037: Living with Endometriosis with Sandra Lewin

What is Endometriosis and how does it manifest? Why is it so important to broaden the national conversation about this debilitating condition? What can you do if you think you may be a sufferer?

For an episode 18 months in the making, we’re thrilled to welcome insurance business founder and keynote speaker Sandra Lewin back to the Coffee, Calm & Connection podcast! In this episode, Sandra discusses her experience of living with Endometriosis, from years of suffering with the condition before her eventual diagnosis and lifechanging surgery. In an open, frank and inspiring conversation with Sarah Myerscough, she explains the symptoms of Endometriosis and the debilitating impact it can have on one’s daily life. Listen now to find out more about this lamentably undiscussed condition and to help us raise awareness!

 

Quote of the Episode

“I consider myself very lucky. I never knew you could live like this. [People] did not realise how much pain I used to live in. So, my story, I’d say, is very positive. But for many women it is not positive. Many women suffer in silence, [and] many women don't even know they have it. And once they do know, they have no way of getting the right treatment.”

After years of enduring the physical torment of Endometriosis without a diagnosis, when Sandra finally received surgical treatment, her life was changed irrevocably. For years she had been deprived of so many basic things many of us accept as standard, from a decent amount of uninterrupted sleep each night to being able to go about one’s day for long periods without a constant need to use the bathroom. Yet, one in ten women suffer from endometriosis, and a considerable amount of them are yet to even be diagnosed with the condition. It takes, on average, eight years before a woman is diagnosed with the condition due to its complexity, leaving so many women to suffer without any significant forms of treatment.

 

Key Takeaways

Endometriosis is where tissue similar to that within one’s womb grows in other areas of the body. It is most commonly associated with painful periods, although this can lead it to be confused with another condition, adenomyosis (when womb tissue grows outside of the womb). The condition is also often misdiagnosed as IBS, as both conditions are accompanied by digestion issues. Sufferers may also endure severe mood swings which can lead to depressive episodes, alongside fertility issues and painful intercourse.

While it is often understood only as a form of extensive period pain, it is much more than that. When you have your period, the tissue breaks down and is released through bleeding. With Endometriosis, this same tissue is trapped in other areas of the body. It also eventually breaks down and bleeds, but it has nowhere to escape. In the long term, this can create tumours and lead to cancer (although there is not yet sufficient medical evidence to explain how this transition occurs).

 

Due to its complexity and the ease with which it can be misdiagnosed, many women suffer with Endometriosis without even knowing it, or alternatively continue to suffer for extensive periods without receiving a formal diagnosis, and thus no treatment. The impact on one’s day to day life is considerable, and the dual brunt of this physical pain and the mental anguish of being denied a diagnosis is woeful. Many women suffer in silence, and therefore it is crucial that the national conversation about Endometriosis is changed, and that people become more aware about exactly what it is and how it affects those who suffer from it.

Sandra offers four key pieces of advice to those who think they may have Endometriosis:

1. Trust your body – if you are hurting in the ways described above, trust your judgement.
2. Find a community – there are plenty of endo-sisters spread across the country and globally, who share resources and support.
3. Identify the care that is most suitable for you. Every woman is different, and every woman suffers differently from this condition. The right thing for someone else might not be right for you.
4. Look for Endometriosis specialists who can offer bespoke care for this condition.

Sandra is happy for anyone who thinks they may be suffering to reach out to her for support.

 

Best Moments/Key Quotes

“The laparoscopy is important to really diagnose it. But try and look for a doctor that does the scans first to really build that picture of where it is.”

“On average, it takes eight years for a woman to be diagnosed with endometriosis. And most women, by the time they get diagnosed, are so mentally drained by this and feel like they are absolutely crazy.”

“I couldn't walk, I couldn't function, I couldn't really get out of bed. It was really tough. I was a broker, and being a broker […] is all about being on your feet and I really couldn’t. I was taking droves of painkillers but then your brain basically switches off. So, I looked to a nutritionist, and we'd done a lot of work on my nutrition because I was told I had IBS. She said, ‘There's something else,’ and she goes, ‘Have you heard of this thing, endometriosis?’”

“The first thing I always say to everyone is don't give up. Trust your body, and if it's hurting, and if it's saying to you, ‘There's something wrong’, and it’s not IBS, trust it. I know it's hard because you are in pain. And everyone is telling you, ‘You're crazy and you're not feeling that pain’. Trust your feeling; really tune in with your body.”

 

Resources

Endometriosis UK: https://www.endometriosis-uk.org/

 

About the Guest

Sandra Lewin is the founder of InsurSocial, an agency offering social media management solutions for the insurance industry.

Sandra’s LinkedIn Profile: https://uk.linkedin.com/in/sandralewin

 

About the Host

Sarah Myerscough is the Sales and Marketing Director of Boston Tullis Group and the M.D and creator of Coffee, Calm and Connection.

 

Connect with Sarah

https://www.instagram.com/coffeecalmconnection/

https://www.facebook.com/coffeecalmconnection

Coffee Calm & Connection: Overview | LinkedIn

Sarah Myerscough | LinkedIn

 

Hosted by Sarah Myerscough

DISCLAIMER

The views, thoughts and opinions expressed in this podcast belong solely to the host and guest speakers. Please conduct your own due diligence.

Website: Coffee Calm & Connection (coffeecalmconnection.org)