Written evidence from Ms M Sasso [MEW0070]

Who am I & Why am I submitting evidence to the committee

My name is Monica Sasso, I am a 43 year old woman living in SW London.  I had a non-elective hysterectomy 6 years ago because I had (still have) severe endometriosis, PCOV and chocolate cysts.  My endometriosis was all over my midsection; around my bowel, in my pouch of Douglas, near my bladder.  Images of my ovaries looked similar to smoker’s lungs – not the snowy white little orbs they were meant to be.  The endometriosis and cysts caused me significant pain and required that I take a stool softener daily to have a bowel movement.  I am a professional, I work in the Financial Services Technology sector and am a public speaker, mentor and Non-Executive director.  I am also a Girl Guides leader and an avid runner, cyclist and fitness gal. 

Stats:

Approximately 10%, 10% and 33% of women globally suffer from endometriosis, PCOV or Fibroids respectively. I have the first 2 conditions.

My Experience:

My experience with the NHS and private coverage in the UK is that the classic female issues have been ignored until recently; such as menopause or chronic conditions that require significant care (e.g. endometriosis, PCOV or Fibroids) that force women into early menopause are not covered.  And although they are less ignored, they are still less topics that GPs seem to be educated on.  I remember sitting with a GP once explaining to her what endometriosis really was – she had heard of it, but that was it.  To her credit she researched it and the next time I visited, she gave me a pamphlet about it. 

When I started my endometriosis / PCOV journey as a 31 year old, the NHS / GP was negligent in his misdiagnosis and even aloof with the mindset.  I then went to seek private consultants because I knew the GP was not right.  He felt my tummy and told, me don’t worry you do not have cysts.  I looked at him and asked if this was the only exam he was going to do, and I insisted on gynaecological exam and an internal ultrasound – both privately at that point.

Fast forward 4 years, 2 laparoscopic excisions (incl hysteroscopy and cauterisation of the womb), 2 Mirena coils and countless drug trials and hormone changes, I was faced the option of a life time of discomfort, pain and constipation or a radical hysterectomy when I was 35.  I took the decision, with my surgeon nearly a year later to have the operation, but not before trialling a licensed treatment (that I believe is the same drug they treat cancers with) that left me a stone heavier and immensely depressed. 

I have been on HRT for 7 years, and any treatment I have had post operatively has never been covered by any private medical policy or the NHS.  I self-pay because menopause coverage is an “add on” – and frankly has only been an “add on” / additional coverage item recently. 

I will step back, the NHS reluctantly accepted my HRT prescription from the private surgeon but will only allow me the oestrogen tablets and testogel.  They will not provide me with the implants every 4 months although the Implants are NICE approved.  The trouble with the oestrogen tablets is that those are the “flavour” of HRT that has been known to increases one’s chances of developing breast cancer.  I am far too young to play roulette with breast cancer.  The problem with testogel is it causes very bad side effects that the testosterone implants minimise. 

Equally, I have found my GP Surgery is woefully underprepared and knowledgeable on this topic.  Routine gynaecological visits or breast exams post-hysterectomy (or even in general) are not the norm – especially in covid times and now that I am 43, these are still things I must pay privately (out of pocket with cash) for because I have taken ownership and stewardship of my healthcare and the NHS nor my private medical cover will pay for it. 

I am constantly flummoxed that the NHS will happily dispense the “flavour” of HRT that has been known to cause breast cancer, but not prescribe the types of HRT that do not cause it.  Seems it is a bit akin to cutting one’s nose off to spite its face or as the Americans say, “stepping over a dollar to pick up a dime”.

Summary:

Private healthcare coverage will pay for the treatment and diagnosis of such female conditions but it ends there; as a “transaction”; but women’s bodies are not “transactional” in nature.  Human’s bodies in general are not transactional. 

A company can opt to pay more for a menopause bolt on.  This should be illegal and deemed sexist – do companies pay less for white people and more to provide cover for people of Afro-Caribbean heritage?  Why should an aging female body cost more than an aging male body? Why are women not offered annual gynaecological and breast exams – on the NHS?  Surely these types of exams would help identify any issues, cancers, or even inform women of their reproductive health earlier so they can make decisions that would negate the need for IVF (for example) later in life? 

I think this transactional mindset is also how the GPs / the NHS treat women (well, this is how I have been treated by 2 different surgeries in Swindon and London – the only surgery where I have had amazing treatment was from an older female GP in a village outside of Swindon).  This has to end, a woman going through menopause is not a bad thing, it is not an odd thing, it will happen to all women that are fortunate enough to live long enough.  I am grateful every year I turn a year older, because I am getting the opportunity to get older.

September 2021