“Which one of us wants to admit to wanting to die 12 times a year”

A moving and powerful comment from a reader of this blog.

‘Hello. Are you still here?

I just had my tubes tied earlier this year and begged for a hysterectomy because PMDD is ruining my life. They were very concerned but had no idea what I was even talking about.

I am 37 and have 5 children as I could never tolerate birth control – it made PMDD worse. I have moved away from entire life to try to solve this but upon finding these posts…

I do not believe there is anything that can be done naturally and that misinformed doctors have done me a horrible disservice. Now I will have to have 2 surgeries and the scar tissue will hurt worse. However, that would be a small price to pay to be able to live a life I have never had.

The patriarchal medical community has been mishandling women since the time time they outlawed midwifery and began to try to figure out the mystery of the female body on their own.

They have no place trying to tell us how our bodies function and they need to stop interfering with the the natural essence of child birth as well. It is NOT a medical emergency and doesn’t even have to be painful for 90% of women. The information in itself is fear based and nonsense for the most part. Women do not have to be wheeled in on a gurney screaming at the top of their lungs because simple understanding has been robbed from them about what their bodies were born to do.

I started my period in the 5th grade and also tried to kill myself that same year. What 5th grader does that?? I have spent my entire life fearing that I was certified as well, but I’m not. I am actually brilliant and my brain gets attacked month after month as I suffer in silence.

I too have been put on antidepressants 10 years ago but PMDD is NOT depression. On the days when your brain is normal, those drugs are doing far more harm than good and robbing you of feeling anything. Turning off the brain of a woman with PMDD is not a viable solution by any means and antidepressants can often intensify suicidal thoughts making this a horrible misdiagnosis and treatment choice.

Which one of us wants to admit to wanting to die 12 times a year because I never have wanted to. What a scary existence to have lived in the shadow of my own life feeling utterly alone and fearful for what it would mean for me as a mother to admit any of this.

Enough is enough and I have not had the opportunity to embrace the full beauty of my life and I did not know why!

Last year a girl named Gia killed herself and it was brought to my attention. This girl had everything going for her and she did not have to die. I think of her everyday and my life is somewhat dedicated to her now. Everything I do, will be for her so that she will not be forgotten. The non-supportive people around us who know even less than the doctors do, can be the biggest danger to us and I have completely isolated myself to avoid these types of triggers. For Gia, it was her father, whom she felt did not love her – the escalated abandonment issues are unbearable in my opinion – and when her boyfriend said that he too did not love her anymore she went straight home and hung herself. Last month, when I could not get up off of my bathroom floor, I googled her again. It was a vacuum.. a vacuum cord and a spiral staircase. Did she use the vacuum for weight…? I just cannot believe it. I keep her very close to my heart and I have moved away to stand up for her. For myself. For all of us.

We need a voice. We must find the way to govern our own bodies. This condition is dangerous and I bet you there are women locked up because of this. We need a voice. That is why I am here. I hope everyone one of you will join me.’

The Beast, 24/8/14

Depression: ‘You would never say: “What does he have to be cancerous about, diabetic about, asthmatic about?”’

I wanted to share this brilliant article about depression by former spin doctor (to then British Prime Minister Tony Blair) Alistair Campbell, writing for The Independent.

But when the moment comes, when you know that depressive cloud is moving in, and you cannot stave it off, and it is going to enter your head, your chest, your guts, your legs, your toes, your bones, your teeth and every fibre of mind and body, it is like the first time all over again. Dead and alive at the same time.

Thank goodness that times have changed, and someone so high profile can be so honest, without it damaging his career. Although would a high profile women in that world feel able to do the same currently?

I am very thankful indeed that I am largely free of the Black Dog these days, post hysterectomy for PMDD.

I still need to be mindful of it though, if I’m very run down (or if I have a long run of poor quality nights sleep), in case I feel it looming, as it did this April. And I need to be particularly mindful as the season changes from winter to spring. I have an old packet of 10mg Citalopram tablets (SSRI anti-depressants) – breaking them in half and taking just 5mg per day for a couple of days works well for me. I’m lucky in that I feel the drug kicking in within hours, in common with the experiences of some other women who have / had PMDD (severe PMS) that I know of. I went to my GP last week to restock for the next time I need it. She was unfamiliar with it being used in this way, but after speaking to a colleague she agreed to give me a prescription.

Sylvia Plath’s suicide traceable to severe PMS/PMDD?

Compelling 22 year old evidence that the iconic poet had severe PMS/PMDD. Why is this not better known?

‘If I didn’t have sex organs, I wouldn’t waver on the brink of nervous emotion and tears all the time’

Sylvia Plath, journal entry, 1950

This article by author Kate Moses on the legendary poet Sylvia Plath sent shivers up my spine! Using the evidence in Plath’s letters, poems, biographies, journals and calendars, a graduate student named Catherine Thompson proposed way back in 1990 that Plath suffered from severe premenstrual syndrome. Thompson traced numerous negative events in Plath’s life to the luteal phase of her menstrual cycle, including suicide attempts and antisocial behaviour.

I had long known that Plath is generally assumed to have had bipolar (or bipolar II) disorder, but this was the first time I had heard of this fascinating hypothesis, I wonder why it’s not better known outside of academia? As a reader of this blog commented, perhaps it’s another case of ‘women’s issues’ being over looked by a patriarchal medical establishment. “It is quite a shock to digest..after thinking for so long that Sylvia’s subconscious mind was her prison, and to suddenly realise it may well have been in part, or wholly, her body”, wrote Olwyn Hughes, Plath’s sister-in-law, to Thompson.

Tragically, just weeks before her final successful suicide attempt at her London home in 1963, aged 30, Plath was referred by her doctor to THE only PMS specialist practising in the world at the time, London-based pioneering PMS researcher Dr Katharina Dalton*. Plath killed herself before she had a chance to be treated by the  ‘prophet of PMS’, who coined the name ‘Premenstrual Syndrome’ in 1953. Dalton later said that she believed Plath did have PMS.

Kate Moses:

As unmistakable as were Plath’s volatile emotions in the (heavily abridged) 1982 journals, the heavy editing of the text necessarily made it hard to discern the patterns to her moods. Even so, there did seem to be a detectable pattern, and it did not seem then, nor had it seemed to the people closest to her during the last years of her life, to be merely a function of temperament.

Plath’s “unexplained” fevers, which would recur and become immortalized in the “Ariel” period, are recorded exclusively in the luteal phase of her cycles, as are a vast majority of her chronic sinus troubles. Using both the unabridged journals to assess cyclical patterning and Plath’s calendars from 1952 and 1953, in which Plath recorded her periods through July 1953, it seems overwhelmingly likely that Plath was, as Thompson contended, in either the luteal or the perimenstrual phase of her menses at the time of her 1953 suicide attempt.

It’s interesting that Plath had ‘unexplained fevers’ and  ‘chronic sinus troubles’, as cyclical flu-like symptoms in the luteal phase of the menstrual cycle suggest an intolerance/sensitivity to the sex hormone progesterone, which PMS/PMDD sufferers have.

Catherine Thompson, 1990:

Like many women with PMS, Plath seems to have experienced relief from cyclical symptoms during the last two trimesters of pregnancy and to have suffered from lengthy postpartum depressions.

Accurate medical knowledge of PMS has become available in the United States only in the last ten years, and Plath herself could not have known that her psychological experience was a result of a hormonal condition. Yet the concerns of her work and the imagery of her poems suggest that she did have at least an intuitive understanding of the relationship between her fertility and her suffering.

PMS often runs in the family. “Sylvia’s daughter..suffers quite badly from PMS but is, in these enlightened times, aware of it and treats it”, wrote Olwyn Hughes of her niece, Frieda Hughes. Hughes, a painter and poet, who has been divorced three times and has no children, is known to have suffered from depression, an eating disorder and chronic fatigue – it’s pure speculation on my part, but I wonder if these were PMS related? Hughes told the Guardian in 1997 that she’d had a hysterectomy in her 30’s after ‘the collapse of her health’. I do not know the details surrounding Hughes’ hysterectomy, but she would have needed to have had her ovaries removed (not just her uterus) to be cured of PMS. PMS symptoms can continue in hysterectomised women who keep their ovaries.

In 2002, aged 42, Hughes wrote, “My fury at the inability to read, or think, or make a choice between two of the simplest things – such as tea or coffee, orange or apple juice – incapacitated me. And the angrier I got, the shorter the period of time I was able to remain awake. After various tests, doctors diagnosed me with myalgic encephalomyelitis, or chronic fatigue syndrome. It was, my specialist told me, what you had when there was nothing else they could pin the blame on… I might be unable to read a book or a newspaper article…struggling through the mud that clogged my head”. If Hughes still had her ovaries, perhaps the ‘muddy head’ and fatigue could have been due to declining estrogen levels with the approach of the menopause? Or, if her ovaries were removed, perhaps Hughes needed HRT (or for an HRT regime to be tweaked)?

*Dr Katharina Dalton’s studies on PMS are now widely thought to be flawed – my understanding of this is that Dalton believed in progestogen therapy for PMS – but most severe PMS sufferers are now thought to be progestogen intolerant, and to be estrogen deficient. However she played a pivotal role in establishing PMS as an area of inquiry.

MOSES, Kate, 2000, The Real Sylvia Plath, salon.com
THOMPSON, Catherine, 1990, Dawn Poems in Blood: Sylvia Plath and PMS, TriQuarterly Magazine
SLATER, Lauren, 2004, Prophet of PMS, New York Times
HUGHES, Frieda, 2002, Father Dear Father, Telegraph

Quirky book on sex hormones, a useful introduction to which does what!

I recently dipped back into my old copy of The Alchemy of Love and Lust by sex therapist Theresa L Crenshaw, published in 1997. I cannot recommend this book highly enough as a lively and quirky introduction into how our different sex hormones make us behave, it’s particularly helpful for anyone battling PMS/PMDD for remembering which hormone does what and when.

Later an AIDS advisor to the US government, Crenshaw coined the now infamous phrase “You’re not just sleeping with one person, you’re sleeping with everyone they ever slept with”, which became the motto of the safer-sex movement. I wondered why I hadn’t seen any further books from her and did a quick search tonight, only to learn that she sadly died of cancer a few years after ‘Alchemy’ was published, here’s an obituary.

Years ago, in another life, I took the book along to a GP appointment to discuss my concerns about the affect the Pill might be having on my libido – the GP dismissed the book as “pretty heavy stuff” and wouldn’t discuss it. When I complained of having gone off sex with my (then) partner, she suggested that I “lie there and let him get on with it”. I was horrified and could hardly believe what I was hearing, she all but said ‘think of England’ – such antiquated advice! [Note: My libido came back when stopped taking the Pill, and when finally I twigged that the relationship was over!]

23 reasons why I want a hysterectomy for PMDD / severe PMS

Two nights ago I stayed up way too late doing extra online research into the pros and cons of hysterectomies, after foolishly ‘un-ignoring’ and reading some posts from a well known provocateur on the NAPS forum (I know, don’t feed the trolls!). I love research and I want to be sure I’ve covered all bases, but I got myself into quite a state! Luckily my jolly chap was there to give me a hug.

You see, there are some extremist propaganda sites out there whose motive is to scare women away from hysterectomy, as opposed to helping them make the right choice for their own body. In the past some women, particularly in North America, have been treated insensitively by the patriarchal medical establishment and there are some horror stories (like ovaries whipped out without consent just because you’re over 40, vaginas cut and made narrower without consent..*shudder*), I’ll post about this topic another time.

I woke up today feeling very well rested and clear headed, glad I didn’t fire off a letter yesterday postponing the operation! Instead I fired off this list:

23 reasons why I want a hysterectomy (including removal of the ovaries):

1. Current thinking is that it is the only ‘true cure‘ for severe PMS/PMDD.
2. Once the HRT is balanced I’ll be free of cyclical depression (joy!) and..
3. Suicidal thoughts (experienced during the worst throes of PMDD).
4. Jekyll & Hyde behaviour.
5. Awful menstrual cramps.
6. Birth control hassle (I’m child-free by choice).
7. The hassle of having periods.
8. No more smear tests.
9. I’ll never get cancer in those areas (my mother had a hysterectomy in her 30’s after a smear test detected pre-cancerous cells).
10. I haven’t had a bleed since June 2011 as I stopped trying any further different types of progestogens (I’m severely progesterone intolerant). (If you have estrogen therapy, which I do, and a uterus you need to shed the lining sometimes, otherwise you are at risk of developing ‘endometrial hyperplasia’=cancer of the womb lining).
11. I won’t lose my partner to my extreme mood swings.
12. I can make more work.
13. I can make more money, see projects through, be consistent.
14. I’ll be stronger / more resilient both in my personal life and in my career.
15. I’ll be better equipped to deal with stress (I like big projects!).
16. I won’t be the fearful, troubled person that I am in the throes of PMDD. She’s a real bore.
17. I don’t want to ruin the rest of my 30’s or 40’s, a really key time in my career (parts of my 20’s and early 30’s were very difficult due to depression, which I now think was cyclical depression – part of PMDD, hormone-related rather than psychological).
18. Less/no binge eating or cravings (130lb in 2005, I loved it!).
19. No monthly crash / loss of confidence.
20. More consistent sleep.
21. No anti-depressants (I hate that ‘flat’ feeling).
22. Less of a need to shop! (I’ve hoarding tendencies).
23. If I don’t have the operation I’ll be perimenopausal (pre-menopausal) in 5-10 years time (possibly less), which will bring its own mood problems for someone with my history..

Downsides of a hysterectomy

1. ALL operations carry some risk and I am not undertaking it likely, i.e. my surgeon says that there is a one in a thousand chance that when he goes in through my belly button laparoscopically he may accidentally puncture the wrong organ (I don’t have endometriosis so my organs aren’t stuck together, so I should be ok).
2. It may well take some time to balance the HRT so I’ll probably have to deal with some menopausal symptoms poking through during this time – but I’m under the care of THE top people on the NHS.
3. Ongoing use of HRT may bring it’s own problems (controversial topic), OR it may protect me!
4. Psychological implications – however there are massive psychological implications for me NOT having the operation, see list above!
5. No uterine orgasmic contractions (no uterus!), so orgasms may feel different.
6. Possible lower sexual response/libido – but, living with PMDD is very bad for my relationship!

So my eyes are WIDE open! The hysterectomy is scheduled for 23 February 2012, on the NHS. Everyone needs to do what’s right for them, and this feels like the right choice for me.