Interview with Saschan Fearon-Josephs - Founder of Womb Room - A social enterprise which supports women, who have reproductive health problems from endometriosis to infertility and everything in between. They empower women to understand their bodies, grow their community of support and proactively manage their health.
This year they launched #REALTALK event series to provide women with spaces for open, honest and unapologetic conversation about women's bodies and lived experiences, to help break down the barriers to discussing topics we're often discouraged from exploring in both public and private spaces.
Moody wanted to share more about how and where this incredible support network came from!
Q - We always ask when you feel low, what is the music you play to pull yourself out of it?
A- I really love Lizzo right now her song Good As Hell is my pick me up tune of the moment but old school garage is usually my go to!
Q Your story is one of true self-discovery and tell us where this story starts:
A- I struggled with the pill for a short while and in December 2010 I decided to have a Mirena Coil fitted, this led to me getting Pelvic Inflammatory Disease, I gained over a stone in water weight the first week I had the coil in and it rapidly grew worse from there. I was in excruciating pain and my weight was increasingly uncontrollably. I had to wait a month before I could get the coil removed as no doctor I saw would remove due to fear of perforation of my womb. I expected that after having the coil removed my body and hormones would return to their normal state but that didn't happen. My pain worsened and my weight gain increased, eventually I was sent for a pelvic ultrasound and told that I had a fluid filled cyst growing on my right ovary which measured 19cmx21cmx22cm.
Q What were the next medical steps that you went through?
A- I was scheduled to have surgery in July 2011 in Liverpool to drain the cysts, but by March I had stopped attending lectures as I was in so much pain. I was forced to suspend my studies. I was frequently in A & E or walk in centres due to the pain and the cyst continued growing at an uncontrollable rate. Eventually I was schedule to emergency surgery as the cyst was beginning to tort on the ovary which can be life threatening. Due to the size of the cyst if it ruptured I would die of septicaemia. In the end I made an appointment with a private consultant, who scheduled my surgery for the following Wednesday. Initially my mum thought we'd have to re-mortgage the house to pay for the surgery which was quoted as starting at 25K but fortunately we were in the UK and my consultant also worked for the NHS (God bless the NHS!).
Q What happened post this surgery?
I awoke from surgery to find I had lost my right ovary and fallopian tube as the cysts had grown so big it had wrapped the fallopian tube around itself and completely destroyed it. I was discharged from the hospital a week later and told to come back in 6 month’s time for a check-up to ensure my dermoid cyst hadn't grown back.
Q- This story is already one of heroism and grit, but did you have further complications?
3 years later in 2014 I underwent surgery again where I was diagnosed with stage 2 Endometriosis and discharged with a leaflet and told to 'live a good and healthy life'. In 2015 I was then diagnosed with Uterine Fibroids, Uterine polyps and suspected Adenomyosis and told that I would probably be unable to conceive naturally by the time I reached 27. In March this year I underwent another laparoscopy as my endo had become to disruptive to my quality of life and was beginning to cause pain so crippling I couldn't walk some days and I was having problems with my continence. The laparoscopy revealed that my endo had spread to my bladder, bowels and uterus and was now stage 4 so I had further surgery in May to excise it.
This ongoing journey reaffirms the lack of support that women are receiving and, the lack of education and the urgent need for more service development for those affected by reproductive diseases and their impacts.
Q What have been some of the hardest impacts from this journey?
- I've lost my job due to my health conditions. I was forced to leave my job 2 months after returning to work following my surgery and I've met other women who have been faced with the same situation.
What are your 3 top tips and advice for women:
LISTEN TO YOUR BODY- take the time to learn and understand YOUR body. Learn your limits, explore how it functions, what triggers you have for different symptoms.
BE PERSISTENT- get it checked out but also be prepared to push for the treatment or investigation you want. Research your options ask others in online communities for advice because a lot of women aren't taken seriously be proactive and don't be afraid to question
ASK FOR HELP- It's lonely and exhausting some days but don't feel ashamed of asking for help and support
Where should women go to seek advice and insight:
Facebook groups are great and very supportive. Nancy’s Nook is a great Facebook group for finding clinicians who specialise in endometriosis treatment and the community there is really friendly
https://www.facebook.com/groups/418136991574617/
Find out more about Fibroids and attend meet up’s: http://www.guysandstthomas.nhs.uk/resources/patient-information/gynaecology/Fibroids.pdf There is a great one that happens regularly at Guy & St Thomas’s hospital in London
Look for a local Endocrine centre, for example there is the London Endocrine Centre: http://www.londonendocrinecentre.co.uk/
Sharing is caring, so follow the Womb Room on Social
@thewombroom
Also sign up to hear more about their up and coming global events, digital tools and community www.thewombroom.co.uk
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