The month of March marks Endometriosis Awareness Month, a movement dedicated to raising worldwide awareness of this often debilitating disease affecting 1 in 10 women. On this day, exactly 12 month ago we published a set of stories of four women living with endometriosis. This year we have checked back in with those women to see how things have changed for them in in the last twelve months.
Keely, One Year Ago
I was 22 and being rushed to hospital in the back of my dad’s Subaru. I kept thinking over what had happened that day, what could’ve made this pain come on suddenly in the space of 30 minutes. We waited 9 hours in the emergency department waiting room. They completed ultrasounds, blood tests, gave me what pain relief they could, and in the end― nothing. All tests came back negative. The only thing they could do upon my discharge was refer me to a gynaecologist. Prior to the pain starting, I never had any other symptoms pointing towards something being wrong. I didn’t get painful periods, or have any severe bloating, and wasn’t starting a family just yet, so I had no other reasons that could’ve shown something to be wrong. Just one day, something changed, and the diagnosis was endometriosis.
Endometriosis is where the lining of your uterus grows elsewhere. It could be on the outside of your uterus, which is the most common place, but it can also grow on your bowel, stomach, kidneys, anywhere. There is no cure, only treatments to minimise the amount of pain you are in. Two parts of my diagnosis stand out as being the hardest. The first was sitting with my husband in my gynaecologist’s office and being told that I may struggle to have kids. That your normal plans of how to start a family may not happen, and you may struggle for years. The second hardest was grasping that I will have this disease for the rest of my life. It not only affects me, but affects my husband, my family, my workplace if I am sick, my social life, my sleep, the food I eat― everything, and that may happen for years to come.
I like to try and focus on the positives: I’ve made some amazing friends through support groups, and grown closer to friends experiencing the same. It also opens the opportunity for women to feel more comfortable discussing their gynaecological issues, purely from being open about it myself. There are so many women who have gynaecological issues, and it’s sort of a taboo topic that people don’t like to talk about, but it should be talked about. Women need to be able to grow their knowledge of their bodies, and in a supportive environment. I’ve been incredibly lucky to have people around me who are supportive and understanding, especially in a workplace, but others I know haven’t been so lucky to have that. Or they don’t know what options are out there. My biggest desire out of this is to educate others of what endometriosis is, and how they can help those who have a chronic disease.
The biggest way you can help people with endometriosis is to learn about the condition and try to have more understanding― it’s different for everyone! No day is the same when it comes to pain, some days the pain may be so bad I can barely move, other days I may have no pain, and some are in between. Try and minimise any comments based on lack of understanding. I’ve had a whole range, not only from friends but also from health professionals. It can be hurtful and frustrating, and shows us that you aren’t willing to understand. And lastly, be open for conversations regarding women’s health. There is so much power in health education, I am just glad that I can contribute to the education of those around me, in the hope that someone may receive an answer for their pain.
My endometriosis journey is not one that is stationary. It is one that moves and changes with different stages of my life. As my knowledge and awareness grows, so do my treatment options, my willingness to share, and my relationships with others. It is one where the pain or chance for pain is always in the back of my mind — if I do this will I exert too much effort and pay for it later; if I eat that will I become bloated and then struggle at the end of the day? More and more, I am realising the importance of a holistic approach with managing a chronic disease.
My treatment options have changed from ones of managing pain, to managing more symptoms that may result in increased pain. Diet was a large change for me, and I found that by cutting lactose I would minimise the bloating I feel and maintain a better pain level. I had also found relief from seeing a pelvic physiotherapist. While our sessions were uncomfortable and ‘intimate’ (the nature of any treatment that I attend for endometriosis), it has helped decrease my tense pelvic floor muscles.
The year has not been without extreme pain episodes. Only eighteen months on from my first laparoscopic surgery, I was booked in for another excision surgery. This time the endometriosis had grown back worse — and in such a short amount of time. I had multiple adhesions, but once they were removed I felt like I could move more freely again — if only for a moment. I was admitted to hospital for a ketamine infusion due to severe pain. I couldn’t manage at home — and that’s the hard thing. I would rather be at home, at least in the comfort of my bed eating the food I wished, but that’s not always possible when you have an acute episode of pain. While acute pain is short-lived, it feels like the longest time, where you are constantly unsure of if the next person to come in will be empathetic and understanding, or dismissive of the pain you are experiencing.
A lot of this journey hasn’t been me by myself — but with my caring husband by my side. He is the one who heats up my heat pack when I can’t get up, who brings me pain meds to help, or rubs my back in the shower as I cry. He is the one who fights for me in hospital to get care, and takes sick days off to be by my side. The one who is now explaining to his friends at work or other circles about endometriosis, and is comfortable using words like ‘uterus’ and ‘oestrogen’. Chronic disease doesn’t just affect the individual, it affects their family and loved ones.
The most joyous part of our year has been finding out we are pregnant. A large factor of endometriosis is the struggle with fertility and pregnancy, something I have witnessed people close to me go through — my husband and I know we are lucky. Pregnancy hasn’t been without its challenges, previously if I had pain I could take what I needed to get through. Previously with pain it would just be me, whereas now I am concerned for our child too. There are concerns that if I have a girl, I may pass on this disease to her and watch her struggle with pain and judgement from others. There is hope that pregnancy will calm the growth of my endometriosis and pain, yet concerns that it may not help. Endometriosis, or any chronic disease management, is a part of a journey, one that changes as your life changes — however, if we make it through one year, we can make it through the next.
Endometriosis can be difficult to diagnose and has a wide range of possible symptoms. If you think you may be suffering from endo visit your GP. There are heaps of great gynecologists working in both the public and private healthcare systems who they will be able to refer you to.
Don’t forget how important it is to get regular pap smears and sexual health checks.
Endometriosis Australia is a nationally accredited charity that endeavours to increase recognition of endometriosis, provide endometriosis education programs, and provide funding for endometriosis research.