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. Endometriosis effects a woman’s reproductive organs when cells similar to those that line the uterus are found in other parts of the body such as the bowel or bladder.
We have reached out to four women with endometriosis to share their stories with us.
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.
I have often said that loneliness is a symptom of endometriosis. I have spent the better half of my adolescence and early twenties feeling alone and undesirable while in excruciating, nearly constant pain that has left my heart aching for a change. For the past eight years: paracetamol every four hours, ibuprofen every six hours and all of your typical opiates and sleeping pills have barely calmed the pain I feel inside.
I have spent the last eight years apologising to employers for missing work, to my boyfriend for miscarrying our baby at thirteen weeks, to my university conveyors for requesting another extension, to medical professionals when I needed medications, and to my family and friends when I became a tired, cranky bitch of a woman. It is estimated that one in ten women worldwide suffer from this disease. One in ten women apologising for being unlucky, and fighting against their own bodies each and every day.
‘Endo’ is an autoimmune disease in which cells closely related to the endometrium cells are found outside of the uterus. When a woman begins a menstruation period, the endometriosis cells also bleed. This causes extreme pain as the blood does not have a way to exit the body, it is trapped in the pelvis. As a result, these cells cause scarring, inflammation and growths on other organs within the pelvis. I am bombarded by messages that painful periods are not normal, but it is my normal. It is normal to discuss medically induced menopause at age 21 with my doctor so that my body can rest. It is normal to research the price of freezing my eggs. It is normal to silently cry in the bathroom after sex because it just hurts so damn much. It is normal to pee through a plastic tube. It is normal to call my mother in the midst of a panic attack when I realise the endone box is empty. It is normal to tell my father I have a pre-cancerous cervix.
I hear stories of women having one surgery where the endometriosis growths were removed and I feel so overwhelmed with envy that they have never suffered again. I had my fourth surgery a fortnight ago, and was advised that I would most likely need surgery every two years. I hope one day I can come home from hospital to see the children I managed to have with the man who never left when this disease became difficult for him. I just have to keep fighting until that day comes. The one in ten women worldwide just need to keep fighting.
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.
Read Part 1 of our article Living with endometriosis here.