Question 1. What was your journey to diagnosis?
Like a lot of women, I ignored my symptoms for a long time, chalking them up to “normal” monthly cycle symptoms.
I was working in London in a fast paced corporate role so I was leaving the house at 0630 and getting home at 1930 and barely stopping in between.
I was diagnosed with migraines 10 years ago and my pain threshold is already pretty high, so it was when I found myself sat on the floor in a hot shower throwing up from pain that I was finally triggered to speak to my doctor about my symptoms.
Having a military partner and moving 2 months prior meant this was my first exposure to this particular doctor and I was lucky that she immediately took my pain seriously and scheduled an ultrasound for me.
Unlike most of the Endo warriors out there, I have been lucky that in my journey I have only had one doctor who told me that I was overreacting or that maybe my symptoms were “just IBS”.
Unfortunately, because the symptoms of this particular illness are so varied and can be symptoms of other issues, a lot of women find it hard to be taken seriously and unfortunately if you don’t have the same doctor consistently for years it can be even more of a battle.
In total for me it took several doctors appointments over 12 months, 3 ultrasound scans and an appointment with a gynaecology consultant to finally get a referral for a laparoscopy – this is keyhole surgery and is the only way to fully diagnose Endometriosis.
Getting my diagnosis was hugely validating – as tough as it is hearing that you have an illness that can be managed but not cured, knowing finally what is causing you the pain does at least stop the “what if it’s this” game we all play and a diagnosis means that I can start to manage my symptoms & create a plan to move forwards.
How were you juggling life pre-diagnosis?
Chronic pain is exhausting, so juggling the pain with working too much meant that I literally got home and went straight to bed every evening. I didn’t have much of a social life because on weekday evenings I was too tired to function and on weekends I was either recharging or my exhaustion had triggered a migraine! Being ill doesn’t just drain you physically, mentally it is so tough as well. For me it was the guilt over feeling like I wasn’t being the best girlfriend, friend, or daughter I could be because I just didn’t have the energy. Once I began the diagnosis process I made the decision to walk away from my corporate career and go freelance because this gave me the flexibility and freedom to manage my workload around my symptoms instead of worrying about taking too many sick days!
It means that now if I have a pain flare, I don’t need to feel guilty about curling up on the sofa with a hot water bottle or simply staying in bed!
In hindsight I …
I wish I had spoken up about my battles sooner! When I finally spoke up to my friends and family about my symptoms and diagnosis journey I was overwhelmed with support!
1 in 10 women suffer from endometriosis and speaking up about my journey not only triggered friends of mine to speak to their own doctors, but other friends who were also diagnosed opened up to me about their journeys having also stayed silent about it previously. I’ve also taken the leap to talking about my diagnosis professionally; it is a big part of why I started my business and it is a huge guiding factor in how I work, so by opening up about what I am going through it allows other business owners to relate to my experience and learn from me.
If you had/have a partner, what role did they play in your journey re/post diagnosis and during treatment? Was there support available for them? Do they feel empowered or deflated from the experience? Were their employers supportive during this time? (if applicable)? Were there resources available to them during this time to support them in supporting you?
My partner has been my absolute rock throughout this journey; he encouraged me to speak to my doctors but also reminded me not to minimise my symptoms when talking about it. It is hard for him to see me in pain and feel like he cannot ‘do’ anything to help me but his support and his encouragement to prioritise my health and self care above everything else has helped me more than he realises!
We have also been so grateful for the support his workplace gave during this journey – from giving him flexible time to accompany me to scans and consultant appointments, to allowing him to come home from Kenya early so that he could look after me post surgery!
Are there any particular resources that you would recommend that you benefitted from?
The best resources I found on my journey were in the communities on Facebookand Reddit where other women shared their experiences and what works for them. It is so different for everyone and what works for one may not work for all but it’s a great place to gather ideas! It’s also a great place to shout in to the void and get validation from people who simply “get it”.
There are some excellent videos on YouTube highlighting what symptoms are abnormal & should be spoken about with a medical professional. I highly recommend everyone speak to their GP if they are worried about anything at all – this is what they are paid for!
Alex is a freelance business consultant and founder of The Business Freedom Method where she advocates for prioritising self care and a work/life balance whilst still achieving business success.