March is Endometriosis Awareness Month – a condition that affects about one in 10 women.
Endometriosis is when the tissue that lines the uterus grows outside of it, causing extreme and often debilitating pain.
Symptoms vary, which means there is a current 7 – 10 year delay in diagnosis – it can only be diagnosed 100% through having a laparoscopy in which a tissue sample is taken for a biopsy. There are treatments available, but no cure.
To mark Endometriosis Awareness Month, we invited host of triple j’s Good Nights program, Bridget Hustwaite to share her experience of living with this condition.
When did you find out you had Endometriosis?
I found out in August last year after having a laparoscopy. Prior to this, a pelvic ultra sound revealed some cysts on my ovaries but it wasn’t until this laparoscopic procedure that I was officially diagnosed with stage 4 endometriosis, spreading across my bladder, rectum, bowel and pelvic side walls.
After enduring the pain for the last 6 years, it was actually a huge relief finding out. I was just so glad to have answers so I could move forward and figure out how to manage it.
How did Endometriosis impact your day to day life before and after being diagnosed?
Pre-diagnosis, Endometriosis was the reason my periods were so hectic! The pain I would have the day before bleeding was so intense and nauseating, I would have to always take the strongest pain killers to manage it. Quite often I would have to take the day off work – it was that bad. I would always keep track of my period and avoid making commitments when I knew it was coming, so it really impacted my social life. It’s also taken a toll sexually; I would often associate being intimate with pain so it was hard to enjoy that time with my partner, because I was in fear that it was causing this debilitating pain.
Post-diagnosis, I’ve found my medical treatment to be quite helpful with the pain management. It works differently for everyone, so see your Doctor about what might work for you. I’m also finding myself to be a lot more mindful of my diet because some foods can promote inflammation. With the combination of those things, I’m feeling a lot better and taking less time off work which is great, because I love my job!
How has Endometriosis enabled you to see things differently/more clearly?
There’s definitely a lot of negatives about having Endometriosis but the fact that there is no prevention or cure has really motivated me to be more vocal about the condition.
I don’t want to use my energy dwelling on having a chronic illness, instead I’m constantly thinking “How can I use this knowledge to my benefit and what good can I get out of it for myself and others?”
So if anything, having my Endometriosis diagnosed has enabled me to think a bit more positively and given me that extra drive to help others who are also suffering but may not have the platform to speak up about it like I do.
What would you say to people who also have or think they have Endometriosis or something similar?
You know your body better than anyone else so if something doesn’t feel right, get it checked out. If you’re being dismissed by one GP, find another one. Unfortunately the diagnosis of this condition requires some hardcore persistence and it can take YEARS for an official diagnosis to be made. It took me 6 years! I would also recommend keeping a pain diary and seeing a GP that specialises in women’s health.
If you already have Endometriosis or something similar, I salute you! I know how difficult it can be, but please know that you are not alone and there a lot of great support groups out there.
Best self-care strategy for Endometriosis?
I have a few! Firstly, a heat bag is a gal’s best friend. I honestly could not live without them, I have two at home and one at work, you never know when you’ll need to whip that bad boy out! I also try not to go too crazy on the painkillers, so in my backpack I have a roll on bottle of Frankincense and Clary Sage essential oil, which I apply to my lower abdomen whenever I flare up. Peppermint tea is always good when I’m feeling bloated and I also take turmeric tablets because it contains anti-flammatory properties.
Who is your support system?
I’m lucky to be surrounded by so many wonderful people including my partner, Matt. Our relationship was long distance last year and he took time off to fly to Sydney for my laparoscopy to look after me. My parents have always been so caring and supportive too, and I’m really grateful that my bosses at triple j are extremely understanding of my condition and will always accommodate if I need a day off or time to see a specialist. They’ve helped me share my experience with our listeners both on air and online and I’ve received so many messages from young women who’ve said if they didn’t hear me talking about endometriosis on the radio, they never would have seen a doctor to talk about their own concerns. I’m also a member of a few Facebook support groups which I’ve found really handy for information on medical treatments and symptoms.
What’s one thing you think people should know about Endometriosis?
Endometriosis is often referred to as “the invisible illness” because there are no outward symptoms that women display, so it’s easy to feel like our suffering is not validated because others can’t literally see it. So I think it’s really important that people are aware and understanding of that. Also, there is no cure for Endometriosis. I think there’s a common assumption that once you have a laparoscopy to remove the Endometriosis, the pain suddenly disappears and you’re all good. I wish it was that simple. There are ways to manage the pain but unfortunately, there is no cure…yet!
Anything else you would like to comment on about Endometriosis?
I’d just like to encourage more conversations about it. I hope that me being vocal about my experience will help prompt that dialogue for others who are also suffering, or even for those who have loved ones that are suffering and they want to obtain a greater understanding of Endometriosis. More conversation and awareness will hopefully lead to more time and money spent on research and ultimately finding a cure!
If you would like more information on Endometriosis or find out how you can help end the silence around Endometriosis, click here.
The information in this blog is not a substitute for a medical opinion. If you or anyone you know has suspicions they have Endometriosis or are experiencing symptoms, we recommend contacting your doctor.