Articles / Endometriosis understanding and awareness is vital

Endometriosis understanding and awareness is vital

11.03.2020 5 Minutes
Endometriosis understanding and awareness is vital
Endometriosis understanding and awareness is vital

March is endometriosis awareness month so Hello Cup co-founder Robyn McLean shares her story and journey with endometriosis.  

One of the most amazing things that has happened since starting Hello Cup is the realisation that I’m not alone when it comes to my current battle with endometriosis. 

Periods can be tough and often there’s an underlying reason but for years (actually decades) I didn’t really know what that was. 

When I was younger I never understood it when friends found their periods no big deal; why they didn’t have the same need to pop countless Panadol to control menstrual cramps just to be able to function.

I hated dealing with my period at school, constantly worrying that if the teacher didn’t stop yabbering in time I’d end up with an unwanted red design feature on the back of my skirt. 

I saw my doctor. I don’t remember her being overly concerned. Her solution was to put me on the pill. It did help. I stayed on the pill for most of my teens and 20s. The times I went off the pill, I got hit with the full force of what I put down to ‘bad periods’. I remember a weekend away on Waiheke Island with friends when I could hardly move because the pain was so nauseating. They frolicked on the beach while I stood under a nearby tree vomiting. I went back on the pill soon after.

In those days the pain would typically only be there as part of my period. It would last for two or three excruciating days and then the remaining days were heavy but pain-free.

Endometriosis understanding and awareness is vital

I travelled and moved cities several times over the years and every time I went to a new doctor and went through my medical history, I’d always tell them about my bad periods. Pain, nausea, headaches, extreme tiredness. No one ever suggested endometriosis that I can remember.

In more recent years as my complaints have become more vocal, I’ve had the unfortunate pleasure of having more dildo-esque ‘internal scan’ wands waved around inside my vag than I can remember.  I never know what to say when they ask if I want to insert it myself as they roll a condom onto the probe non-chalantly. I assume it’s some ridiculous mandatory health and safety question requirement but the question sounds plain perverse. ‘Sure I’d love to show you my preferred dildo insertion method while you sit there and watch'. Not awkward or undignified at all.

Endometriosis understanding and awareness is vital

With everything else ruled out, a diagnosis of endometriosis was given to me about four years ago. My gynaecologist has suggested I have a mirina inserted or laproscopic surgery. Neither are a cure. They may help, they may not. I know from the multiple endo-related instagram accounts I follow, success is definitely very hit and miss. 

Over the last year, my pain has gotten worse than ever. It is now not something that only occurs around my periods, I have a constant pain in my right side. Sometimes on my left too but always on my right. Somedays it is crippling and makes me want to vomit. Other days it’s just dull ache that I’ve learnt to ignore. It’s hard to get out of bed sometimes and frequently leaves me in private tears of frustration and feeling depressed. Invisible diseases are cruel because you look ‘fine’ but no one can see the fact it feels like a devil is prodding your insides with a hot poker. 

A few weeks ago I ended up at the Emergency Department in the early hours of the morning because the pain was so intense. The staff were amazing and gave me IV pain relief. The hospital gynocologist told me to never stop taking pain relief. I asked her opinion on laparoscopic surgery. She personally didn’t think it was the answer. “It’s still a big operation and for most it’s not a cure.” 

Currently when pain strikes the best way to manage it for me is lie on my side with a pillow between my legs. It’s a highly glamorous look. 

Given that my own periods have had such an impact on my life, sometimes it seems crazy that I’ve ended up in the ‘period business’ but then maybe it’s not crazy at all. Maybe it’s fate. Hello Cups have helped me deal with my heavy flow by giving me a bit more time between changes (cups hold more than tampons). But without doubt the most amazing thing that has resulted from starting Hello Cup is having my eyes opened to how many suffer from endometriosis and how differently it manifests itself. We have Hello Cup users who bleed more days per month than not.  We have customers who are unable to work, to have sex with their partners, to eat certain foods. 

At one point we toyed with the idea of using the slogan ‘Making Periods Great Again’ for Hello Cup (partly because we knew Donald Trump, if he ever became aware of it, would hate his much-touted partyline being appropriated for a menstrual cup). We didn’t use it because for most people with periods, they are not something to be, and likely never will be something they’d describe as being ‘great’.

A couple of weeks ago the New Zealand Government released the first ever guide to early endometriosis detection. One in 10 women will get endometriosis but it often takes 10 years for a diagnosis. Mine took over 30 years. The aim of the newly launched guidelines is to help GPs and other health professionals diagnose endometriosis earlier so intervention and management options can found sooner rather than later. With no cure, it’s still a tricky thing to navigate, but a diagnosis goes a long way in terms of knowing that it’s not all in your head.

I hope you haven’t read this thinking I have the answers. Unfortunately I don’t. I am yet to work out what the best management tool is for me but I’m lucky to have understanding friends and family who don’t judge me if I say I’m spending the day in bed. If you have endometriosis, you have my complete sympathy and if you have any pain management tips or techniques, please share in the comments section!