Living with Endometriosis
Have you met Ellie?
Maybe you’ve crossed paths with her. Or maybe, like so many of us, you’ve exchanged a passing smile with a woman who shares a profound commonality with her, without knowing it. We’re quite good, us women, at hiding our pain - but here at Oi we firmly believe these hidden struggles are something that should be brought into the light and talked about much more often. Quite loudly, in fact.
Ellie is one of 190 million - which is roughly 10% - of women and girls globally who live with endometriosis.
(She’s also the one-in-a-billion dear sister of Organic Initiative’s CEO, Clare!)
But what exactly is endometriosis?
Endometriosis is a chronic disease in which tissue similar to the lining of the uterus grows outside the uterus. This leads to inflammation and scar tissue forming in the pelvic region, and can cause excruciating pain and challenges during everything from monthly periods and intercourse to fatigue and pregnancy. A new study has even confirmed the link between fertility, miscarriages and endometriosis.***
This is no minor inconvenience easily dealt with by a few Panadol. It's a life-altering condition that can last from a person's very first menstrual period until menopause. There’s no known cause, and no cure - however its symptoms can be treated or managed with medicine and surgery.
Beyond the diagnosis
These clinical descriptions from the World Health Organization are, well, quite clinical. Beyond there lies a deeper, more personal narrative - the stories of how endometriosis affects women everywhere in the world, every single day. We believe it’s vital to hear from real women who live with endometriosis to gain a better understanding of its impact, and to spread awareness to those who may be experiencing symptoms but don’t yet have a diagnosis.
So, we asked Ellie, and she was kind enough to share a glimpse into her life with us.
When were you diagnosed with endometriosis, and what symptoms drove you to see a doctor? (i.e. How do you know if you have endometriosis?)
I first started getting the pain associated with endometriosis at age 16, and was not formally diagnosed until in my mid 20's.
Is there a lag time of diagnosis?
Yes there was, I had to push hard with doctors. The issue is, when you are young and know no better, you just think the pain is normal and everyone has this same pain.
How has living with endometriosis impacted your life?
You learn to live with endo as best you can and try not to let it stop you doing things as much as possible. However it has been very debilitating over the years and has impacted me in many ways, the intense pain, the vomiting, sore back, extreme aching hips, the daily referred pain, extreme fatigue, the very heavy clotting periods, operations, the miscarriages.***
While you try to just box on, there have been many days off work, or days where I have had to sit with hot water bottles at work, days where I have been bent over barely able to walk. The many social things over the years, which I have just had to miss. Days when you can't lift the groceries into the car, as you are in so much pain. The biggest thing was being told it would be very difficult to get pregnant and then having three miscarriages.*** However we managed to have two beautiful boys!
How do you treat endometriosis?
The biggest thing is getting on top of the pain early. Once you can get on top of the pain, it can be manageable. I worked with my doctor to get drugs that worked effectively. This did take a while to find the best combinations of drugs. The best invention too, is the wheat bag! Find a nice long one that you can wrap around your tummy and it helps a lot!
Does diet help alleviate endo symptoms?
I did find eating "white" foods, such as white bread, potatoes, white rice and processed meats made my tummy bloated and made the pain worse. I do find walking and exercise helped me generally with coping with the impact of endo. I would not say it helped with the pain, just more the mental stamina to get through.
Is there anything else you’d like to share about endo, or about your experience?
Having an operation in my mid 30's was a game changer for a number of years. I had a lot of referred pain everyday, in my upper back, between my shoulder blades. I lived with this pain daily over many years. The day after my operation I remember waking up in hospital with no upper back pain and thought it must have been the medication they had given me, but I never had that pain again, ever! After having my operation and then having two babies, my endo was good for a few years. It returned in my mid 40's and I now still suffer from it, but not to the extent I did in my 20's/early 30's.
The other difficult thing is the misunderstanding from other people, I never forget the time I was in such severe pain on a very busy day at work, laying on the floor with a hot water bottle, trying to carry on working and my colleague saying just throw back a couple of panadol and get on with it!
In my late 20's to early 30's I was at my worst. During these years, the vomiting with the pain was intense. This also made it difficult to try and carry on a daily routine. I lived in Wellington in my early 30's and for a number of months prior to my operation, I would have to catch a taxi to my doctor, for a jab in the bottom to stop the severe vomiting, sometimes twice a day.
Do you have any favorite education resources on endometriosis that would be worthwhile for us to share?
Not that I can recall. However it is reassuring to see endometriosis support groups within the community, in schools and on Facebook. With more awareness, I hope there becomes better understanding from people who are fortunate to not suffer from endo.
My best advice is, if you are in severe pain with your periods, try and get an early diagnosis. There are better drugs coming out all the time, try and get on top of the pain as quickly as possible. Buy a long wheat bag!
** Sources: World Health Organization
*** A new study linked here has confirmed the link between fertility, miscarriages and endometriosis. Before this study, it was not clear.