Guest post by Dr Kara Johns B.Sc. (Hons). MD. PhD. DRANZCOG. Creator and Director of SBK.
This is what I heard when I had my first menstrual bleed at 14 years old – ‘welcome to womanhood’. 25 years on I still vividly remember thinking ‘how is this fair?!’ There isn’t much about a menstrual bleed that is fun or exciting, but it was hardy a joyous moment to be doubled over in pain, have blurry vision, feel like I was going to throw up and need to spend the day in bed. Day 2 of that first menstrual bleed was more insulting, as I needed to excuse myself every hour as I was soaking through my pad. I could not understand how no one had prepared me for how horrendous this was going to be! My friends all looked at me baffled when I said what I was experiencing, as though I was being dramatic or making it up. My mum would smile and tell me to ‘get use to it’!
Every menstrual bleed was like that. Severe pain. Always before I would start bleeding. Pain in my pelvis, pain in my back, pain in my legs, even sometimes pain that felt like it was a knife inside my butt. Within 1 hour of bleeding my vision would start to change, I couldn’t think clearly, I’d get nauseated, and I had to stop anything I was doing and go home to lay in bed – with pain relief and a hot water bottle! The intensity of this experience did reduce once I started taking the contraceptive pill, but it was always still there. Most months I would need to take time off school/university/work.
Fast-forward to 2017 when I was working as a doctor in the gynaecology department of a local hospital, I started to get constant right sided pelvic pain. I told one of my friends in the department who was almost a qualified gynaecologist and it was the first time someone said to me ‘I think you have endometriosis!’
Endometriosis is where the hormone responsive tissue that lines the inside of the uterus (endometrium), grows outside of the uterus. The endometrium sheds off the inner wall of the uterus in response to a hormone change and leads to the menstrual bleed. But, the deposits of endometriosis also respond to the hormone change and bleed, but that blood does not have a path to exit the body. It often causes significant pelvic pain, back pain, bladder changes and bowel changes. The pain can be overwhelming, leading to nausea and exhaustion. As time goes on, endometriosis deposits can grow and become like velcro inside the pelvis, leading to adhesions between different areas of the pelvis. In extreme cases, all the pelvic tissues can get stuck together.
In addition to those delightful symptoms, the disruption in life every menstrual bleed puts people with endometriosis at a significant career, educational and financial disadvantage. This is not even considering the cost of getting diagnosed and treated, which is increasing due our health system being increasing not fit for purpose.
Now, my journey with endometriosis isn’t one of having been dismissed or misdiagnosed by the medical profession for years – it is a story of having not recognised that my menstrual experience was ‘abnormal’! All the messaging i’d received since that first menstrual bleed at age 14 was that I was being dramatic or too sensitive. I’d learn’t strategies to cope and then worked harder to catch up on anything i’d missed. I didn’t pay a great deal of attention to it, so even after studying medicine and working as a doctor for 2 years, I still didn’t consider my menstrual experience to be abnormal!
The nudge from my friend in 2017 saw me speak to my GP, have a pelvic US and ultimately undergo surgery. I had my first ‘laparoscopic excision of endometriosis’ surgery in 2017, at age 33. It showed multiple endometriosis deposits within my pelvis, and my right ovary slightly adhered to the side wall. Surgical excision of endometriosis deposits is the ‘gold-standard’ treatment and the only way to get a diagnosis, as the tissue that is cut out is sent for assessment.
Surgery wasn’t much fun, but it did change my menstrual experience. My first few menstrual bleeds after surgery were so strange; they just appeared! No warning signs of pain, nausea, vision changes, desire to lay in bed – just bleeding. THIS IS WHAT MY FRIENDS HAD BEEN EXPERIENCING ALL THESE YEARS?!?!?!?
I’ve since had two more surgeries to remove new endometriosis deposits and I now professionally work with many people dealing with endometriosis. It is especially satisfying to work with young people to empower them to recognise endometriosis symptoms early and have the courage to seek treatment so that their quality of life isn’t as impacted as mine was.
Becoming aware of menstrual disorders is everyones business. It is not normal to have extremely painful menstrual bleeds. It is not normal to need to take a day off every month because your menstrual bleeds make you non-functional. It is not normal to vomit or feel like you are going to vomit when you have a menstrual bleed. Knowing that these are not normal menstrual experiences means that you could be the person that tells someone ‘your menstrual experience sounds tough, have you spoken to a medical doctor about that?’
If any of this story sounds familiar to you, please see a GP that has an interest in women’s health and talk to them about your concerns.
- pelvic pain, often cyclical starting prior to the menstrual bleed, but can be a constant pain everyday.
- nausea with menstrual bleed
- bowel changes with menstrual bleed – constipation or diarrhoea
- bladder changes with menstrual bleed
- painful sexual intercourse
- back pain
How to get diagnosed:
- the only way to get an absolute diagnosis is to have surgery. If any abnormal tissue is seen, it is biopsied and sent to a pathologist to identify the type of cells within the biopsy. • a pelvic US can help the decision to head to surgery or not, as it can show clues of endometriosis.
- there is no blood test that can diagnose endometriosis.