176 million women suffer from endometriosis worldwide. That’s 1 in 10, a statistic that is rising year after year.
Endometriosis is when the tissue that is similar to the lining of the womb grows outside it in other parts of the body and there is currently no cure for this debilitating disease.
My first introduction to endo was about a year ago; I’d been getting pretty regular periods until October last year when they suddenly became more frequent and lasted for roughly two weeks at a time, which is not at all normal.
On top of my new menstruating cycle, I was getting unbearable stabbing pains inside my vagina that would cripple me for at least half an hour and sex was becoming incredibly painful.
It was time for the doctor, I was given a papsmear that came back with some irregularities, so I was then sent to get an internal ultra-sound, an experience that is nothing short of violating. I had a couple of cysts and a few less follicles than what is the norm.
After all the tests were done I went back to my doctor for the results and she said everything was pointing towards endometriosis and that I should consider having laparoscopic surgery to help deal with the pain and maintain some of the symptoms
The thought of surgery scared the hell out of me so I asked if there was anything else that could be done, so we changed my implanon over to see if a new one would alleviate any symptoms.
It’s been 8 months since then and nothing has changed, so now I’m at a point where I need to decide if I want this invasive surgery that won’t actually cure and may not even lessen the pain I’m getting.
Unfortunately I’m not the only girl I know who has dealt with this exact same thing. There’s millions of brave women and girls out there who suffer in silence because it’s such a personal thing to discuss even with a GP.
So here are some incredible women who are sharing their stories in the hope of raising awareness for this disease and just how crippling it can be if not treated right or caught early.
“I remember the first time it hit me. The pain. I was 15 years old. I woke up in the middle of the night, unable to get out of bed. I remember yelling out to my mum over and over until she finally woke up and rushed in. An ambulance came and rushed me to hospital.
Every eight weeks from that night I would suffer the same pain usually ending in me bed ridden in hospital for a few days. Following that, my chronic fatigue would burden me for 1-2 weeks. I was up to around 25 hospital visits before my first investigative surgery. They burnt off what endometriosis they could find and sent me on my way.
After that many hospital visits you get the ‘hypochondriac is back again’ eye roll from the nurses. It was from there I took on the ‘suffer in silence’ version of dealing with pain. How this greatly impacted my mental health. I remember waiting until everyone in the house was asleep and I would just cry.
I was 18 years old when I got pregnant with my son. I was told many, many times that pregnancy would ‘cure’ my pain. Well that was absolute bull shit. The pain still stands and is just as much of an inconvenience as it was 8 years ago.
Now I avoid hospital. I use home remedies as much as possible. Heat packs are a god send. Endometriosis fucking sucks. So many women suffer. Most of them in silence too. Most of us have lost jobs from too many sick days, and friends from constantly having to cancel plans. And worst of all most of us are suffering mental health issues from trying to deal with this devil.”
“Back in 2009, I got my first period, it was painful. The year went on and it got worse and worse and super heavy every time it came. I would be in pure agony every time.
After putting up with it for 3 years I finally went to a gynocologist and after a few tests they decided to do a laparoscopy, it was also decided to put in a Mirena (an IUD) while I was under. I went into Dandenong hospital and had the procedure done, I came out and they told me the Mirena was in place and that there were no abnormalities to be seen.
After a few months, out of nowhere I started bleeding and was in the most excruciating pain I’ve ever felt in my life. I was rushed to hospital and immediately put on morphine while they did a external ultrasound to see whether it (the Mirena) was positioned properly but it showed my uterus had been contracting it out which explained the constant pain in my lower abdomen, and it was lodged on a muscle just low of my uterus.
They got me onto a bed and pulled it out quicker than I can remember. It was the most instant relief I’ve ever felt. So from there I just went back on the pill, I started to skip my period for as long as I could before I would just spontaneously bleed. Which went on for another two years until I found myself the most amazing gyno who, no matter what, always had options for me.
I tried the many different medications and mini procedures that’s she offered (but) in the end she wanted to do another laparoscopy, which she would do for me. She went in and found my whole left side full of endometriosis. (The diagnosis) was a relief.
Unfortunately it hasn’t had much of a positive outcome for me besides the pain cutting down from extremely crippling to being able to manage with some (pain relief medication) Endone.
Eventually I was told about a new tablet that has come from America for endometriosis called Visanne, it releases only progesterone and has worked wonders! I take a tablet every day like you would the pill. I haven’t had a period for a year. I do get mild cramping day to day but barely a thing.”
“From around 2015 onwards my periods got more and more severe each month. Until September 2016 when I was suddenly hit with fatigue, nausea, pain, headaches and a constantly swollen stomach. I saw a number of doctors who told me it was probably nothing. After about three months of endless doctor’s visits I was finally diagnosed with Chronic Fatigue Syndrome. This was somewhat a relief.
However, I knew something was up when my periods were still getting exceedingly worse and sex was becoming more and more painful. So I went to see my GP and he referred me to get an ultrasound. The ultrasound came up with nothing, and I had the (female) radiographer tell me ‘It’s just part of being a girl’.
Fast forward to Australia Day 2017, I was completely overwhelmed with pain and was taken into emergency. The doctor attending to me kept me there for a couple of hours, and ended up discharging me with no pain relief, telling me that it was ‘probably just IBS’ (irritable bowel syndrome). I’ve had pain experiences similar to this if not worse since then, but because of the response I received, I turned to self managing my pain with codeine and heat packs.
I still knew something wasn’t right and I wanted answers, so I got a referral to see a gynecologist. She listened to everything I had to say, and referred me to a physio, psychologist, dietician and a clinical pain physician. As well as to get a DIE ultrasound by a specialist in Melbourne. I had the ultrasound, and it came up with definite traces of endometriosis on my left ovary as well as adhesions all throughout my uterine wall. I went back to see my gynecologist and was booked in for a laparoscopy for later this year.
In terms of how it’s affected my every day life, I’ve been constantly getting special consideration at both uni and work because most days the pain and other symptoms of the illness are so unbearable. I’ve have found my sex life with my boyfriend (as supportive and lovely as he is) to be not as ‘carefree’ as it once was because of all the constant pain.
I began doing lots of yoga and pilates, which has helped immensely with symptoms, as well as eliminating certain food groups out of my diet such as gluten, soy and inflammatory foods, which all seem to aggravate endometriosis.”
These are just three stories of incredibly resilient and brave women. There are 173 million more stories just like this, plus all the stories of women who are too ashamed to even bring this topic to light.
So please, if you think your period pain is abnormal, or you notice anything different about your little lady friend, go to your GP and get some tests done.
Check out Endometriosis Australia for more facts and information on endometriosis.