Sorry - this is long.
This is an update following my NHS consultation with a gynaecologist. My telephone appointment was turned into a face-to-face appointment (as Covid cases permitted) which led to me having a physical examination. The gynaecologist (now male) confirmed that only a hysterectomy would manage my heavy menstrual bleeding. In the allocated NHS appointment length, however, he did not have time to address my concerns about progesterone intolerance or managing my symptoms whilst I wait for the hysterectomy (a current wait time of at least 12 months on the NHS).
My GP was therefore forced to refer me a second time to the gynae department (this time to the HRT team) who advised that no, I could only be prescribed oral utrogestan as the progesterone element of my HRT - their interpretation of the NICE guidelines is that vaginal dosages are not available on the NHS for HRT. Neither was I permitted to take the route available to PCOS sufferers (who, I believe, do not have periods), which is to take progesterone that triggers bleeds on a three-monthly basis, rather than every month. This could have mitigated the side effects of the progesterone intolerance. On the NHS, I was therefore condemned to either insomnia 50% of the time or sleeping pills/ anti-depressants.
I am extremely fortunate in that I have access to private healthcare through DH’s work and, following a telephone consultation with the same gynaecologist, I have now secured not only a private prescription but also a date for a hysterectomy privately (this autumn). Ironically, I am fortunate that my menstrual bleeding is so bad (!) that I can be referred for a hysterectomy on the NHS. Many progesterone intolerant women are forced to find the money for this operation on a private basis or put up with the debilitating side effects until the menopause eventually comes around.
The NHS is fundamentally failing a significant proportion of women, 20% of women are estimated to be progesterone intolerant to some degree (although, having read Caroline Criado Perez’s excellent book “Invisible Women” (especially the chapter entitled “The Drugs don’t Work”), one wonders how accurate this estimate is). This is scandalous. The symptoms of progesterone intolerance can be crippling and can start in puberty with PMS. What’s more they can also creep up on you in an insidious way. I think that, in the very beginning, my body was able to tolerate the progesterone-only contraceptives but, as my oestrogen levels began dropping as I became peri-menopausal, the symptoms became steadily worse.
In the olden days, when my mother was of child-bearing age (!), the NHS used to whip out women’s wombs at the first sign of any trouble. My mother had a hysterectomy at 38, I am 49. In these cost-conscious times I suspect (but do not know) that the NHS is increasingly relying on the cheaper and less invasive route of prescribing mirena coils as a reliable form of contraception and to treat heavy menstrual bleeding. Whilst this is entirely understandable, it needs to be recognised that this approach does not suit a significant proportion of women. Yes, it solves the problem of unplanned pregnancies and heavy menstrual bleeding but, in some, I believe, it triggers a vast array of debilitating symptoms which have, hitherto, been roundly dismissed by many in the medical profession as “All in her Head”.
The brain fog had me questioning whether I was experiencing early onset dementia. I lost my ability to concentrate on anything for longer than a few seconds (I would lose my mental thread mid-sentence), I could not read for pleasure as I lacked the concentration span, my vocabulary shrank, Stepford Wife-like - I was there in body but not in mind. Not only could I not sleep between 3am and 5am, I also experienced low mood and hair loss - all of which I have now had confirmed by my consultant, were CAUSED by my prescribed progesterone-based contraception and the progesterone element of HRT. ie these symptoms were distinct from just (!) being peri-menopausal. In the meantime, over the course of many years, I had had repeated blood tests to check whether I was peri-menopausal (all came back “normal”), I repeatedly declined prescriptions for anti-depressants (as I just knew that that was not the cause of my problem), I was referred to a thyroid consultant (who suggested that I should see a psychiatrist (!)) and to a sleep clinic. In theory, I have been available to return to work since 2015 and yet I have not had the “head space” to do so until now. I have therefore lost out financially over those years and will now find it even harder to return to the workplace. This is scandalous.
Many middle-aged women are already juggling caring responsibilities for children and parents with careers. They can ill afford to be let down in this way. I have variously heard of marriages failing and high-flying careers being willingly surrendered as women buckle under the sheer weight of managing their progesterone intolerance symptoms with these competing demands.
The NHS urgently and radically needs to improve its handling of this by:
1.Teaching all trainee and existing GPs that progesterone intolerance exists and can become apparent in patients at puberty, post-natally and peri-menopausally. They are in the front line of managing women’s symptoms. It is not “All in Her Head”.
2.Recognising that a patient’s progesterone intolerance may require a more nuanced approach to prescribed contraception and HRT. The current approach is the equivalent of offering NHS bras in only, say, 5 sizes. Quite clearly, that would be ridiculous.
3.Recognising that a GP referral of a woman to an NHS gynaecology department for EITHER “Abnormal bleeding" OR an “HRT query” is an artificial and desperately inefficient distinction leading to the duplication of admin and work. Many women’s symptoms require medical advice under both categories and this should be dealt with in a single appointment (as is done privately). It would probably save the NHS money on consultation costs in the long run.
Stepping off my soap box now but, in addition to the links I have included in my post upthread, you may also want to read the following:
www.menopausematters.co.uk/forum/index.php?topic=32595.0
These last two relate to teenage girls but the symptoms of hormone imbalance may ring some bells in older women too.
coyleinstitute.com/understanding-teenage%20hormone%20imbalance/
www.mdedge.com/pediatrics/article/206541/mental-health/consider-hormones-and-mood-adolescent-girls