Female Healthcare - ‘Do you think it could be your period?’ ‘This is very normal for girls of your age.’ ‘Just take some paracetamol and those period pains should become more bearable.’
‘Do you think it could be your period?’ ‘This is very normal for girls of your age.’ ‘Just take some paracetamol and those period pains should become more bearable.’
Unfortunately, these are the phrases too many women are met with when trying to voice genuine concerns regarding their health. In a study conducted by the Department of Health & Social Care, more than 4 in 5 women (84%) responded that there have been times when they were not listened to by healthcare professionals1. Participants also said they feel their suffering is particularly ignored when it comes to issues such as puberty, fertility, and menopause.
However, published on the 20th of July 2022, the UK Government announced a 10-year plan to ‘improve the health and wellbeing of women and girls in England’2. From this plan, it appears Ministers will act to tackle and improve the findings of the Department of Health & Social Care’s April 2022 survey, attempting to break down the barriers between women and comprehensive healthcare.
How exactly will this happen?
It appears from the announcement the predominant ways the Government will work to bring health equity will be through education and additional funding.
With additional mandatory training, medical students will be required to take new exams focused on menopause and common gynaecological disorders in order to advance the diagnosis and treatment of women’s health issues. For instance, when considering contraceptive options, instead of researching the most effective type, you instead searching for the least painful, or least intrusive. Countless girls have come online to share their experience with hormonal contraception. Many women related to being put on the pill as early as 12 in response to period pains, acne, or other ambiguous aliments. Consequentially, if they choose to come off the pill, they can find themselves an entirely different person, both physiologically and mentally. Studies have shown hormonal contraception can actually remodel the brain3; research also found that women taking contraceptive pills containing androgenic progestins have lower verbal fluency (the ability to think of new words), a trait more common to a man’s4￼. With little improvement since its introduction5￼6￼. The process of pairing women with their ideal form of contraception is often trial and error based, as the presence of side effects and their severity differ from woman to woman. This can be due to their sensitivity 7￼. However, this area of medicine 8￼. Women are limited in their choices due to pharmaceutical companies’ failure to encourage development. Between 2017-2020, there were only 23 industry-funded clinical trials9￼10￼.
With research, comes improved education. The Accelerating Innovation for Mothers Initiative backed by the Melinda Gates Foundation, is working to end the stigma around carrying out drug trials on pregnant women. The AIM team are reportedly working with pharmaceutical companies to fund and secure clinical trials involving pregnant women, after having identified and edited down a selection of drugs in production that could be used for pregnancy-specific conditions. With more testing, the proposed change recognises the impact research has into future treatment and female health. With this, there will be additional mandatory training to better treat female medical conditions, and updated guidance around conditions such as the treatment of severe endometriosis.
MPs have called for new menopause ambassadors to keep women in the workplace, as studies have proven that an employer’s lack of support for menopausal symptoms is pushing ‘highly skilled and experienced’ women out of work, with knock on effects on the gender gap, pension gap and the number of women in senior leadership positions11. Additionally, women working in the NHS are struggling to manage the physical symptoms of their peri/menopause due to shift patterns, ward environments, wearing PPE, and lack of time to use toilets12. As for funding, the change has promised £10 million worth of funding for breast cancer screening, this will pay for 25 mobile units in areas with low testing rates. MPs are urging the government to remove dual prescription charges for oestrogen and progesterone as part of Hormone Replacement Therapy nationwide13. Free access to NHS fertility treatment will be expanded, following the 2021 BPAS investigation that found 76% of clinical commissioning groups required same-sex female couples to self-fund a minimum of three cycles of artificial insemination. This can cost up to £1,600 a cycle14. There will also be a drive to remove the ‘postcode lottery’ in access to IVF treatment for same-sex and heterosexual couples.
Though these changes sound promising, and redemptive for the many patients who have spent months, even years attempting to diagnose a ‘mystery’ illness. I felt it would be beneficial to discuss this proposed change with Julia, also known as @endometriosis_awareness_page on Instagram. Julia shares about her endo updates, with informative graphics on matters such as ‘understanding the pain scale’ ‘what is ableism’ and ‘what it’s like to get a new endo symptom’.
‘At age 16 I got a stomach ache, I had just started sixth form and my A-levels but this stomach ache would not go away. After trying every painkiller I had access to, I went to see my GP. At my very first appointment my doctor couldn't tell me what was happening. As I was leaving the appointment my doctor called me a "mystery". The Department of Health & Social Care’s study underlined that this is quite a common experience shared by women.
Elinor Cleghorn, published in Time last year, wrote ‘Women are less likely to be referred for further diagnostic investigations than men are. And women’s pain is much more likely to be seen as having an emotional or a psychological cause, rather than a bodily or biological one. Women are the predominant sufferers of chronic diseases that begin with pain. But before our pain is taken seriously as a symptom of a possible disease, it first has to be validated—and believed—by a medical professional. And this pervasive aura of distrust around women’s accounts of their pain has been enfolded into medical attitudes over centuries.’15 This was the bane of Julia’s diagnosis. ‘Time went on and my symptoms progressed, I was dry heaving in the school toilets, I was struggling to walk from class to class, I was walking around school with tears streaming down my face until I got sent home. I was so unwell, this stomach ache became bladder problems, bowel issues, constant bleeding, migraines, chest pain and within a few weeks I went from being a healthy teen to being bed bound. Within a year and a half I’d had 200 GP appointments, I was getting told things like "you don't need an ultrasound you're thin enough for me to feel everything", I was being told it was IBS even when each IBS medication made me sicker, I was even told to diagnose myself from the NHS website and go back to them.’
I have experienced the pain from multiple women who have gone to their GP with reproductive-related issues. After exploring a few avenues in multiple sessions, they were told something along the lines of.. ‘well, I’m not sure what it is, but it will only become an issue when you’re trying to give birth, so come back to me when that happens’. This understandably, can leave patients concerned for their current and future health. Recognised in the Department of Health & Social Care’s Women’s Health Strategy consultation outcome, some healthcare professionals have often dismissed women’s concerns as they did not feel confident in differentiating between heavy periods (which are common and without cause for concern for many women), versus heavy periods that are indicative of other conditions such as endometriosis, fibroids, polycystic ovary syndrome, and pelvic inflammatory disease16. As women have experienced the toils of menstruation, endometriosis and other reproductive issues for as long as mankind has existed, we must start to demand this medical progression. If science has progressed to the point where Osteo-odonto-keratoprosthesis exists, a procedure that can restore sight using the patient’s tooth, surely reproductive medicine should be as advanced.
Not only does medical mistreatment cause health issues, but emotional issues. Julia shared her experience with ‘severe gaslighting’. From the offset, Julia had matched her symptoms with each endo symptom listed online, and discovered her father’s twin sister was diagnosed with endo after a C-section procedure years prior. ‘I fought for a gynaecology referral, I was told if I wasn't peeing, pooping and coughing up blood it couldn't be endo, at this point I had learnt about endo and knew this was entirely false, so I asked for a second opinion. During this time I also saw an endometriosis specialist privately as I'd lost hope in the NHS- a few months and an MRI later they had found signs of endometriosis behind my uterus and uterosacral ligaments- I thought I had answers. I was then referred to a specialist on the NHS.’ Despite this man being a specialist, preparing to perform a laparoscopy to excise and remove Julia’s endometriosis. This specialist answered all of the pre-operative questions ‘perfectly’, promising to check from Julia’s diaphragm to her abdomen and pelvis. ‘I thought I'd finally have relief’. Instead, however, her surgery on October of 2021, was instead a ‘nightmare’. ‘I went into the theatre, as I woke up in the recovery room I felt only two incisions on my abdomen not three like we discussed, I knew something had gone wrong. When I returned to the ward I spoke to my surgeon. He told me "he knew he wouldn't find anything because I had symptoms whilst on the pill", he told me I was perfectly healthy and that my fertility is fine. I was so shocked that I couldn't even cry, to have a man who previously assured me he'd cut out all my endometriosis which he agreed I must've had, to tell me I’m perfectly healthy, I was just speechless. An hour after I woke up I was completely discharged from gynaecology and told to return to my GP if I had any more issues. I did everything you're supposed to do to get an endo diagnosis, I had surgery with a BSGE specialist, not a general gynaecologist, I was supposed to be in good hands. Later my report stated that I had been overdosed on a gram of paracetamol as no one informed me what medication I was given, I wasn't given compression socks despite being told I need them as I am on the pill and have increased risk of clots, he had also found discoloration in my pelvis (a potential symptom of Endometriosis) and didn't biopsy it. I didn't even get a follow up, I was back at square one. A year later, I can't get seen by a gynaecologist as all my documents state I don't have any gynaecological problems but I still believe I have endo as it rarely shows on scans so for mine to show is significant. My symptoms have continued to worsen but I am just having to manage on my own for now.’
‘I am happy that this problem is at least being discussed, the proposed changes sound like a step in the right direction but I am not convinced any actual change will come from it. Most doctors in the NHS don't even know the word endometriosis and as you can see from my experience even "specialists" cannot be trusted to actually know what they're doing. I do think that misinformation is one of the main things creating these problems but also overall misunderstanding from doctors. The gaslighting I have experienced from NHS doctors will stick with me forever, I was made to question my own sanity because according to doctors any female related pain is imaginary. This gaslighting is ingrained in so many medical professionals and I don’t think it’ll be an easy fix, even if these doctors become more educated it doesn't mean they will actively try to listen to their female patients. It would take a major reform for the system to be more understanding of female related problems. Even specialists in this country don't have the knowledge they should have on these issues, so who will train these doctors? If they teach their incorrect knowledge to other doctors we will not see any positive change. I want to think positively about the proposed changes but I don't have very much hope that it'll bring much change specifically in regards to endometriosis.’
Following the Department of Health & Social Care’s Women’s Health Strategy consultation outcome, where it was found 84% of women felt there had been times where their GP did not listen to them, I asked Julia if she felt supported by her local GP or healthcare services. ‘Absolutely not. I put off seeing a doctor for as long as possible because I know I will be met with gaslighting and my problems will be belittled. At times I would prefer to struggle alone than open up to a doctor just to be told it's nothing. I have had scenarios where I'd be throwing up and passing out during bowel movements and even then I refused to contact a doctor because I didn't want to just be told that I'm suffering from anxiety’. Julia feels her symptoms have never been taken seriously or investigated properly. Often, Julia states, she leaves appointments in tears feeling she hasn’t received the care needed. ‘I don't trust medical professionals, even when I have abnormal test results they will try to twist them to be "normal enough" for them to ignore them and it's a lot to take mentally. I end up leaving most doctor’s appointments feeling even worse than I did before and that's not how the healthcare system should work. I have to go to extreme lengths to prepare for appointments in hopes that I don't get dismissed.’
From Julia’s account, we can see a very serious case in which the health care system has failed a young woman. Why is this the case? The Minister for Women’s Health. Maria Caulfield said: "For generations, women have lived in a healthcare system primarily designed by men, for men. We are committed to tackling the gender health gap, and the publication of our strategy later this year will mark a significant step forward."17. Understandably, this strategy has offered a lot of hope to some, while being met with similar levels of criticism. As to whether this strategy will be supported by the necessary funding and planning to bring in these positive changes will become evident through time. However, for now, many patients feel alone and ignored by their GPs, something that must change.
Thank you so much Julia for sharing your story! If you too have suffered from a similar story, and perhaps felt solitude in her words, you can check her out on Instagram @endometriosis_awareness_page
Written by Katie Wills