Tell your Endo story

Did you know that March is Endometriosis Awareness Month?

Unless you have it or know someone who does you’re probably thinking endo-what??? right now…

I find it amazing that there is so little known, both in the medical world and in the general public about a disease that affects 1 in 10 women!!!

Just stop and think about that for a minute...

That’s an estimated 176 million women worldwide who are suffering in silence…

Endometriosis is a hormonal and immune system disease where the tissue which lines the inside of the uterus (endometrium) grows outside the uterus too.  Like the lining of the uterus, this tissue breaks down and sheds every month resulting in internal bleeding, inflammation of the surrounding areas and formation of scar tissue and adhesions.  All the organs held within the pelvic cavity become “sticky” and some complications can include obstruction or interference with bowel and bladder function.

Some of the most common symptoms of endometriosis include pain before and during menstrual periods, pain during or after sexual activity, infertility, fatigue, heavy bleeding, lower-back pain, digestive problem, diarrhoea, painful bowel movements, constipation, irregular bleeding, pain related to urination and abdominal bloating.

I was diagnosed with endometriosis when I was 27.  I had been suffering with bad period pains for years.  I guess my family knew there was something seriously wrong when I took myself off to casualty one day when the pain got too much to handle.  I was admitted to hospital and they scanned me and found multiple cysts on my ovaries.  The Doctor said that cysts like this are normal and they should go away by themselves.  The pain subsided but the cysts remained and I was sent home none the wiser as to what the cause was. 

The same thing went on for months and months.  The pain was getting worse.  It was there for most of the month at that stage and yet I was getting no answers.  I thought I was going crazy and was thinking I just need to suck it up and get on with it.  Luckily my big sister Maria was with me on one of my hospital appointments to act as my advocate.  With a little “gentle persuasion” from Maria the Doctor agreed to carry out a laparoscopy to see what was going on.  I think he was even surprised at what he found.  I was diagnosed with stage 4 endometriosis.  My fallopian tubes were completely knotted around my intestines and all my organs were literally stuck together.  It was a relief to finally have a diagnosis and to know that I wasn’t going completely crazy after all. 

I’m now 41 years old.  I’ve had numerous surgeries and have tried lots of different medications during the past 14 years.  They help with the pain for a little while but you always end up right back at square one again.

I’m now pretty much in the middle of the menopause with it being 16 months since my last period. I always thought that the menopause would bring some relief and my body would give me a bit of a break but unfortunately my symptoms are now worse than ever and further surgery is on the horizon.

The idea of this brilliant campaign which was started by The Endometriosis Coalition is to create more awareness around this disease.

It takes 10 years on average for a woman to be diagnosed with endometriosis.  We are fobbed off and told that pain is “NORMAL”.

We need to build awareness so that it doesn’t take this long for women and young girls to be diagnosed.

You don’t need to suffer from the disease to show your support.  If you know 10 women then the chances are you already know someone who does…

Get a piece of paper and write “My Mother/Sister/Daughter/Friend/Girlfriend is 1 in 10”.  Then take a black and white picture and post it on social media using the hashtag, #1in10.

Let’s get sharing.