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The Guardian: 'Like someone flicked a switch': the premenstrual disorder that upturns women's lives', 2019
- Thread starter Trish
- Start date
It occurs to me than a lot of ME research is done with women whose symptoms such as fatigue, brain fog and depression may be fluctuating with their menstrual cycle. This should be taken into account when getting them to fill in questionnaires during clinical trials - perhaps making sure it's done at the same phase in their menstrual cycle at the start and each follow up point.
Peter T
Senior Member (Voting Rights)
This may reinforce the contention that orthodox modern medicine is not designed for people, rather for men.
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Kitty
Senior Member (Voting Rights)
I had this too (we didn't have a name for it then), but luckily it was much more short-lived. My profound depressions often lasted less than an hour, but I absolutely agree about the switch being flipped – I could feel it happen as clearly as a slap on the face.
One of my final ones began at a red light on my drive home from work, and I had to pull off the road because I could no longer operate the car. I just sat there, unable to move or function, and utterly crushed by the weight of the depression. An hour or so later, it dissolved as suddenly as it started. I'd really have struggled to live with it for extended periods, though; I don't think I'd have been able to work through it. I really feel for the woman in the article, and for anyone suffering from it.
One of my final ones began at a red light on my drive home from work, and I had to pull off the road because I could no longer operate the car. I just sat there, unable to move or function, and utterly crushed by the weight of the depression. An hour or so later, it dissolved as suddenly as it started. I'd really have struggled to live with it for extended periods, though; I don't think I'd have been able to work through it. I really feel for the woman in the article, and for anyone suffering from it.
Agapanthus
Senior Member (Voting Rights)
I am 67 now but in my late 30s and 40s I went through a form of this. I used to feel absolutely dreadful in the week before my period. Terrible brain fog and severe fatigue and like a wound up spring. When I was 43 I remember going to the GP and trying to explain that my PMT symptoms that had been lasting a week, had now extended to 2 weeks before my period - could it be an underactive thyroid I asked? Would she test for it please? No, not possible and no she would not test it!
I changed Drs and saw a man this time who was happy to test everything and found I was borderline underactive thyroid and yes, he would give me thyroxine. For the next few years (until it all went awry again at menopause at 49) I at least had my energy back for most of the month and and the brain fog eased. I still had PMT but not for 2 weeks, only for 1 week or less. It was still very bad at times, but at least not so extended.
Eventually when I got the ME/CFS diagnosis some years after menopause, I realised how similar some of the symptoms were to what I had felt before (mostly the fatigue aspects - not the wound up spring feelings). My migraine aura got worse and worse until years later (only a few years ago) I discovered that a bit of natural progesterone applied as a cream on my skin would improve those aura symptoms for me immensely. I also use Liothyronine now as the Thyroxine stopped working effectively for me.
I changed Drs and saw a man this time who was happy to test everything and found I was borderline underactive thyroid and yes, he would give me thyroxine. For the next few years (until it all went awry again at menopause at 49) I at least had my energy back for most of the month and and the brain fog eased. I still had PMT but not for 2 weeks, only for 1 week or less. It was still very bad at times, but at least not so extended.
Eventually when I got the ME/CFS diagnosis some years after menopause, I realised how similar some of the symptoms were to what I had felt before (mostly the fatigue aspects - not the wound up spring feelings). My migraine aura got worse and worse until years later (only a few years ago) I discovered that a bit of natural progesterone applied as a cream on my skin would improve those aura symptoms for me immensely. I also use Liothyronine now as the Thyroxine stopped working effectively for me.
Simbindi
Senior Member (Voting Rights)
Going through the menopause hasn't improved my fatigue, headaches or pain levels, and the muscle stiffening/cramps in my limbs have actually got much worse. However, I do notice the difference in my mood and ability to control my emotions - I used to get terribly tearful for 2 weeks out of my 4/5 week (irregular) cycle, which was at its most unmanageable for the 4-5 days before menstration and the first 2 days of it.
I must admit, I'm glad that phase of my life is coming to an end!
I must admit, I'm glad that phase of my life is coming to an end!
Mithriel
Senior Member (Voting Rights)
After the birth of my first child I experienced deep black depressions. The first few times I thought it was a reaction to my circumstances which were not very good at that point. Then I noticed the pattern so when it happened after that I treated it like a pain and just endured until it went away. I had a second child less than 2 years later and it never came back like that.
Andy
Retired committee member
‘My self-worth plummeted every month’: the hidden disorder that can ruin women’s lives
"By the time Emily got her diagnosis, she was under 24-hour supervision by her mum, suffering with anorexia and routinely self-harming. Her suicide attempts had numbered “too many to count”. She had seen doctors, was working with a therapist and “doing everything everyone said, but the emotions were exhausting and relentless and stayed there”.
Then she would get her period, and everything would change. “I couldn’t understand how I was in complete distress, and then OK a few days later,” she says.
In 2016, Emily, now 33, was diagnosed with premenstrual dysphoric disorder (PMDD), a little-known hormone-based condition that affects a staggering number of women: about one in 20 of those who have periods suffer with it worldwide. Symptoms include depression, anxiety and irritability, as well as reduced motivation, focus and libido. It can also be life-threatening: 34% of women with PMDD have attempted suicide, according to the International Association for Premenstrual Disorders (IAPMD)."
https://www.theguardian.com/lifeand...he-hidden-disorder-that-can-ruin-womens-lives
Not sure how useful this bit is though
"Dr Audrey Henderson is an evolutionary psychologist and trainee clinical psychologist at Edinburgh University who is researching how thought processes influence the symptoms of those with PMDD. She thinks reframing the condition can help. “If you perceive it as a biological condition that you will inevitably experience for the rest of your menstruating life, that could be really scary. But, if you see it as natural – albeit strong – fluctuations in feelings throughout the month where you might have to do things differently as a result, that’s much more helpful.”"
"By the time Emily got her diagnosis, she was under 24-hour supervision by her mum, suffering with anorexia and routinely self-harming. Her suicide attempts had numbered “too many to count”. She had seen doctors, was working with a therapist and “doing everything everyone said, but the emotions were exhausting and relentless and stayed there”.
Then she would get her period, and everything would change. “I couldn’t understand how I was in complete distress, and then OK a few days later,” she says.
In 2016, Emily, now 33, was diagnosed with premenstrual dysphoric disorder (PMDD), a little-known hormone-based condition that affects a staggering number of women: about one in 20 of those who have periods suffer with it worldwide. Symptoms include depression, anxiety and irritability, as well as reduced motivation, focus and libido. It can also be life-threatening: 34% of women with PMDD have attempted suicide, according to the International Association for Premenstrual Disorders (IAPMD)."
https://www.theguardian.com/lifeand...he-hidden-disorder-that-can-ruin-womens-lives
Not sure how useful this bit is though
"Dr Audrey Henderson is an evolutionary psychologist and trainee clinical psychologist at Edinburgh University who is researching how thought processes influence the symptoms of those with PMDD. She thinks reframing the condition can help. “If you perceive it as a biological condition that you will inevitably experience for the rest of your menstruating life, that could be really scary. But, if you see it as natural – albeit strong – fluctuations in feelings throughout the month where you might have to do things differently as a result, that’s much more helpful.”"
RedFox
Senior Member (Voting Rights)
Smells of "You're a woman, so your symptoms aren't that bad, just deal with it"
From my experience with premenstrual symptoms, it helped enormously when I found out that there was such a thing as premenstrual depression/emotional lability. I had no idea for years why my moods fluctuated so much apparently unrelated to any external factors. I just assumed I was emotionally weak and blamed myself for not being able to think my way out of the black cloud and proneness to tears that happened some of the time.
Looking back, it seems dumb not to have associated it with my menstrual cycle. I think the lifting of the blackness was masked by the fact that I also had several days of severe menstrual pain once my period started to cope with, so any lifting mood was delayed by struggling to appear normal while in sometimes excruciating pain.
Knowing it was a biological condition gave me so much more self confidence, and discovering that taking evening primrose oil helped was hugely empowering. I didn't need psychological therapy, I needed accurate information about the effect of hormones.
Looking back, it seems dumb not to have associated it with my menstrual cycle. I think the lifting of the blackness was masked by the fact that I also had several days of severe menstrual pain once my period started to cope with, so any lifting mood was delayed by struggling to appear normal while in sometimes excruciating pain.
Knowing it was a biological condition gave me so much more self confidence, and discovering that taking evening primrose oil helped was hugely empowering. I didn't need psychological therapy, I needed accurate information about the effect of hormones.
Arnie Pye
Senior Member (Voting Rights)
Now, that is strange (to me). I tried evening primrose oil for period problems, many years ago, and it gave me the worst depression I had ever had in my life, and I got the effect within hours of taking the first capsule. On another forum (not ME or thyroid-related) I came across another woman who had the same reaction to evening primrose oil as me. That's it though - just the two of us. Most women I've read about taking it thought it was wonderful stuff.
I think that's easy enough to explain on the basis that I presumably was deficient in the specific ingredient Evening Primrose oil is take for
(Gamma Linolenic Acid (GLA), an essential fatty acid that provides the building blocks for female hormones), and you and the other person who had the opposite effect were unluckily sensitive to something in it that had the opposite effect.
(Gamma Linolenic Acid (GLA), an essential fatty acid that provides the building blocks for female hormones), and you and the other person who had the opposite effect were unluckily sensitive to something in it that had the opposite effect.
Andy
Retired committee member
Naga Munchetty: I was failed and gaslit by NHS despite debilitating periods
"Naga Munchetty has said she spent decades being failed, gaslit and “never taken seriously” by doctors, despite suffering debilitatingly heavy periods, repeated vomiting and pain so severe that she would lose consciousness.
The BBC presenter, newsreader and journalist told the Commons women and equalities committee on Wednesday that she was “deemed normal” and told to “suck it up” by NHS GPs and doctors during the 35 years she sought help for her symptoms.
Munchetty was finally diagnosed with adenomyosis, a condition where the lining of the womb starts growing into the muscle in its walls, in November last year.
She said she was consistently told by doctors that “everyone goes through this”."
And
"Both women gave detailed evidence of how they struggled to live and work normally over many decades while being repeatedly belittled and failed by medical professionals.
Pattison has only recently been diagnosed with premenstrual dysphoric disorder (PMDD). Now 35, she said she started experiencing extreme symptoms in her late 20s, including “crippling anxiety”, insomnia and fatigue. Doctors in Newcastle and London put her symptoms down to PMS (premenstrual syndrome).
Munchetty and Pattison agreed that the NHS is failing girls and women. They said GPs, specialists and doctors lack the specialism and training required to recognise and treat gynaecological issues that are devastating the lives of women and girls across the UK."
https://www.theguardian.com/society...nhs-despite-debilitating-periods-and-symptoms
"Naga Munchetty has said she spent decades being failed, gaslit and “never taken seriously” by doctors, despite suffering debilitatingly heavy periods, repeated vomiting and pain so severe that she would lose consciousness.
The BBC presenter, newsreader and journalist told the Commons women and equalities committee on Wednesday that she was “deemed normal” and told to “suck it up” by NHS GPs and doctors during the 35 years she sought help for her symptoms.
Munchetty was finally diagnosed with adenomyosis, a condition where the lining of the womb starts growing into the muscle in its walls, in November last year.
She said she was consistently told by doctors that “everyone goes through this”."
And
"Both women gave detailed evidence of how they struggled to live and work normally over many decades while being repeatedly belittled and failed by medical professionals.
Pattison has only recently been diagnosed with premenstrual dysphoric disorder (PMDD). Now 35, she said she started experiencing extreme symptoms in her late 20s, including “crippling anxiety”, insomnia and fatigue. Doctors in Newcastle and London put her symptoms down to PMS (premenstrual syndrome).
Munchetty and Pattison agreed that the NHS is failing girls and women. They said GPs, specialists and doctors lack the specialism and training required to recognise and treat gynaecological issues that are devastating the lives of women and girls across the UK."
https://www.theguardian.com/society...nhs-despite-debilitating-periods-and-symptoms
Binkie4
Senior Member (Voting Rights)
I had pre- menstrual problems from after the birth of my second child when I was 31 and continued the treatment I was given for it until about my early 60s. I realise this sounds a bit odd since I completed the menopause at a very average age of 51 but I became dependant on the treatment I was prescribed for it ( hormones), so that became very complicated but they were, with the help of an endocrinologist, eventually successfully withdrawn.
At the time I was diagnosed, it was called premenstrual syndrome: I was diagnosed by Dr Katharina Dalton in Dec 1979 and prescribed cyclogest, a natural form of progesterone.
The symptoms I had were identical to PMDD and developed when my periods returned after the birth of my second child and it was an utter nightmare for 10 or so days before each period. Depression, blackness, anxiety, episodes of panic were all severe. It was really hard to care for a very young baby who didn't sleep well and a toddler with no family nearby and having only recently moved to the area.
My saviour was my GP who I was seeing a lot because both children were ill and in hospital for short spells. I hadn't a clue what was happening to me. My older child had been easy, slept well, life was easy but then it became so hard. It was a real struggle. He commented that half the time when I saw him, I was fine and the other half I was very depressed, and realised it was pre- menstrual. He referred me to Dr Dalton who practised in London. Her NHS waiting list was 2 years long so although we had no money, I saw her privately. It cost £50. She recommended cyclogest which my GP prescribed and it worked like a dream. Within 2 months the world was much brighter; colours really became brighter and mood was lifted.
The whole thing is a very long story.
It seems that Dr Dalton may have been ahead of her time
From googling
"Premenstrual dysphoric disorder (PMDD) is triggered by gonadal hormone fluctuations. Treatment with selective serotonin reuptake inhibitors represent a valid solution to managing PMDD. Selective progesterone receptor modulator is a potential new treatment for PMDD."
(my bolding)
I saw something in a newspaper within the last few days suggesting that hormone treatments were the way forward with PMDD. Will post it if I find it.
At the time I was diagnosed, it was called premenstrual syndrome: I was diagnosed by Dr Katharina Dalton in Dec 1979 and prescribed cyclogest, a natural form of progesterone.
The symptoms I had were identical to PMDD and developed when my periods returned after the birth of my second child and it was an utter nightmare for 10 or so days before each period. Depression, blackness, anxiety, episodes of panic were all severe. It was really hard to care for a very young baby who didn't sleep well and a toddler with no family nearby and having only recently moved to the area.
My saviour was my GP who I was seeing a lot because both children were ill and in hospital for short spells. I hadn't a clue what was happening to me. My older child had been easy, slept well, life was easy but then it became so hard. It was a real struggle. He commented that half the time when I saw him, I was fine and the other half I was very depressed, and realised it was pre- menstrual. He referred me to Dr Dalton who practised in London. Her NHS waiting list was 2 years long so although we had no money, I saw her privately. It cost £50. She recommended cyclogest which my GP prescribed and it worked like a dream. Within 2 months the world was much brighter; colours really became brighter and mood was lifted.
The whole thing is a very long story.
It seems that Dr Dalton may have been ahead of her time
From googling
"Premenstrual dysphoric disorder (PMDD) is triggered by gonadal hormone fluctuations. Treatment with selective serotonin reuptake inhibitors represent a valid solution to managing PMDD. Selective progesterone receptor modulator is a potential new treatment for PMDD."
(my bolding)
I saw something in a newspaper within the last few days suggesting that hormone treatments were the way forward with PMDD. Will post it if I find it.
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