Centre for Maternal, Adolescent, Reproductive, and Child Health

The Womb Room: Raising Awareness of Endometriosis

By Rianna Raymond-Williams, Theme A, March Blog Editor (MSc in Reproductive and Sexual Health Research Candidate)

Endometriosis is a common condition that occurs in around 1.5 million women in the UK and 176 million women globally. This is where the tissue that behaves like the lining of the womb (endometrium) is found in other parts of the body, such as the ovaries, fallopian tubes, inside the tummy, and in or around the bladder or bowel.

Endometriosis mainly affects girls and women of childbearing age and although symptoms vary between women, what is usually common is chronic pelvic pain, which occurs during menstruation in addition to experiencing blood in urine during a period, difficulty getting pregnant, pain during or after sex, pain when using the toilet, as well as feeling sick, constipation and diarrhoea.

National Endometriosis month which took place throughout March aims to raise awareness of this condition, available support via organisation as well as initiatives that take place to normalise and encourage conversation around the topic. Here at the school there are numerous studies being conducted to understand the condition and treatment in addition to its relationship with breast and endometrial cancer, infertility, pelvic inflammatory disease and polycystic ovary syndrome.

Here are a few of the research papers featured below:

Long-term consequences of polycystic ovary syndrome: results of a 31 year follow-up study.

Endometrial thickness as a test for endometrial cancer in women with postmenopausal vaginal bleeding

Genetic overlap between endometriosis and endometrial cancer: evidence from cross-disease genetic correlation and GWAS meta-analyses

Comparison of clinical and laparascopic features of infertile women suffering from genital tuberculosis (TB) or pelvic inflammatory disease (PID) or endometriosis.

We decided to speak with Saschan Fearon- Joesph, founder of  the social enterprise The Womb Room, which aims to increase reproductive health awareness for women and girls by providing a safe space for young women with reproductive health problems to share information, learn how to manage their conditions and redefine their womanhood through focusing on reproductive well-being.

Tell us about The Womb room and why you decided to start the organisation and specifically address female reproductive health?

Saschan delivering a talk on International Women’s Day at Amnesty International (Copyright: Denyce Blackman)

In December 2010 I had a Mirena coil fitted, which caused me to develop pelvic inflammatory disease (PID). In the weeks following I struggled with rapid weight gain, excess water retention, debilitating pelvic and ovarian pain and hot flashes. After having the coil removed a month later due to two clinicians refusing to remove it and opting to prescribe antibiotics or painkillers instead due to a fear of perforation, I was told my body would go back to normal and settle down, but it didn’t.

My symptoms became progressively worse in a very short period of time and I was told I had a fluid filled cyst growing on my right ovary. Over the next few months I was refused medical treatment, subjected to unnecessary internal examinations and called a liar by some of the very people whom I was seeking help from.

After having suspended my studies at university, and being forced to move back home – in order to ensure I could get the day to day support I needed – I went to a walk in center and saw a GP who told me that I urgently needed to go back to my GP and get my surgery date moved closer as the cysts were beginning to pull on the ovary and there was a risk that it would rupture and I would die of septicemia before an ambulance would be able to reach me if my cyst ruptured.

I made an appointment to see a consultant a few days later and she performed my surgery 5 days later as an emergency operation. In total they drained just under 5 liters of fluid from the cyst which had become so big that it had wrapped the Fallopian tube around itself completely destroying it. I was 19 at the time and completely unprepared for the life changing experience I has just undergone and no concept of how my entire life from this point forward would be centered around the way in which it intersected with my reproductive health.

It took a long time to get back to a place of relative normality and in February 2014 I was diagnosed with stage 2 endometriosis on my remaining ovary and Fallopian tube. This was followed by a diagnosis of fibroids and uterine polyps in July 2015 following a visit to a fertility specialist. I underwent further surgery in March and May 2017 to remove my endometriosis, which is now stage 4, from my bladder, bowels and uterus.

I founded The Womb Room at a time when I had nowhere to turn and limited resources to help me manage my condition and the unexpected physical changes and emotional impact it was having on my life. Since then, I have gained a wonderful network of inspiring women, been supported by a wonderful team of professional contributors and redefined the direction I want the business to take.

The Womb Room has grown to surpass my initial expectations, connecting women with the knowledge and tools to redefine and reconnect with their womanhood and I’m excited to be going into the next stage in our development working to provide open spaces where we can connect, share and learn with eachother. The original mission was born out of a need to work through my own lived experience but also educate and empower others along the way and that’s something we’ve stayed true to throughout our events, online service provision (which is currently being redeveloped) and our workshops and training.

We can’t take a break from our bodies, they carry us everywhere there is no part of our lived existence with which they do not intersect and most of us will spend a significant part of our life at work so it’s essential that we’re supported in these environments.

Can you name any organisations that do similar work to yourself, but also what makes you different?

There are several women’s health charities who address condition specific health problems such as Eve Appeal, the gynecological cancer charity, Verity who focus on awareness of Polycystic Ovary Syndrome (PCOS) and there’s also Cysters who are a non-profit support group for women with reproductive health problems based in Birmingham. I think we differ from these organisations in that we don’t focus solely on research, although research into reproductive and menstrual well-being issues is essential in improving our understanding and treatment of them, what I feel is widely lacking is practical support and access to resources.

This will go towards helping women and menstruators struggling to manage their reproductive well-being and their bodies with tangible resources and services. I’m interested in how we create a financially sustainable business model which enables us to employ women, empower women and support women, girls and menstruators practically through counselling, job security, access to therapies and resources which provide them informed consent. I’m also really interested in encouraging women to recognise the power and value in sharing their reproductive experiences with one another and how we can use those stories to mobilise and effect change to create a more equitable society for women and menstruators.

Attendees of Real Talk Reproductive Health Awareness event held in London (Copyright : Annie Poe)

 

Tell us about what you have achieved so far on your journey, what else you are working on at the moment to address female reproductive health and why this is important ?

So far over 20,000 people from around the world have accessed our website looking for information. We’ve delivered reproductive well-being education to over 300 girls in schools across London and our #REALTALK event series has connected 119 women and menstruators with professionals from across the reproductive wellbeing sector to explore, learn and share issues surrounding our reproductive well-being from contraceptives to the intersection of mental and emotional well-being.

This year we’re teaming up with other organisations to help increase the conversation around different reproductive wellbeing issues such as Pre-Menstrual Dysphoric Disorder (PMDD), PCOS, endometriosis, Fibroids and we’ll also be looking at abortion, sex and pleasure. We’re currently in the process of re-branding as we want to ensure that moving forward we’re more inclusive and are actively working towards representing the experiences and providing support for marginalised groups such as prisoners, trans men, survivors of domestic violence and women of colour.

We’re also finalising a new offer for corporate companies in an attempt to improve reproductive equity for women in the workplace and ensure businesses are committed to understanding and supporting the needs of their staff. We’re socialised to believe that these problems are personal and therefore should be assigned to certain spheres of our lives, but we can’t take a break from our bodies, they carry us everywhere there is no part of our lived existence with which they do not intersect and most of us will spend a significant part of our lives at work so it’s essential that we’re supported in these environments.

I’m most proud of having gone from just me as a solo-preneur 6 months ago, to having a marketing intern and the support of a strong advisory panel and having achieved all of this whilst struggling with chronic pain and inflammation everyday due to my stage 4 endometriosis diagnosis which is both painfully debilitating and fatiguing.

We’re always looking for support from panelists for events, to ambassadors, fundraisers, artists, journalists, literally anyone who can help us to raise the profile of the work we’re doing we’d love to hear from you.

What do you feel needs to change to help address female reproductive health in the mainstream and what do you suggest should be put in place?

SO many things! But I think starting with using space and the power of shared experience to change the narrative around women’s well-being, our bodies and the construction of womanhood is essential in helping to break down a lot of the shame, stigma and taboo but also to empower us to be able to work through the mental and emotional peaks and troughs we face following diagnosis, treatment or difficulty conceiving. Most women I speak with experience some form of mini ‘identity crisis’ questioning who they are, what womanhood really means and looks like for them and navigating how to manage relationships with friends, family and colleagues effectively whilst attempting to manage the intersections of their well-being with other parts of their life.

I also think we really need to make education and informed consent a priority to ensure that when we’re accessing health services we understand our rights and responsibilities but that we’re also armed with all of the information that we need to truly make a fully informed decision about what the long term impacts of different treatment options are and how these can potentially be managed. A lot of us become experts by experience because we have quickly learnt that we have to educate ourselves, in order to explore the best options, but even finding accurate up to date research or straight forward answers to some questions can be difficult, as there are so many messages online and not a lot of quality control.

Education shouldn’t just be targeted at those struggling with their reproductive health, it needs to be available to organisations, service providers etc. Essentially, everywhere because our lives are not two dimensional.  Greater awareness and understanding will enable workplaces to be structured in more equitable ways and ensure support is available which will enable women to fulfill their economic potential whilst maintaining a decent quality of life.

It will take a genuine commitment from everybody to ensure we can do this effectively

Participants explore reproductive organs through art at a Real Talk event. (Copyright : Annie Poe)

Where do you see the Womb Room in the next 5 years and how can people get involved in the work that you’re doing ?

I’m really committed to changing the world for women and menstruators starting with the work place.

I want to be deliver our programs in businesses across the world encouraging people to understand their employment rights better and also to ensure that informed consent with regards to research participation, medical and hormonal treatment options, contraindications and how to manage them is encouraged and accessible to all through events, multimedia content and online service provision. Whatever we work on over the coming years we’re committed to using our work to invest in educating and empowering future generations of young women and making better mental health support available but also ensuring that we build a team with lived experience, to lead by example and provide a truly equitable work place built to foster innovation and meet their needs.

We’re always looking for support from panelists for events, to ambassadors, fundraisers, artists, journalists, literally anyone who can help us to raise the profile of the work we’re doing we’d love to hear from you.

We’re a small organisation so we’re grateful to everyone who wants to get involved and give their time to support to what we’re building.

You can contact us on and Follow us on Instagram, Twitter and Facebook

You can now listen to Saschan via The Vulnerable Podcast were she tells her story of Living with Endometriosis.

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