Life after hysterectomy for PMDD / PMS [aged 35]. UK

Life after a hysterectomy for PMDD / severe PMS, aged 35. It's vital that BOTH OVARIES are removed. Yes, it worked!! I am a strong advocate of HRT.

Month: January, 2012

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

Nulligravida (woman who has never been pregnant). 25 days until hysterectomy for PMDD

I’ve been seriously considering remaining child-free for two years now (I’m 35), and I am content with my decision, as is my partner – hence this blog. There is no way that I can possibly pursue my vocation with the degree of intensity with which I’d like to, AND be a good parent. Broody in my twenties, the feelings petered out as I began making art again (after a long break due to loss of confidence following depression).

I was expecting to let my fertility quietly drift away as I aged, instead I’ve found myself having to confront it head on since I learnt that a hysterectomy is currently the only permanent cure for severe PMS/PMDD twelve months ago (I am determined to be cured). I’ve found myself thinking about my options daily, and I’m so tired of obsessing over it! It’s so easy to over think, in a funny way it’ll be a relief to be past this in 25 days time, when I have a hysterectomy – I’m glad that the wait for the operation isn’t any longer. I wanted to share this Guardian problem page, purely for the insightful reader comments below it about the motherhood dilemma. This comment from ‘oommph’ resonates with me.

What I do say is “walk the walk” (a more positive spin on “don’t expect to have cake and eat it”). Go down the reproductive road, then don’t moan about over-population or fake concern about the environment. Accept that you will be a homemaker / provider for 20 years who will be watching her kid-free female peers living a very different life and often getting longer-term rewards that you won’t.

If I had wanted children, the advice from doctors was to have them ASAP. It would have meant not being able to have treatment for PMDD during the time when we were trying to conceive, so I would have had to go through the terrible monthly crashes again. Plus women with severe PMS/PMDD are at risk of having Post Natal Depression (PND), possibly very severely, which is a very frightening prospect (there’s more about this in the book Women’s Moods).

For women with the most dangerous kind of PMS/PMDD, it’s not an option to stop treatment even for a few months to try and conceive, as they are a danger to themselves (risk of suicide, self-harm, criminal behaviour). These women currently face an agonising lack of choice regarding future pregnancies and I feel for them deeply.

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.

Alchemy of Love and Lust

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.

29 days until my hysterectomy for PMDD / severe PMS, aged 35

In January 2011 I learnt from my online research that a hysterectomy with removal of the ovaries is currently the only true cure for PMDD / severe PMS. I was very upset to learn this.

A year later, after quite a journey, I have a date for the operation – 29 days from now.

I feel

  • Calm and centred
  • Relieved that I’ve made a decision
  • That I’m in the best possible care
  • Glad that I’ve finally plucked up the courage to tackle this once and for all
  • Thankful that I am someone who is good at research, so I’ve been able to get to the bottom of this illness

I posted this update on the fantastic NAPS forum (National Association for Premenstrual Syndrome) today:

“The Christmas break/New Year gave me a chance to reflect even further. I have a date set for a hysterectomy (laparoscopic, with ovary/cervix removal) – 23 February 2012! It’s being done at Queen Charlotte’s & Chelsea on the NHS. I had an appointment there yesterday, they can fit you in very fast regarding the operation date as most patients have cancer. Normally after an appointment at Queen Charlotte’s I’ve felt quite emotional/tearful, but this time I felt elated and yet very calm!

As I live 100 miles away, they are letting me stay overnight the night before, so I’ll be there for a total of 3 nights. My partner will come to collect me on the Saturday, but if my circumstances were different they’d let me travel home alone on public transport. I can resume normal day to day activity after about 1 week, if I feel up to it. No intercourse for 8 weeks. As I don’t have endometriosis the op should all be quite straight forward, since my organs won’t be stuck together. As I’m already suppressed with the Decapeptyl, apparently I shouldn’t suffer re a ‘crash’ in hormones after the surgery.

I’ve been on Decapeptyl (GnRH) since May 2011, plus estrogel & testogel. I tried several different types of progestogens but have not found one I can tolerate, so I haven’t taken any since May. The Decapeptyl made me feel great from June-November, but my last 3 month injection doesn’t seem to have been nearly so effective and some symptoms have come back. albeit more manageable (I understand that symptoms can break through with long term use); this has made my decision much easier. I understand that I could have tried swapping over to Zoladex if I wanted to stay on GnRH’s for longer.

I am childfree by choice (aged 35) and have been considering remaining so for over 2 years, which also made the decision easier, although I still did a great deal of soul searching and research. I could have seen a psychologist on the NHS to discuss the impact of the op if I had wanted to. I’m going to see a psychosexual counsellor about my low sex drive, on the NHS; I will also try taking a little more testogel to see if that helps. Aside from this I have a very good relationship with my partner; we had a great sex life until we moved in together and I couldn’t shield him from the PMDD/Jekyll & Hyde behaviour any longer (although I had warned him about it). PMDD has destroyed some of my relationships, and nearly destroyed others, and it’s played absolute havoc with my career, which is extremely important to me.

The NAPS forum, and the knowledgeable women on it, has been an absolute godsend for me! It has empowered me and taught me how to get the treatment I need from the NHS. Without it I might have spent thousands on private treatment, which I can’t afford; or I might still be wondering if I had bipolar disorder or have cyclothymia, or taking anti-depressants which left me flat / fuzzy headed and almost unable to work, let alone be creative.”