CN: Chronic illness
Puberty, Periods and Pain was an online event held on the 16th of November as part of the Oh My Ovaries series hosted by the Cambridge Femtech Society in collaboration with Cambridge Reproduction. This is a short review of the event written by a member of the Cambridge Femtech Society in attendance.
For an event on a topic of such personal and political nature, Puberty, Periods and Pain could not have had the privilege of a more passionate and articulate opening speaker than Women’s Health Advocate and Campaigner Jen Moore. I highly recommend visiting Jen on her social media, which you can find here. She shared her personal story of living with endometriosis and adenomyosis, tracing the difficulties she faced at various stages of her experience with the condition. Endometriosis is a painful, chronic condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes. Adenomyosis is a condition that causes the womb’s lining to bury into its muscular wall, which can lead to heavy periods with severe pain and bloating. Jen’s story was a powerful and emotive narrative in its own right, made even more impactful by her articulation of two key issues she believes need to be addressed.
Jen suggests that the two biggest issues for women living with endometriosis or adenomyosis are getting a timely and appropriate diagnosis, and receiving an appropriate standard of care. On the former, taboos around female pain and menstrual bleeding are culprits for a lack of education around reproductive disorders, which should be taking place in school, at the ages where individuals begin to menstruate. Conversations should be happening between women such that knowledge is collectively created and shared. This collective knowledge-making is particularly important because many of these symptoms are embodied – pain cannot be easily “seen” or quantitatively communicated.
“One of the biggest lies in history is that we should be suffering for a quarter of each month.” – Jen Moore
The other burning issue that needs to be addressed is the standard of care. Jen recounted years of interactions with health care professionals, where there simply was not the level of expertise, and at times, neither the compassion to recognise that her symptoms presented as a disease that had to be treated. Systemic doubt and dismissal by the medical institution about women’s pain has been well-documented in sociological and anthropological literature (for example see Hoffmann, 2001[i]). Jen’s story reflected this pattern of discrimination, and in addition, illustrated a multitude of other problems with the experience of care, including the prescription of hormonal drugs with false promises, and the struggle with ineffective surgery.
“I was put on a hormonal drug that suppressed and helped with some of my symptoms, but it allowed my disease to continue spreading.” – Jen Moore
There is clearly a lot of work to be done to improve the state of endometriosis and adenomyosis care in the UK. What I particularly appreciated about Jen’s speech were the strong calls to action. “We should make a fuss,” said Jen. The number one priority is funding. We need to stop treating women’s health as a niche and start to invest in it; this involves education and training for healthcare professions. Furthermore, women with endometriosis need to be consulted in the design of these funding strategies. In addition to this, we need to change the social norms around painful periods – just because it is common does not make it normal. “Distinguishing between normal and abnormal pain is something we can achieve only through conversation and solidarity,”Jen said.
Our second speaker, Claudia Chisari, fully embodied the “femtech” ideal as a female scientist-cum-entrepreneur. Claudia is a researcher examining biopsychosocial mechanisms of pain in women with Vulvodynia; she is also the CEO and Founder of Femspace, the world’s first platform for the evidence-based management of pelvic pain.
As Claudia described, vulvodynia is defined as persistent and unexplained pain in the vulva, a condition with a prevalence rate of 10% – 28% globally. Shockingly, given the high prevalence, it was only in 2015 that the first evidence-based diagnosis of vulvodynia was made. It is not implausible to imagine how the systemic discrimination against female pain might have contributed, at least in part, to the very recent creation of this disease category/ nomenclature. And yet even today, “diagnosis is an issue because, for example, people still think it is normal for women to have pain during sex”, says Claudia. Just as in the case of endometriosis, cultural norms and stigma play a part in the experience of the disease and the journey to diagnosis and treatment.
“Current treatment is very mind-or-body dualistic. Women are either given psychological treatment like psychosexual counselling, or medicated with drugs. A multidisciplinary treatment is necessary.” – Claudia Chisari
Having completed the first ever PhD on the topic of vulvodynia, Claudia is very much at the frontiers of research around unexplained female pain. Her specialism in the BioPsychoSocial (BPS) model of pain is also particularly interesting as it contributes a holistic perspective to more traditional biomedical and purely somatic approaches to pain management (see Claudia’s work here).
Claudia was incisive in pointing out that for under-researched fields like vulvodynia, the investment in research should operate alongside building and designing solutions for women who are suffering here and now.
In the same vein of a solution-oriented approach to women’s health, our next speaker was Em Radytė, Co-Founder and CEO of Samphire Neuroscience. Samphire are the creators of the Samphire Headband, a wearable neurotechnology medical device to deliver mood and pain relief to women with premenstrual syndrome (PMS), premenstrual dysphoric disorder (PMDD) and dysmenorrhea.
“A woman with PMDD is neurologically similar to someone who is depressed. But the clinical diagnosis for depression requires symptoms occurring for at least 2 weeks consecutively while PMDD happens for one week every month.” – Em Radytė
PMDD is a severe form of PMS, involving psychosomatic symptoms like irritability, anxiety and fatigue. As Em points out, the cognitive aspects of PMDD parallel much of the literature on depression. However, while depression has progressed somewhat in gaining consensus around diagnostic criteria, PMS and PMDD has been comparatively slow to gain any consensus, in part because symptoms differ greatly between women. However, despite the lag in research, Em and Samphire Neuroscience are taking a proactive solution-oriented approach to these menstrual conditions.
For many women, drugs like pain-killers, hormonal contraceptives and antidepressants are the only options for relief provided by medical institutions. While these drugs may help some women, others may not find adequate relief, or may be concerned about side effects. The femtech marketplace plays an important role in offering consumers options beyond NHS-provided care.
“Samphire allows you not to hide under the guise of contraceptives. You can continue to have your periods but the pain is made more tolerable.” – Em Radytė
While Samphire brings a novel neuromodulation technique to menstruation-related problems, Em is careful to position her product as one solution among many, and one that treats symptoms rather than the underlying condition. That is to say, the headband addresses the mental and social effects of these menstrual conditions, rather than their underlying cause. But as long as the exact causes of these conditions are yet to be fully understood (and perhaps even after causality has been established), we need innovative solutions that maximise relief, minimise side effects and prioritise the user above all else.
To me, the lively engagement both by the speakers and by participants in the chat forum illustrates a kind of urgent knowledge-making around women’s health that women desire to see and participate in.
As Jen said, and as we aim to do at the Cambridge Femtech Society, “we need to create a cultural shift so that people at the top will hear us […] Having diversity in voices – this means patients, scientists, doctors and researchers – is important to reduce blind spots.”
Do join us for future events, including more events in our Oh My Ovaries series, where we facilitate discussion around health and health technologies across the female lifecycle.
Feature image credit: Pink Bits on Pinterest
[i] Hoffmann D. E., Tarzian A. J. The girl who cried pain: a bias against women in the treatment of pain. Journal of Law, Medicine & Ethics. 2001;28(4):13–27. doi: 10.1111/j.1748-720x.2001.tb00037.x.
Leave a Reply