of days which fill themselves with these copied ruts - anyone who denies the truth of this is suffering wild delusions.  You are seeing the true heart of being.

I don't know if there's any way to shake that conviction, besides the experience of having been there before, and come out the other side, and watched life take back on its lifeblood of light, meaning, beauty, and purpose. Again, the seaweed: lying so blackened and dead, a wasteland, but when the tides come back, it will dance in the sparkling water among shining churning grains of sand, the magical underwater world of moving fronds and fish returns.  The dead seaweed isn't the truth of the sea or the coast.  But by God, at the time, it feels like it.

The sorrow made me want to take the knife and hold it to my wrist.  The hopelessness stripped my future of any option beyond that stark choice.  But it was the the total perspective vortex that made me press down, because I believed that what I saw was the truth of the world, that all the happiness and joy I'd ever had was just an illusion.  But actually, of the whole wonder of the sea, all I was seeing, all I was able to see, was the dead seaweed.

'Cheer up!'
Cheer up! Buck up! Pull yourself together. Get a grip! Stop feeling sorry for yourself. Have I ever told you how lucky you are?

Anyone who's suffered depression will recognise how unhelpful these sayings are. It's worth remembering that people are trying to help, mostly - but certainly with chemical depression or hormonally-induced depression, that simply doesn't work. It's like telling a person with a broken leg to go for a jog.  And it needs to be recognised as that: it is the hormones creating this state. Like the paranoia, like the sorrow, it is a hormonal, chemical reaction. It is not circumstantial depression.  Circumstantial depression may react to a change in circumstances.  Hormonal depression is being pumped in by the hormones, and all the good will and positive thinking in the world is no good while the source, the hormones, are still pumping away.   You don't try to stop a flood by imagining things dry; you find the source and stop that.

I have list upon list upon list, from the dark days, of How To Be Happy and Happy Things To Do and Things That Make Me Cheerful.  I painstakingly recorded, through crippling grief, things that I remembered used to bring me pleasure, and tried to do them, to fix myself.  I couldn't fix myself - because I wasn't broken.  My attempts only brought me fresh grief, because the things I most loved brought no happiness, and as I ticked off my lists, I crossed off one by one the things I used to love - until even writing, even reading, my two greatest joys, were as helpless to help me as the rest.  When you are trying that hard to be happy and people tell you to just be happy, how lucky you are, how you just need to pull yourself together, yes, that is difficult.  You can't.  Broken legs can't jog.  One of the posts still to come will talk about how you can help yourself cope with progesterone intolerance, in more detail, but for now, rest on this: it will pass; it is no more the truth about the world than dead seaweed is the truth about the sea; it is not your fault, your weakness, or your lack - you are strong.

Depression is an effect of progesterone intolerance. The effects of progesterone intolerance can damage lives, completely pointlessly. This affects 1 in 5 women, so please help raise awareness by sharing this post - and please feel free to share your own experiences.

Music: Hello by Evanescence

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  1. Your words are exceptional - you write like you know how I feel, how I've felt, like you're in my head. I'm so sad that this is the case, because I know it means you DO know how I feel. To remember the fear, the darkness, the desperate howling of crying so hard your heart aches more is more vivid in my mind and memories than I wish.

    You are wonderful. You are completely wonderful. x

  2. Alongside depression comes this unshakeable, absolute conviction that, finally, you are seeing clearly. The scales have fallen from your eyes.
    I don't suffer from PMT, endo or progesterone intolerence, but I've certainly been through depression and you've so put your finger on that experince. Yes. Dead Seaweed. I'm moved and saddened by your post, and I hope loads of people read it. Wonderful stuff. Thank you.

  3. I no longer deal with endometriosis in any of its stupid ugly scarring hateful ways or try this or that to make it more tolerable. It is intolerable. I'm free of endometriosis - and I am free of my uterus, my ovaries and my fallopian tubes. Keeping my cervix supposedly makes me a lucky woman. If, lacking most of my estrogen, I am still a woman.

    But like Janine, I suffer from depression and you have described something so difficult to describe that I must comment. Sometimes I am Despair. My dreams are dead seaweed and my destiny, which cannot be altered, is to be a crippled old woman living in a government subsidized bedsit with no friends. My children will not visit me because I embarrass them. I don't blame them but I still miss them. This is just the way it is, or the way it's going to be . . . at least, until I am not Despair, any more.

  4. I wish I had known this before my Dr prescribed the Mirena to stop bleeding and then, after battling with that for nearly 3 years, they put me on straight, daily high dose progesterone...

    What was a mild continuous depression grew into a year of severe depression,counseling, anti depressants - until someone finally told me that depression is a common side effect of progesterone.

    I lost myself. I lost everything and everyone that mattered. I couldn't understand where the real bouncy, silly, happy me had gone, and I couldn't see a way back.

    12 days after finally having an operation to stop the need for progesterone my head is starting to clear, I can feel myself coming back in little shy pieces; a real smile, a happy jiggle, plans for the future starting to bubble over again.

    Unfortunately the price of the past 4 years has been heart breakingly high. 4 years I can't change, 4 years I can't get back, people lost.

    Don't take progesterone.

  5. Hi Lee - thank you so much for sharing your experience of it. I really want to spread awareness of progesterone intolerance, as it affects so many women (estimated 1 in 5) and progesterone is so commonly given. Yes - that heart-breakingly high price. I had a similar experience in my life, which I talk about on the post about loss of enjoyment (anhedonia).

    It would be wonderful if you could help raise awareness by being brave enough to talk about it to people, and by telling your doctor and other healthcare people you see. The first post on prog. intolerance, Can't stand the pill? A brief introduction to progesterone intolerance, gives the core info with citations for peer-reviewed studies, so you can print that out to give to medical professionals. It might also be worth printing some of the others, though, because words like "loss of enjoyment" and "depression" can hide the true severity of what women experience. Some women are even misdiagnosed with bipolar disorder, when they're actually acutely progesterone intolerant.

    I'm glad you're off it, now, and I'm so sorry that you've had to suffer those losses. It really is heartbreaking.

    1. Your description of depression is so eloquent. I hope you are reading and writing now.
      Thank-you endo writer, because when the vortex hits I cannot think clearly enough to even recognise the cause but for your blog I might not have done despite knowing beforehand.
      I went to my doctor with a list of the awful things progesterone did to me and they kept a copy but it made no difference. When i was told i should have a mirena coil to stop the constant bleeding making me anaemic I took the list of horrible progesterone effects to the consultant, I had 3 extra appointments where i begged for a hysterectomy but no they said 'its a tiny amount, we have to try this first,etc etc.' And so I lost another 3 months of my life, wasted and i won't get them back. The coil was removed today, it will take 48 hours for the progesterone to leave my system so I will sedate myself for that time.
      I have had so many misdiagnoses over the years too (depression, bipolar etc) it is so important to share this. I will be posting your pages on mine and my husband's fb for a long time to come, even if it only helps 1 other woman.

  6. For years in my 20's & 30's I have had the most horrific periods imaginable; unbearable cramping, exhaustion 2 days before, 4 days during & 1 day after. I got married at 39 & at 43 after a few months of intense disagreement & stress of our home going to foreclosure in 2007, one day I just stopped having a period. It came early & out of cycle, was very light & I found that so strange & unexpected as my mum was pregnant with me at the age of 42! I always had to the day, to the hour regular cycles but unbelievalbe bloating & ammenhorea. I had depression when I took the pill but always felt a bit edgy & got angry easily which isn't my nature. After seeing a naturopathic female doctor, she recommended I begin the Wiley Protocol bioidentical hormones. She said if I was not in menopause I would begin to bleed soon around 90 days from taking the topical cremes according to the standard lunar cycle & that if I indeed was in menopause I would not have any bleeding. At age 46 I did start a period on the day of 90 days & it was a pretty close to normal flow so she said I was clearly not yet in menopause. I continued the bio's for about 6 months & continued having regular periods but my depression, especially on thr days of higher progesterone, was intolerable. I was so blue & flat I just could not function nor could I put myself in the public as my reactions & my teariness was uncontrollable. I cried constantly for no apparent cause. When I told her of the incessant crying & depression & that I saw it correlated with the progesterone, she said "Oh no..progesterone is so good for a woman in perimenopause or has such healthy properties & is so good for bones & cholesterol levels, etc." I said, that may be so but I cannot live or be a member of society under this type of behaviour. It is simply miserable. She then did say there are some women (though she stated it to be so very few) who cannot tolerate progesterone yet she suggested I take it anyway & use a lower dosage. I was using, honestly a 'dot' as in a pen mark of a bit. If I inadvertently used a tiny bit more, I felt the effects immediately that day & fell into a serve mood change. I have low thyroid as well & feel perhaps this is an hormone imbalance I already have that attributes this intolerance & that doctors are just not so familiar with this. Any thoughts here are so welcome.

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  8. I just want to post a follow up here, 5 years later. I have my life back. I am happy, in a great relationship and full of the beauty of life. I still have a hard time coming to grips with the damage that 4 years on progesterone did to my previous relationships and life but I am so thankful to you for posting this information and your story on the internet and I spread the word where possible and hope like mad that more women stumble across your posts and reclaim their lives. Truely, thank you x

    1. Hi Lee, Your original story seems so similar to what I am going through at the moment , except for the breakup of my relationship. Current on progesterone cream, but suffering from anxiety and depression that I want to end it all now...currently on 10 mg cream twice a day.. did have some glimpses of hope the other week but these have now gone... did you replace the progesterone with anything else ?

  9. Lee, thank you so much for that beautiful update. That is such a wonderful and touching thing to hear. I read your comments, before and after, to my partner and my friend, and all three of us were nearly in tears. I'm so glad. And yes, I know that feeling of coming to grips with the damage it did in the past, but I'm so glad your present life is beautiful again.


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