After several months of waiting, I pushed open the door to the gynaecology clinic, checked in at reception and sanitised my hands with that highly potent alcohol gel that should be marketed as the solution to all sinus infections. I was finally here. I imagined the Jurassic Park theme playing as the consultant opened the door, beckoning me in. My symptoms of pain during sexual intercourse, abnormal bloating, frequent migraines, depressive episodes, and cystic acne – to name but a few – that I had been complaining about since I was around 17 were finally going to be acknowledged and validated. No more dismissal on nutritional grounds (“Oh what are you talking about, you’re tiny! Are you sure it’s not just the gluten intolerance playing up?” – the common response when my shape constantly fluctuates, the classic ‘endo belly’) or poor mental health (“Perhaps it’s just painful because you’re not ‘emotionally connected’ to your partner?” – despite the fact we had been dating for a year and a half).
In fact, it was one of the first times I was informed that the pain I had been experiencing during sex for a long time was not normal – blamed on the “position” – and was actually a sign of endometriosis. According to Endometriosis UK it takes on average approximately seven years for a woman to receive a ‘firm’ diagnosis from when they first report symptoms. Seven years. Put these years into perspective with Cancer Research UK’s claim that around 99.8% of cervical cancer cases are preventable and that endometriosis (the second most common gynaecological condition in the UK) affects 1 in 10 women and an alarming picture of the state of women’s reproductive health in the UK emerges. According to the Royal College of Obstetricians and Gynaecologists’ (RCOG) report this year, more than half a million women are facing “prolonged waits for gynaecology appointments, diagnoses and treatments”. The fundamental question of why it can take all these years to walk through this often inaccessible ‘Jurassic Park’ gate must be answered.
To the women reading this article I ask: what does your seven years look like so far? Sadly, for the majority of women I have spoken to, the experience on the whole tends to be overwhelmingly pessimistic and negative. Personally, having (finally!) received an estimated diagnosis of endometriosis and going through a continuous cycle of cancelled or rescheduled appointments, despite the issue being deemed of utmost urgency, I once again find myself on that dreaded NHS waiting list alongside the 795 patients per 100,000 on the waiting list in England in the aftermath of the Covid-19 pandemic (an increase of 56% to be precise). My five years’ worth of symptoms, which the GP dismissed as side-effects of progesterone that would “just go away”, have left me feeling like the 54% of women surveyed by RCOG who feel: “not very or not at all confident they could get an appointment with a gynaecologist about their endometriosis symptoms if they felt they needed to”. Unfortunately, there appears to be a growing narrative amongst women that access to the clinic through referrals are (in an act of gatekeeping) constantly rejected by GPs. Moreover, worries about the potential, sometimes unbearable, side-effects of contraception – for example the increased risk of blood clots, weight gain, depression, nausea, headaches, decreased sex drive, and hair loss – are shamed, dismissed, and denied, and therefore key symptoms are allowed to linger and go unchallenged. This is the case for a close friend of mine, who in response to mentioning her adenomyosis – a condition in which the womb lining grounds itself into the wall of the uterus, causing extreme pain during sexual intercourse and the menstrual cycle – was told to “use more lube”.
Of course, it goes without saying that extreme waiting times due to a backlog is an expected consequence of the pandemic. Over 180,000 women have been waiting over 18 weeks from referral to treatment in gynaecology, a 383% increase from pre-pandemic levels. Tragically, when reaching out online and asking other women to share their experiences with me, the messages I received overwhelmingly supported the President of the RCOG Dr Edward Morris’ claim that the imbalance between women’s health services and other health services is primarily due to: “women’s health [being] consistently deprioritised and overlooked”. When reflecting upon the inaccessibility of women’s reproductive health services, I wanted to gain an insight into the experiences of women I knew, both old and young and see how their ‘seven years’ looked in comparison to mine in order to understand where this inaccessibility stems from and why it persists. Can we really afford to take the inevitability of a backlog at face value, or is it instead more valuable to consider the ways in which women feel prevented from accessing gynaecological services? The key themes which screamed out to me were as follows: pain not being taken seriously by GPs, slut-shaming when requesting the Morning After pill, the sheer lack of appointments, being shamed for concerns over hormonal-based contraception, the traumatic nature of coil insertion and its after-effects, and, finally, cultural taboos and stigma.
Sadly, I carry my own experience of being slut-shamed by a female doctor when discussing pain experienced during sex – suspected Pelvic Inflammatory Disease (PID) – a week or so after I had been assaulted through ‘stealthing’ (not wearing or removing the condom during sex without your partner’s knowledge, and most importantly, consent). I was criticised with the argument that STIs are not prevented by my coil. Thus, I wasn’t surprised in the slightest by UCL’s John Guillebaud’s comments that: “I speak as a man who is aware, but there are men out there who can be very unsympathetic because they think it’s a “woman’s problem.” This attitude is also there sometimes even among female doctors”. To paraphrase a close friend of mine who put it beautifully, on observing the lack of discussion on women’s issues in her family because of cultural taboos and stigma, she felt she had been “failed by the women around her”, as she struggled to reach out for medical help.
Aside from cultural taboos and stigmas which prevent women from seeking out the medical care they require, there is also growing evidence of systemic racism and discrimination affecting the care and treatment of women of colour that must be addressed. One of the ways in which the insidious nature of institutional racism has presented itself in our healthcare system is in the downright-disturbing finding that Black women are four times more likely to die in pregnancy and childbirth than white women, while Asian and mixed-race women are twice as likely. The stories I have heard from friends of all races and classes having their period pain dismissed by fellow women, pain which is so unbearable that more than 77% of women have reported that their ability to work or take part in social activities had been negatively impacted, or reported incidents of slut-shaming when going in for STI testing or asking for the Morning After pill perfectly sums up the quote from Madeline Albright that: “there is a special place in hell for women who don’t help other women”. As a white woman, I can recognise the ways in which my race has given me privilege in the treatment that I access, and reports on this matter terrify me. For example, a recent project conducted by UCL in collaboration with the Decolonising Contraception Collective and The Faculty of Sexual and Reproductive Healthcare, which records the testimonials of Black women across the UK to combat their lack of visibility, demonstrably found that the care they receive can be tied to their race.
Having a mother who has dedicated most of her life to working with victims of sexual assault, I will always be incredibly grateful to have open conversations in a family setting around taboo subjects of sex and menstruation that many women of all races have been unable to have with their own mothers. I will never forget when she stressed to me that sexual health clinics tend to be more supportive of these issues than GPs; in fact, 46% of women surveyed by RCOG found their GP(s) “unhelpful or very unhelpful”. In contrast with her own experience of being a young woman growing up in the 1980s, repeatedly slut-shamed by medical professionals and adults alike for deciding to go on the pill, a word seen as a filthy taboo amongst conservative adults, many of the young women I spoke to talked of the pressure and shame they felt to go on birth control, despite fears over hormonal side-effects. There is repeated questioning as to why a male version is still unavailable, when the side-effects of male birth control match those of PMS symptoms or hormonal contraception which women have been told to just put up with.
I will always be indebted to her for supporting me in recognising, acknowledging, and validating the trauma I underwent during my coil insertion. which greatly impacted my sexual and mental well-being. This is a trauma which is only just being de-stigmatised and acknowledged in public discussions, most notably by University of Leeds alumni Naga Munchetty last year, who openly called out the coil insertion process by sharing her own traumatic experience. Her statement on the coil reminded me of my own traumatic procedure: “why don’t they use anaesthetic for IUDs?”. The general advice women receive before having their coil inserted tends to be that it will be ‘uncomfortable’, but that taking either Ibuprofen or Paracetamol an hour before should be enough. Similarly to Munchetty, as a young woman who has never given birth, the artificial dilation of my cervix through a speculum felt violating, resulting in twenty minutes of excruciating pain. I then had to return again to get the coil actually fitted, since I was told I was ‘too small’ and needed a GP to do it instead. I was in fact offered general anaesthetic, contrary to that statement, in the form of injection in my cervix. The trauma that manifested sexually – anxiety towards penetrative sex – as a result of the pain and violation I felt combined with the hormonal side-effects of the Mirena coil to take my mental health to an all-time low. It also impacted my relationship with my then-partner.
This is not to say that this is a typical experience for all women. However, a difference between the pain of women who have gone through childbirth versus those who haven’t experienced the speculum (such as in the form of smear tests or coil insertion), needs to be addressed through adequate pain relief. In my recent trip to the gynaecologist, he recognised the trauma I had after my experience as he saw my shaking hands. He suggested an internal examination and told me that there was a gel version of local anaesthetic available which I could use and that it was a situation he had seen all too often. In combatting the declining rate of women who receive smear tests, which can detect ‘preventable’ cervical cancer cases, I believe that instead of focusing entirely on convincing women to attend appointments, attitudes towards pain need to be seriously readdressed. The journalist Marie-Claire Chappet eloquently highlights this: “the fact that the NHS in 2017 had to have an endometriosis campaign called “Believe Women”- targeted at doctors- is terrifying”.
Here are some useful sources if you would like to engage more with this topic:
Written by: Amelia Craik
Edited by: Joanne Spence-Thomas