Endometriosis: How To Diagnose, Manage & Live With It

By Rebekah Lloyd, Women’s Health Advocate & Founder of This Independent Life

Rebekah Lloyd worked for the majority of her career in healthcare, from scientific research and the NHS, to pharmaceuticals, and communications. She was shocked to learn that despite endometriosis affecting 1 in 10 individuals who menstruate, the cause is still unknown. The statistics are similar to diabetes, which has a multitude of solutions and innovations available or in development. Yet for endometriosis there is no definite understanding of the physiology, no cure, and treatment usually involves symptom management, with recurrence unfortunately being very common.
Access to early diagnosis and effective treatment of endometriosis is important, however currently confirmatory diagnosis is only available through laparoscopic surgery, and it takes on average 7-10 years to get diagnosed.
In this article, Rebekah shares her experience of endometriosis and gives advice on how to get a diagnosis, how to manage your symptoms, and how to live with it.

What is endometriosiS?

Endometriosis is a chronic disease primarily associated with severe, life-impacting pain during your period as well as throughout the month. Sexual intercourse, bowel movements and/or urination, chronic pelvic pain, abdominal bloating, nausea, fatigue, depression, anxiety, and infertility are all other symptoms of this condition whose cause is still unknown.
Yet more evidence and research is highlighting that despite being thought of as a gynaecological condition, it’s more a full-body condition with a huge variety of contributing factors and symptoms. For example, endometriosis can also be found in the lungs.
I personally underwent a long and arduous 10 year journey to an endometriosis diagnosis and surgery, after repeated dismissals and misdiagnoses and being turned away time and time again with stronger painkillers. I started speaking with other women and realised that unfortunately the current reality is this: when it comes to endometriosis and women's health generally, women are suffering in silence, even dying due to lack of support, and it's sad to say that the situation is now an epidemic.

symptoms & diagnosis of endometriosis

Before I was diagnosed, to everyone else I was successful and happy. But then I had a breakdown. I had been slowly falling into a dark pit of despair, with my mental and physical health deteriorating, and I refused to accept that I might need help.

The cycle of anticipating and experiencing pain and other symptoms month after month was exhausting, and I realised the impact it was having on my life on a wider scale, both personally and professionally. Being in pain every day is not ok. Having to pretend everything’s fine at work, and having to lead and participate in meetings with a boiling hot wheat bag too hot to be placed on your skin, but doing it anyway because painkillers aren’t even taking the edge off, is not ok.

Bleeding every time you have sex with your partner is not ok. Being told that “it’s not that bad” is not ok. It took my partner to say to me one day, when I was crying and unable to move from the pain, that enough was enough. Without his encouragement, I may never have plucked up the courage again to go to the doctor and insist on a referral to a specialist. Without that nudge, I may have continued to normalise the pain and may never have got a diagnosis.

you are not alone

During this 10 year journey of pain, I came to realise that I wasn’t alone. Along the way, I spoke to many women, in different countries and cultures, who felt the same way. Our problems are multifaceted, and our stories are multilayered. One area of our life isn’t independent of the others, it’s symbiotic.

A huge contributor to my breakdown, and subsequent realisation of the fact, was endometriosis. There is a lot of focus placed on the physical impact of endometriosis, however, the emotional and psychological toll that it can have is arguably even harder.

I know that without the care and support of my husband throughout my journey and surgical recovery, I could not have gotten through the last few years. From bringing me ginger tea and painkillers to simply sitting with me when I was in too much pain to talk, just knowing that someone was there to help me through the pain helped it be a less isolating experience. That is why I am so passionate about supporting others now through This Independent Life.

Take an AKA Approach - Awareness, Knowledge, Action!

If I could sum up how to manage and live with endometriosis and any health challenges, it would be my tried and tested ‘AKA framework’ - awareness, knowledge, action. You need to be aware of an issue, be it with your health or in your life generally, be educated on all aspects of it because knowledge is power, and finally take action to make positive change.

Endometriosis is a heterogeneous condition - it affects everyone differently - and without a cure I believe it’s about taking a systematic trial and error approach to find what works for you. What works for 1 person won’t necessarily work for another, and that’s ok. But before getting to that point it’s important to get a diagnosis so that you know what you’re working with definitively, and importantly so you can find a community to support you on your journey.

what to do next

Below are my top tips for how to secure a diagnosis and start looking for treatment options if you suspect you have endometriosis.

Track your symptoms - if you bring hard evidence of your symptoms over a period of time it's harder for people to dismiss you and your experience, so I always tell people to track their symptoms because then you can't be told it's all in your head. You have data and evidence.
Get a second opinion - If you're not getting help from the person that you're speaking to, try someone else. Get a second opinion from a different GP and say: “Here are my symptoms. I think it might be endometriosis. I’d like to be referred to a specialist.” Help them telp you.
Bring someone with you - it can be very emotional and challenging having these types of appointments so if possible take someone with you to help answer questions and take notes.
Ask questions and take notes - to make the most of the short time slot come prepared with all of your health questions and be sure to take notes so you can reflect back after and make sure to follow up on any referrals or next steps.
Call for cancellations - waiting lists for endometriosis can be very long, often years, but there are sometimes cancellations that free up appointments and there isn't always the admin support to fill them. It's not guaranteed but if you call you can sometimes get an earlier slot and appointment which can make a big difference to getting closer to the support you need.
Ask for a referral to a BSGE specialist centre - these are endometriosis specialist centres around the country. You can find your closest centre by entering your postcode and then you can ask to be referred to them vs a general gynaecologist if you suspect you have endometriosis. If you have a diagnosis already you can be treated by your nearest specialists.
Ask for a copy of your medical records - in the UK every NHS trust operates independently and you're now allowed access to your medical notes so ask for a copy to bring with you to appointments, including any tests or surgical notes and images.
Join a community - finding a community and joining support groups and events for help, advice and to learn about different treatment options and organisations working to advance endometriosis can be life changing. I host a variety of events at This Independent Life, including our upcoming Future of Endometriosis conference happening on 9th March in London and online.

TREATMENT OPTIONS

As of today there is no cure and there are limited treatment options for people with endometriosis, but there is hope in the innovations happening in the space and there are a variety of options that you can try to get your condition under control.

I am an expert by experience and through my professional and personal education, however I am not a doctor or practitioner, so please ensure that you are speaking with a healthcare professional about your situation to get the support and advice you need.

See below some of the ways that I personally manage my chronic pain and symptoms that do not include surgery, contraceptives or medications:

Lavender wheat bag - heat can be a very effective for pain relief and I've used my wheat bag that my mum (who's a practice nurse) got me years ago that also includes lavender to help with relaxation. I pop mine in the microwave for 2 mins and wrap it around my belly and it helps to ease the pain, or if I'm having bad back pain I can use it there too.
Heat pads - similar to the wheat bag I use heat pads that go directly onto my skin. You can leave them on for hours - they’ll stay on if you go for a walk and during your sleep.
Cooling pads - the opposite of the above, cooling can also help ease the heat sensation that comes from the pain of a flare up.
TENS machines - if my flare ups are really bad I'll occasionally use my TENS machine. There are some on the market to purchase and you can also get them from the NHS that have a higher intensity.
Breathwork - I have started to use breathwork as a way to 'breathe out' the pain during a flare up. The pain can cause our bodies, including the pelvic region, to tense up and learning to use breathing to try to relax and visualise the pain leaving my body has been very effective.
Pelvic floor physiotherapy - learning techniques from a pelvic floor physio can be a really effective way to manage flare ups and ongoing management of endometriosis.
Nutrition and teas - often during a flare up you will also get gut symptoms so I always try to have a set of teas and fresh ingredients on stand by to help calm and soothe things. One of my go-tos is fresh ginger, garlic, lemon and cayenne pepper, or a classic peppermint. Both peppermint and ginger can be helpful for nausea too which I often get.
Posture and desk set up - I noticed when I sat at my desk for too long it would trigger a flare up and pain, so I've recently started looking at how to improve my posture and desk set up as well as building in time to walk around and move. I also find that if possible having in person meetings and moving around more during the day means I get less flare ups and pain.

MENTAL HEALTH SUPPORT

There is a huge connection between mental and physical health when it comes to endometriosis that isn't spoken about enough. When it comes to the pain, and other symptoms such as bloating, we become used to being in pain and expecting flare ups during certain situations, and it becomes a vicious cycle in our minds as well as our bodies.

When I'm stressed I get a flare up almost like clockwork and I know through my own experience and that of my community that this is related to our brain and nervous system. And vice versa, having a flare up is an incredibly stressful experience, and so the cycle continues that can be hard to break.

Learning to manage my stress has been a huge factor in managing my overall pain and symptoms of endometriosis. It is hard to find tailored mental health support for endometriosis as it's not currently included in all health guidelines but you can self-refer for talking therapies in most NHS trusts around the UK for chronic health support.

don’t give up, and embrace the power of community

Endometriosis can take over your life completely, and can have a huge impact on your life and lifestyle. But it's also about trying to find ways to not let that happen. People around you want to help and don’t want to see you in pain, so being open with the people that you're comfortable with, to a degree that you're comfortable with, is important.

the future of endometriosis conference

The Future of Endometriosis Conference, by This Independent Life, takes place on 9th March in London and online. Bringing together different voices and perspectives from across the endometriosis and women's health space, you will be able to:

Hear the latest advancements in research
Understand what treatment options and support there is for people affected by endometriosis and women's health conditions
Learn from leading experts including patient advocates, healthcare professionals, academic researchers, startup founders, and more.

You can find more information and tickets here.

ABOUT THE AUTHOR:

Rebekah Lloyd
*Founder of This Independent Life*

Rebekah Lloyd is a women’s health and careers advocate, speaker and advisor, event and podcast host, and founder of This Independent Life. After experiencing burnout and chronic pain, a 10-year delayed endometriosis diagnosis, and the resulting career and financial challenges, she started This Independent Life to help all people to achieve health, wealth and fulfilment in life.

She delivers talks, events and consulting for workplaces and universities, research institutes and startups, and communities. She is a UN Women UK delegate and is dedicated to using business as a force for good. Her clients include global organisations such as Barclays, UNiDAYS, Whistles, University of Cambridge and Imperial College London.

She has been featured internationally including The Guardian and Nasdaq, and was recently invited to advise the UK Parliament Women and Equalities Committee on women’s health as a result of her work that was broadcast globally via the BBC.

Website: https://thisindependentlife.co/