Guest post by Tanya Patel, founder of online maternity and breastfeeding brand Lily and Ribbon
When I was 14 years old, my period became something that I just couldn’t cope with. Being a teenager, I didn’t realise it wasn’t normal for my period pain to be incredibly severe; culminating in me fainting in public because the pain was just overwhelming. Not only did I struggle to cope with the pain, this massively impacted my confidence.
It got to the point where I was too embarrassed to leave the house in case I fainted when out and about in front of everyone! As I grew up, I almost got used to fainting; fainting everywhere from the middle of shopping centres to an award ceremony!
Although I know my symptoms started early in life, my diagnosis actually took much longer. In total, it took me 7 years to finally realise what I was suffering with was actually endometriosis. I yo-yo’d between different diagnoses throughout these years. One doctor was convinced I actually had migraines due to the fact my pain would make me vomit. Another assumed the fainting I went through must be a form of epilepsy, or perhaps even something was wrong with my heart.
I bounced between doctors and appointments and was given everything from an ECG to a brain scan to try and get a formal diagnosis of these symptoms. They all came back clear, yet no doctor ever considered my symptoms were actually gynaecological ones.
Finally, many years later, I saw a doctor who managed to diagnose me with endometriosis via a laparoscopy. My experience is not uncommon: for most women, actually getting a diagnosis is half the battle. That’s why, on average, it takes women 8 years to be diagnosed with endo.
BAME women are likely to face even more barriers to diagnosis. A NICE report highlighted that in BAME groups there are cultural barriers that may prevent women from talking about and accessing healthcare services for endometriosis. That’s certainly true in my own experience; I never shared what I was going through with many people. I personally feel there is a taboo around gynaecological health in Asian culture. In my community we just didn’t talk about periods and what happens to your body as you grow up, so I had nobody to tell me that what I was going through actually wasn’t normal.
This year, I decided to talk about my journey on my business’s Instagram account (@lilyandribbonmaternity), which then led to me being a guest on the BBC Asian Network for endometriosis month. Afterwards, I had many messages from women who had the same symptoms but just felt embarrassed to talk about it.
One of those people was actually related to me. She had been fighting with her endo symptoms for the last six years but never thought to share it with me. Another really good friend has gone back to her GP, to ask for a laparoscopy, after hearing my interview. I am really passionate about raising awareness and just wonder if I might have got my own diagnosis earlier if I had told more people what I was going through.
Another frustrating aspect of endometriosis in the medical community is that women are often told they need to have their children earlier, which came as a massive shock to me. I eventually went on to have my first son Zak when I was 28, which was much earlier in my life-plan than I’d anticipated. During pregnancy itself, I actually felt amazing; I loved being pregnant as my endometriosis symptoms were not painful at all. However, doctors didn’t warn me that, when I was postpartum and breastfeeding, my symptoms would come back with a vengeance! So pregnancy was certainly not a permanent solution.
Despite my endometriosis, I have had a successful career in retail and then began my own maternity business after my son was born, which I now run full-time. I’d be lying if I said endometriosis isn’t at the back of my mind when I’m offered opportunities. However, the team I employ knows I have endometriosis, so they understand when I’m having bad days.
For anyone suspecting they might have endometriosis, I’d urge you to check out the charity Endometriosis UK – a great charity for those looking for support, who helped me to navigate this illness. Also if you do one thing: put yourself first when it comes to your options and treatments. If you need to have a few hours in bed due to a painful period, then do it!
Finding a supportive employer who understood this really helped me come to terms with juggling a career with the condition. But realising it is with you for life, and coming up with your own strategies for self-care and pain management, is crucial.