I call endometriosis my ‘invisible pain’. The silent sufferers out there will know exactly what I mean. It doesn’t just affect one area of my life, it affects all areas of my life, and you probably wouldn’t know it.
Endometriosis is a chronic illness with invisible arms that stretch out to taint and challenge every area of my life possible. It’s like an octopus with a poison touch.
If you’re reading this and think it’s about having a painful period, you are right. But it certainly doesn’t stop there. Endometriosis is a chronic illness with invisible arms that stretch out to taint and challenge every area of my life possible. It’s like an octopus with a poison touch.
So in the spirit of this Endometriosis Octopus, here are 8 ways it affects my life that perhaps you didn’t know about.
1. Painful Periods
‘Painful’ as a description just doesn’t cut it. Try debilitating. When menstruation hits me, it isn’t just Aunty Flow who comes to visit. The whole pain family comes to town.
There’s evil step-sister the Migraine, mean step-father Nausea and Vomiting, and horrible uncle Back Pain and Sciatica. They like to stay a while too – usually for up 9-10 days while the bleeding lasts.
The bleeding is extreme, filling a pad easily every 1.5-2 hours, and the pain is so intense I’m bedridden for days and feel like passing out. I remember at school my PE/Health teacher saying “periods are no excuse for not doing sport”. Well, she has never had endometriosis.
2. It Doesn't Just Affect Your Womb
What you may not realise is that when you have endometriosis, your problem isn’t just contained to within your womb. Nope. Tissue similar to endometrial tissue grows outside the womb as well, in places where it’s not meant to be.
It can grow on the outside of your uterus, on your ovaries, inside your fallopian tubes, on your bowels, on the tissue of your pelvis…do I need to go on? The biggest problem is that all this tissue in abnormal places responds to female hormones – they too inflame and thicken, break down and bleed. So if you have this tisue in your bowels, then rectal bleeding at times is likely. Fun, fun.
Imagine all this additional inflammation and bleeding, yet the bleeding doesn’t have anywhere to go. Scar tissue develops and surrounding tissue becomes irritated and prone to cause adhesion. Yes, organs can bind together. It’s happened to me – my fallopian tube and ovary got stuck to my uterus, and it is extremely painful.
3. Chronic Inflammation and Other Conditions
With all these extra cells about that are prone to inflammatory response, I’ve often been asked whether I’m pregnant. My abdominal region regularly starts to get inflamed to the point that I literally look 4-5 months along.
Irritable bowel disorder (IBS) is also common for women who have endometriosis. I had to change my whole diet to help manage my pain and inflammation.
Meanwhile, it’s probably no surprise that excessive bleeding during my menstrual cycle has also led to chronic anaemia.
4. Consider a Career Change
I was a straight-A student, got distinctions and high-distinctions through university, and my career prospects were amazing. As I progressed up the corporate ladder, I eventually came to manage my department.
The whole time, I was in pain. A lot of pain. I pushed through it, taking strong pain killers and anti-inflammatory medication. I sat there with back pain and sciatica. I’d escape to the bathroom and vomit from pain and nausea. I wore loose tops to hide my sore inflamed belly. I tried not to take sick days for fear of being judged and losing my job over it. It was my private pain. I was determined for it to NOT limit me.
But here’s the thing…I crashed every time. At most, each 6 month stint of pushing myself came at a cost to my health and I’d end up in hospital having surgery.
My doctor explained that with my condition, my body needed more energy to get through the day. It had to constantly fight inflammation. Pushing myself and being in a higher-stress management role meant that I relied more on adrenaline; and adrenaline is a trigger for inflammatory response. It became a horrendous cycle that I had to stop.
Eventually, I had to change my career for endometriosis – freelancing so I could be flexible and work around this ‘Endometrioisis Octopus’.
5. Forget About Making Social Plans
How do you explain to someone that you don’t know whether you can make their party in a month’s time, because you might be bedridden with pain? It’s not just hard for people to understand, it can also feel downright embarrassing.
If I’m lucky, my friends will catch me on a good day and I will actually get to enjoy a social life. Otherwise, it becomes near impossible with unpredictable and irregular periods to make and stick to plans.
If I’m extra lucky, my friends will understand or try to understand my situation and not be offended if I cancel… again.
6. Sex Can Be Painful
Painful sex with endometriosis is not uncommon.The pain can be mild or perhaps unbearable. It might be sharp and localised, or deep and widespread across the lower abdominal region. Sometimes the pain persists for up to several days after intercourse.
The pain usually comes from a flair-up of the condition, when endometrial lesions are larger or affect uterine nerves, ligaments and cause adhesion of internal organs.
Some women learn to work around the pain, or avoid intercourse on certain days when a flair-up is occurring; sex can be more than just penetration.
Having a relationship with an understanding partner is considered a blessing.
7. It Can Affect Your Fertility
Endometriosis is associated in 30% of women who have infertility. It took me years to fall pregnant because of endometrial scar tissue and adhesions. When I did fall pregnant, it resulted in miscarriage because the scar tissue appeared to prevent successful implantation.
Endometriosis can be a problem for fertility when:
- it presents in the fallopian tubes, blocking the ability of sperm to reach the egg
- scar tissue can prevent successful implanation
- endometriomas (bleeding cysts) form on ovaries which can interfere with fertility and the menstrual cycle
- surgically removing endometriosis can mean the loss of part or all of reproductive organ(s) – ovary, fallopian tube etc
8. Treatment is Usually Surgery
Going on the contraceptive pill will sometimes suppress symptoms of endometriosis because the body will also no longer ovulate or have a ‘true menstruation’. This doesn’t always work in extreme cases however, and surgery becomes the only option. I have had multiple surgeries for my endometrioisis.
Someone once said to me”can’t they just scrape it out? It can’t be that painful”. They had this notion that an instrument was inserted into the vagina and endometriosis was just scraped out that way.
So let me just clear the air – no it doesn’t happen this way. Laparoscopic surgery is required, meaning instruments are inserted through incisions made in your belly button and 3 other zones on your abdomen. Endometriosis found is burned off using laser, scar tissue is cut out and anti-adhesion stitching may be required. If endometriosis is found on the ovary, it is cut out. Complicated surgeries in more severe cases may require the ovary or fallopian tube to be removed altogether. Some women require hysterectomies.
It’s not fun. My surgeries have taken up to 3 hours to perform, and full recovery took me between 5-7 weeks.
So there you go. Gentle beast? No.
But I power on and find a way, because I’m an Endo Warrior.
Eleni Fegan is the founder and Managing Editor of DearBub Blog and Magazine which began from a personal journey of research and healing. Her motivation for DearBub is beautifully summarised in her Editor’s Letter: “I realised that there is beauty to giving voice to our experiences, and raising an awareness that we are not alone in them. I realised the immense power that ‘sharing’ had in transforming our sense of self and being through creating connection”.