Imagine constantly being in a state of fear and pain. For women living with endometriosis, this is a reality. Each day is unknown when you have a disease that can, quite literally, control your life. After years of dealing with endometriosis, I have finally decided to outwardly share and address various questions that I’ve been asked concerning it. For so long, I’ve been too embarrassed to discuss my experience. Now, with more organizations taking a stand for women’s health, the disease is being made public. As a result, many women are aware of the term, endometriosis, but unaware of its impact. For this reason, I have become incredibly open to sharing my personal experience. Hopefully it can give insight into life with endometriosis and allow you to better navigate the disease altogether. So, let’s explore the questions that I hear most often!
“What is endometriosis?”
Endometriosis is a disease where the tissue that comprises the uterine lining, also known as the endometrium, becomes present in other parts of the body. The disease actually has four stages: minimal (1), mild (2), moderate (3), and severe (4). Symptoms include heavier/long lasting periods, lower back pain, pelvic pain, nausea, and fatigue (among other symptoms). As a result women must deal with severe pain and possible infertility. I know that this disease sounds incredibly strange, but about 176 million women around the world are affected by it (endostats.com).
“Will I get it?”
Well, 1 in 10 women have endometriosis or will in the future (SpeakEndo.com). So, if statistics make the disease appear common, why isn’t it discussed more? Even though a number of women may have endometriosis, plenty are undiagnosed. Some choose to pass symptoms off as cramps or fatigue instead of looking any further. My mother has endometriosis but didn’t consider the likelihood that I would be affected too. This definitely isn’t her fault, but does show a pretty common mindset. It is much easier to assume that you ‘probably’ won’t get a disease than it is to research and look into it. So, yes there is a chance that you may have endometriosis in the future, especially if there is a family history, but it is ultimately indefinite.
“But you don’t look sick..”
After meeting countless doctors who treated me like a hysterical child, I started to believe that I was. For so many women battling endometriosis, this is a common experience. Most of us do not ‘look sick’, but we are. As endometriosis has been perceived as a phantom disease, women’s concerns and fears have constantly been undermined and overlooked. Why should women need an ‘endometriosis’ name tag to be taken seriously when their pain is perfectly valid?
“Are you okay?”
Ok, I can’t even tell you how many times I’ve heard this question. As a young woman with endometriosis that becomes incredibly diminishing. It almost seems like whenever I decide to share parts my battle with the disease, people look at me differently. I am no longer myself. Instead i’m the sick friend, daughter, or student. I’m sure that everyone in my life assumes they’re helping, but I really just start to feel like a fraction of myself. Of course I’m not always going to be at my best, but I’m absolutely strong enough to live with the disease.
“Is there a cure?”
Unfortunately, this is a disease that I will have for the rest of my life. I would love to create a more positive image of my journey with endometriosis, but it wouldn’t be real. I used to think that it would be best to sugarcoat my disease and make it appear lighter than it was. Now, I don’t mind sharing that sometimes I need medication just to get through my day or that even with the it I’m never truly at 100%. That’s my personal narrative and it’s something that I own completely. I can say, though, that I’ve gotten smarter and learned to listen to my body with the help of endometriosis. I think that that’s really the central message for women, both young and old, who are faced with any disease. It is essential to make your health and well-being a strong priority. While endometriosis has definitely modified my life, it has simultaneously given me the chance to love myself and take care of the body I’m in. A year ago I never would’ve opened up about my journey, but now I feel so much more empowered.
Also, even though there is not a cure there are preventative steps that can be taken to catch it before it worsens. The longer you wait the more serious it can become. Luckily I was able to catch it before reaching a more difficult stage of the disease, but not everyone is that lucky. If you have concerns about your health, then trust those instincts. It is much better to be safe than sorry.
***Hey girls! I wanted to remind you not to simply use the symptoms that I listed as your sole guide. Only you know how you truly feel. In keeping, if you think that you might have endometriosis or another disease/illness always consult your physician. Also, feel free to check out SpeakEndo.com for more information on endometriosis. There are countless stories just like mine that need to be heard. Let’s make women’s health a priority!
Sources
AbbVie Inc. “SpeakEndo.com Is Your Go-To Resource for Endometriosis.” Endometriosis Treatment Options – Learn How To Deal With Endo Pain, www.speakendo.com/.
“Center for Young Women’s Health.” Center for Young Womens Health, youngwomenshealth.org/.
“Endometriosis Statistics.” EndoStats – Endometriosis Awareness, www.endostats.com/.
“Endometriosis Foundation of America.” Endometriosis : Causes – Symptoms – Diagnosis – and Treatment, 24 July 2018, www.endofound.org/.