Sunday, 23 January 2011

Can't stand the pill? A brief introduction to progesterone intolerance

Depression, weeping fits, irritability, aggression, paranoia, guilt, panic attacks, loss of enjoyment, loss of inhibition, self-loathing... If the pill drives you crazy, you're not crazy: you're probably progesterone-intolerant. This isn't rare: 1 in 5 of women are progesterone intolerant.1 Nor is this "moodiness" or "negative affect". It can destroy relationships, cripple academic performance, damage careers, and turn otherwise mentally healthy women suicidal. It can be misdiagnosed as chronic depression and bipolar disorder2, leading to years of inappropriate treatment. It shouldn't be news, either: this kind of bad reaction to the pill has been known about for at least forty years.

It's incredibly common, it's well-established, and it destroys lives. And it's completely unnecessary. All you have to do is stop taking the pill, or get your Mirena coil taken out, and return to your joyful, human, recognisable self. In the inaugural post for endowriter, I said I expected it to be common - but I didn't expect it to be so common, or the information to have been available for so long, and when I found that out, I wept. Because, as I also said in the first post, I wreaked havoc on my life and nearly committed suicide; the damage that I listed above is my own experience as well as cited sources; and it was all unnecessary. So here's the basics.

progesterone and progestogens
Progesterone is natural; progestogens are artificial.  Progestogens are in the combined pill (along with oestrogen), the mini-pill (progestogen only), the Mirena coil, the hormone implant, the contraceptive injection, and some HRT. The intolerance, however, seems to be the same:
Cullberg (1972) showed that women who had previously suffered from PMS reacted badly when taking oral contraceptives. This suggests that women with PMS are more sensitive to hormonal provocation than women without.1 
In other words, if you react badly to your own progesterone, you'll react just as badly (or worse) to the artificial kind. If you get bad PMS, the pill will be worse.

PMS and progesterone-intolerance
PMS is actually a form of progesterone-intolerance. Progesterone is released in the second half of your cycle, from when you ovulate to your period. (This is the luteal phase, usually 10-13 days long. It varies from woman to woman, but is very consistent for each woman.) Contrary to popular belief, it's not caused by your approaching period - it's caused by the progesterone released after you ovulate. That's also why symptoms ease within a day or two of your period starting. The symptoms for PMS and progesterone-intolerance are the same:
This hormone can produce depression, tiredness, loss of libido, irritability, breast discomfort, and in fact all the symptoms of PMS, particularly in women with a history of PMS.4 
The symptoms are often described in articles as "negative moods" or "negative affect". As mentioned at the beginning, this doesn't begin to describe the emotional and mental hell that women go through, never mind the severe repercussions on their lives.

Symptoms of progesterone-intolerance
The symptoms of PMS (which are also the symptoms of progesterone intolerance) are described by the American Psychiatric Association as follows.5  The first four symptoms are the strongest indicators.

1. Markedly depressed mood, feelings of hopelessness, or self-deprecating thoughts
2. Marked anxiety, tension, feelings of being ‘keyed up,’ or ‘on edge’
3. Marked affective lability (e.g. feeling suddenly sad or tearful or increased sensitivity to rejection)
4. Persistent and marked anger or irritability or increased interpersonal conflicts
5. Decreased interest in usual activities (e.g. work, school, friends, hobbies)
6. Subjective sense of difficulty in concentrating
7. Lethargy, easy fatigability or marked lack of energy
8. Marked change in appetite, overeating or specific food cravings
9. Hypersomnia or insomnia
10. A subjective sense of being overwhelmed or out of control
11. Other physical symptoms, such as breast tenderness or swelling, headaches, joint or muscle pain, a sensation of bloating, weight gain. 
That's a terrifying list, but it's also a highly medicalised list. It's an accurate list of symptoms, yet it doesn't give any idea what progesterone intolerance is actually like. I believe it's useful for medical professionals to understand the severity, so that side-effects are not dismissed; I believe that it's helpful for women to read experiences that reflect their own; and I believe that my writing can explain what it's like. Over the next few posts, then, I will write about the worst symptoms in turn, from my own experience: paranoia and panic attacks; loss of enjoyment; depression and weeping fits. For now, the best I can describe the worst of it is as - bereft.

Bereft

My words aren’t spells, my virtue is no guard.
The music’s lies and hopes die at their birth.
The truth is barren; fantasies are ash.
Through hours like this, I age and trudge the earth.

I put my lips to sweetness, but it’s gone.
I put my lips to wine, but what’s the point.
I put the wine away, the kettle on
And put away the pain no hopes anoint.

I sleep so I can wake for work, I wake –
I work so I can live, and so I live.
I live, but if I feel it’s just an ache,
And even dreams have nothing more to give.

The music still has meaning, but it’s gone
To worlds where we might meet, and you might care.
And I’m too wise to say I can’t go on
While I can sleep and work, though nothing’s there.
— Megan Kerr


SOURCES
1 Panay, Nicolas and Studd, John. (1997) "Progestogen intolerance and compliance with hormone replacement therapy in menopausal women" in Human Reproduction Update, Vol. 3, No. 2 pp.159–171.
2 Studd, John (2010) (DSc, MD, FRCOG) www.studd.co.uk
3 Cullberg, J. (1972) "Mood changes and menstrual symptoms with different gestagen/estrogen combinations. A double blind comparison with placebo" in Acta Psychiatr. Scand. Suppl., 236, 1–46.
4 Studd, John (2005) "Women, hormones, and depression" in The Management of the Menopause (3rd edition) Studd, John (ed.) New York, London: The Parthenon Publishing Group. (146-161)
5 Diagnostic and Statistical Manual of Mental Disorders, 4th ed. Washington: American Psychiatric Association, 1994.

24 comments:

  1. Hi there, thanks for the interesting article.

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  2. Wow, that comment sounds like a spambot. I mean, thank you for the article. It's clear and informative and lucid and touching.

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  3. Thank you for posting this. Some years ago I was prescribed the oral contraceptive pill to reduce my severe menstrual cramps. (You need to understand that my cramps were so bad at that stage that I used to feel utterly desperate and the only thing that kept me from being suicidal was the fact that the painkiller would *eventually* work and it would go away.) Well, the pill was far worse. I spent a month in misery and irritability, and weeping. I hated life. (I also suffer from PMS, but didn't connect the two.) Because my moods were so uncharacteristically me on the pill (I'm a happy person normally!) I knew I couldn't handle it. I'd rather feel like death one day a month than all year round. And I never took the pill again. Now, reading your post, it all makes sense. Thank you for sharing this.

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  4. This is a wonderful article. I started the pill when I was 16. Since then I have diagnosed with clinical depression and ADHD. I have been on and off every antidepressant you can think of. I dropped out of college because I was suicidal. I'm 22 years old now. A few months ago I had an epiphany. Everything I was experiencing since I was 16 was because of the pill. I stopped taking it ASAP. I am now on my second month without it and I feel so much better. I wish more women knew that this is possible. It would save lives.

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  5. Oh my god! Thank you! I live with pmdd and know I have a sensitivity to progesterone but now I know it's real. Now pregnant and suffering even more, now I know why! Thank you for sharing this, now I just have to make my health providers understand.... Is there any research on this ?

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  6. Hi Shazzy - so sorry to hear that you're suffering with it, but glad the info helps! Do print out this info to share with your health providers; the more people we can educate about this, the better. All the citations for the info are given at the bottom of the post. There's not a huge amount of research, unfortunately, but have a look at the papers and sites I cited and at Prof John Studd's site. Good luck with the pregnancy!

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  7. Thank-you. I am going to sit in my GPs office tomorrow until they take this mirena coil i never wanted out. it makes no difference in the grand scheme what I do and nothing does, of course, at these times. But maybe I will be happy again when the curse of progesterone is removed from my bloodstream.

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  8. OMG OMG OMG. I cannot believe I found this post. Thank you! I have suffered so much in my life because of what you call progesterone intolerance. I can't believe I'm not alone in this. I started having severe psychiatric trouble when I was 11, at the same time I got my period for the first time. I have been on psych meds for the past 20 years (I'm 31) and even with them, I go absolutely nuts before my period. When I was 16, I spent SEVEN MONTHS wigged out in a psychiatric ward after I was put on birth control for a medical condition. That repeated itself a few more times in my early adulthood, until I started refusing all hormones, including Mirena. The doctor urged me to get Mirena but I'm glad I refused, seeing what others are saying here. I'm so excited to read this. I have terrible PMDD and I'm just about ready for a hysterectomy. I'm so glad to know this is a thing that exists, that's not my imagination. Thank you.

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  9. Thanks so much for your comment, Rebecca. It's always upsetting to hear how badly this has affected other people, but also very heartening to help shed some light. Just a few thoughts on hysterectomy. Remember, I'm NOT a doctor so this isn't medical advice, just what I've heard from my own doctors and consultant. Hysterectomy is one of the hard-core options to treat endo, BUT to disrupt the hormonal cycle (which is what's triggering your progesterone), you have to have your ovaries out too. That effectively sends your body into early menopause. That has all sorts of side effects (including osteoporosis), so to prevent that, you need HRT - Hormone Replacement Therapy. Which includes progesterone! Out of the frying pan into the fire.

    There are a few other options which might work for you, though. John Studd (who I cite in this post) talks about treating progesterone intolerance with oestrogen. There are also ways to put your body into temporary medical menopause: GnRH (I think this is less used now?) and antiprogestogens. Again, you're usually advised to take HRT with these, but at least if the HRT sends you loopy, it's all completely reversible. Again, I stress that I'm not a doctor - just wanted to give you a heads-up from what my consultant told me, and some options to discuss with your own doctor. And as almost any woman with experience of endo will emphasise - if your doctor doesn't listen or won't discuss options, change doctor!

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    1. I'm in Arizona, US, so I don't know if things are done differently here. Medical care is abysmal in Arizona, but I'm getting on the horn today to find an appropriate doctor. I have read in the past day about GnRH. The information you've given me is extremely helpful. Would it be alright if I print out your comment to bring to the doctor so I can discuss these ideas? Thank you again. You have no idea what it means to discover I'm not alone.

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  10. By all means, please do! There are citations at the bottom so your doctor knows you're not just quoting "something wot I found on teh interwebz" - doctors have an (understandable) horror of that. It might also be worth going through the posts on specific symptoms (I've written up depression, loss of enjoyment, and paranoia) and looking through the experiences women report in the comments to those, too. Feel free to email me directly at endowriter@gmail.com, too; I have a paper which assesses recent endo treatments, part of which is a run-down of GnRH and antiprogestogens.

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  11. I appreciate this review so much. This is me to a T. I absolutely ADORE Dr. John Studd and his criticism of the Womens Health Initiative that in 2002 I believe has ruined and possibly killed many women by taking them off their much needed hormone replacement. I am disturbed by the "estrogen dominance" fad that really seems to be going around and possibly harm for many women, including myself which nearly put me in the hospital after prescribed multiple OCPs and bioidentical progesterone cream with tachycardia, palpitations insomnia. Thank you, thank you for this article!

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  12. Thank you very much for detailed references!

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  13. I'm in the hell of just I'm pretty sure ovulated the insomnia is making the depression side of things so much worse and my anxiety is through the roof. When my period comes it's like an incredibly release and I can go back to my normal self. My gp just keeps chucking different antidepressants at me and they don't seem to work or I don't think she believes it's severe pms and just keeps saying I'm depressed it's driving me mad going on like this every month. I'm going to print this and take it to the gp with me if that's ok? I'm seriously considering finding the money to see professor studd as he seems to be the only one who takes this seriously. Thank you so much for this article though x

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  14. Thank you for this article. Glad I came across your blog as well. Great work - and research. Just wanted to make you aware of a new organization in the U.S. http://napmdd.org. offering help and support for women suffering from PMDD. Thanks again.

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  15. Thank you for this enlightening article. Like others, I've wondered if I've gone mad each time I've been prescribed the pill, the Mirena, and more recently progesterone cream. My question: my naturopath, despite me telling her that I'm progesterone intolerant, has me on an herbal progesterone balancing product. Is it possible this could have the same "intolerant" impact? It feels so. I've raised my concern with her but she says she's never had anyone react on this product. I don't know where to turn. Many thanks for any assistance.

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    1. You must get the plant based progesterone called utregstan. It saved my life and worked within an hour!

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  16. Thanks for your comments. I don't know about the product your naturopath is using, and I'm not medically qualified to say, but if it feels the same, I think you should trust your own judgement. When I first had the Mirena coil in, I reported side-effects akin to the ones I'd had on the pill, and was told 1) "The dosage is far too low to have side-effects" and 2) "No-one has reported any side-effects". Note that I was busy reporting side-effects right then and they weren't writing them down! A couple years later, at the same clinic, I was told, "Yes, I have heard of that happening, but it is quite rare." A few years further on, they said, "Yes, that's quite common." If you are reacting to something, you don't need the doctor's permission to believe your own experience. And if your doctor is reluctant to believe what you say, I'd suggest you find another doctor.

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  17. I have been to hell and back! Nearly killed myself, was admitted to three psychiatric hospitals I. The space of 3 weeks! It took an ambulance women to ask me if I had had any change of medication recently. I said that they had out me on sertraline an anti depressant when I was admitted to hospital 4 week previously but it had made more suicidal and done nothing. She mentioned my age and menopause and I said "oh, they have just fitted me with a mirina coill 4 weeks ago". "How have you been" she asked. I replied this is the third admission to hospital I three weeks and I want to kill myself. I have gone loopy!" Oh my god she said, I have seen women with no history of mental illness go psychotic on this and I am personally going to get this out on your notes! I got the coil reminded the next day, after the doctors and psychiatrists pooes pooed it and a friend who works at a famous hormone clinic prescribed me a plant based progesterone (the mirina coil is man made) and I was cured within an hour!!! I cannot believe I wanted to kill myself and that my three kids would be better off without me! Hormones are so powerful. I have never had a history of mental illness or depression. If you are allergic to the man made progesterone and if you are in Peru menopause go for the plant based ustergon. It is available on the NHS. It just costs more. God knows how much they spent on my being admitted to hospital, police, ambulances etc. Do not take mirina coil. It is evil!

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  18. Great article, endo writer, thank you. Last week I started HRT and went loopy within 24 hours. I took it for 3 days before realising what was going on, part of which was thanks to finding your article. I then remembered having difficulty with the combined pill 30 years ago. And then I remembered that after I gave birth to twins, my GP practically forced me onto the mini-pill, saying I really couldn't cope with an accidental pregnancy when I had 2 small babies to look after (the fact I had managed not to get accidentally pregnant for 35 years seemed to escape her.) Anyway I became more and more anxious and irritable and upset and depressed and of course I was diagnosed with post-natal depression. Cue 2 years of anti-depressants and psychotherapy. I am now absolutely convinced that if I had stopped the mini-pill then I wouldn't have had PND at all. It makes me very sad to think that the first 2 years of my children' lives, not to mention my marriage were blighted in this way. Thank you for your work in this area.

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  19. Excellent article and can relate to the symptoms etc... having been going though hell for the last 7 months...now at the end of my tether, losing my mind and ready to give up.... Some history, had a full hysterectomy (ovaries removed) when I was 39... had some HRT for 6 months post but struggled with it and came of the patches... no further assistance from the GPs... fast forward... now 51 and had a water infection that must have broke the 'camels back' suffering with anxiety, depression plus all the other symptoms listed above... saw a private GP was early signs of adrenal fatigue and low sex hormone levels... so put on bio-dentical bi-est and progesterone....which then rocketed me of the planet with estrogen level at 243, testosterone at 456 ...progesterone sample was containimated..Saw someone else for second opinion... result estrogen dominance...so spent a month to 6 weeks reducing the oestrogen level...now have progesterone and oestrogen deficiency..so started on Emertia Progesterone Cream... 1/4 tsp twice a day (total 40 mg per day)plus 0.375 mg oestrogen (estroil) cream made symptoms worse.... feel like ending my life...as not worth living with this anymore... reduced the protest cream to 1/8 tsp twice daily and stopped the oestrogen cream ..had a few days break... now started on the Progesterone cream only again 1/8 tsp twice day... still struggling though , anxiety, depression, sweats, disturbed sleep patterns... the progest cream is natural ... could I have an intolerance to the natural progest cream ?? any thing else I can do.... or is this a case of stick with it for a number of weeks to see if can come good....but not sure how long I can last

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  20. Some women are totally intolerant to even their own endogenous progesterone and feel depressed and shitty as soon as the levels start to increase twards the end of the cycle. An an ADHD Peri-menopausal woman I thrive on Estradiol gel and have no adhd symptoms, depression or anxiety and need no ADHD medication on Estradiol transdermal alone. Now I need to find a way of keeping the endometrium from prolieferating to discourage hyperplasia from unaopposed Estradiol therapy. Even natural bio- identical Progesterone after 2 days of only 100 mg at night makes me depressed and hating everything - it is like night and day. Now that I know Estradiol works for me I have to find a way to maintain my access to it and stay functional - it is the best intervention I have experienced in my life since startingmenstruation at 11. Hormone balance is essential to health and so many women are suffering because of social and medical fear and ignroance about hormones. Women are expected to endure decades of decline with a smile and accept this is their fate! WRONG...This month I proved to myself it literally is any form of Progesterone that totally ruins my quality of life. Time to research lower dose options and other Estradiol antagonists that give less side effects, find studies on long term Estradiol use for depression and ADHD without an antagonist and find out about the complications of hysterectomies which ultimately I will have if nothing else works.

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  21. Thanks for the article and all the comments. I had the mirena coil fitted 4 months ago and have had nearly all these symptoms since having never felt depressed in my life! I had a non-hormone coil before but my periods were very heavy. I will go back to heavy periods to avoid all these horrible symptoms on the minera coil!

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  22. Greatly appreciate your article! I feel like I am being mentally kidnapped, tortured and raped every month by Evil Mr. Progesterone. There is a little piece of me still in my brain somewhere but it gets duct taped and gagged and forced to watch as Evil Mr. Progesterone has his way with me. This is no way to live 50% of your life.

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