BY MONIQUE CONIBEAR (MUMUS Community and Wellbeing)
Before this month, I thought I knew what endometriosis was. I had learnt a bit about it at uni, done a bit of my own research and even read some personal stories from women who have experienced it. However, the truth was I didn’t really know that much at all and even now, I can’t completely grasp the impact it would have on someone’s life.
On the 4th of March this year, just 4 days into Endometriosis Awareness Month I got a call from a friend. For years, this friend had been experiencing horrendous abdominal pain. She had gone through both gastroscopies and colonoscopies to try and diagnose it, had a resting heart rate above 100, had been diagnosed with postural orthostatic tachycardia syndrome (POTS), and had even had a loop recorder device implanted to record her heart rate and rhythm 24/7. Unfortunately, despite all this they still couldn’t figure out exactly what was causing her abdominal pain and a lot of the time doctors simply ruled it down to ‘anxiety’ without fully listening to her story.
Then on the 4th of March she had another visit to the emergency department with severe abdominal pain linked to her menstrual cycle which had put her into a massive POTS flare up (increased heart rate and large drop in her blood pressure making her feel faint). The doctors asked for her permission to do a transvaginal ultrasound and of course at first, she was hesitant. By this stage she had gone through numerous investigations, MRIs, colonoscopies, gastroscopies etc. and a lot of them had come up completely clear. To decide to have such an invasive investigation with the risk of it revealing nothing was a difficult decision to make however she went through with it and was lucky she did because they found cysts on the endometrial wall.
“Studies suggest that endometriosis affects 1 in 10 women during the years they have their periods, 10% of the female population”
Endometriosis is a condition where tissue that is similar to the uterine lining grows outside the uterus and causes pain and/or infertility. Due to the nature of this condition, it can only be fully diagnosed by undergoing laparoscopy and having a biopsy taken. Although my friend wasn’t definitively diagnosed with the transvaginal ultrasound, the doctors are now pretty confident she has endometriosis and for once she finally has answers to why she has been experiencing so much pain.
Studies suggest that endometriosis affects 1 in 10 women during the years they have their periods, 10% of the female population. Diagnosis of the condition is often delayed, with an average of 7 years between onset of symptoms and diagnosis. The reason for this is endometriosis is incredibly unique and individualised to every person. For my friend, the pain didn’t always occur at the same time as the periods and as a result it was exceedingly difficult to diagnose.
One of the ways we can help is to increase awareness of endometriosis. To let women, know that it isn’t normal to experience severe period pain and to give them a space to be heard.
This ENDOMARCH and beyond, take some time to learn more about Endometriosis and how you can help those around you who may encounter it: