"Vanessa, remember you have endometriosis". Those words swirled around in my head but my mind refused to process the meaning behind them. My doctors eyes compassionately swept over my face, settling on my eyes, he patiently waited until his words sunk in; unfortunately they just wouldn't. Firstly, I didn't know what endometriosis was, and if he explained it to me during the process of my treatment, it went unnoticed. Secondly, I was battling catamenial pneumothorax at the time - this is when a woman has her menses and within 24-48 hours her lung collapses. By this time, I underwent major lung surgery and had a total of ten chest tubes, so endometriosis was the last thing I was thinking about.
I recall that one fateful night, being awakened by severe pain in my abdomen and lower back. Try as I might, I could not go back to sleep; as I couldn’t escape the severity of that sharp pain. This would go on for months, the pain was blinding and crippling, often leaving me bedridden for days. It seemed to me my life was a constant battle to live (not exist) and be happy in life. My battle was against my own body and mind. I was determined to win.
"I do?" I asked my doctor. I barely recognised my voice, it was weak with hurt. My doctor nodded his head. "Yes, you do. You have had to be one of my most difficult cases treated. I removed an incredible amount of endometriosis from inside of you. Remember you also have it on your lung. These tissues may have escaped to other areas of your body. Doing more surgery runs the risk of causing more damage than good". Those were not the words I wanted to hear. I wanted to be fixed, to be made whole again. I left my doctor’s office burdened with despair. I was silent and reflective during my ride home. The world seemed a different place to me. In a matter of minutes I had been changed inside forever. There was a gamut of emotions swamping me. Anger was in the lead, I am not perfect by any means, but, I’ve always been mindful of my deeds and actions. I respected myself and others. I believed in God and attended church faithfully. Yet, I was living a life of daily chronic pain. There was no cure for me. Those words became a song in my head, it played on repeat. "There’s no cure for me". I looked up and noticed the sun was still shining, and I almost became angry. I looked around and the world was still going on, oblivious to my struggle. How dare the world still move forward, and my world had just been turned upside down!
I made a decision that day. I decided I would not let this situation defeat me. I was too young to carry this cross for the rest of my life. I went home and began to research what endometriosis was. I was Trojan; I studied and applied what I learned to my daily living. Sometimes it can take up to 12 years for a patient to be diagnosed with endometriosis.
Approximately 176 million women and girls worldwide suffer from endometriosis; 8.5 million in North America. I’ve also learned how to eat all over again. I had to cut out red meats, I’ve gotten rid of dairy products, and I’ve removed wheat products out of my diet as well. I started eating healthily. I removed myself as best as I could from stressful situations, as this could exacerbate pain levels. I began to do meditations. I began to come to grip with the fact that I could live in spite of my situation. I just had to readjust. I also made it an issue to not remain silent anymore. Respectively, talking about something as private as your cycle can be quite awkward, but this slight discomfort is all worth it if I can inform and enlighten people about endometriosis. I don’t want anyone to suffer needless for years, because of lack of information. So, I continue to lift my voice, sharing my testimony, enlightening people about endometriosis - and I continue to keep the faith, because endometriosis doesn’t have me.
Thank you for sharing your story Vanessa. I can completely relate to how your diagnosis of endometriosis left you feeling so angry at the world. It can be hard not to be bitter when coping with this condition!
If you would like to contact Vanessa, you can follow her on Twitter @nessrichardson or alternatively, you can follow her blog or have a read of her online magazine.
Can anyone relate to Vanessa's story? Did you know what endometriosis was when you were first diagnosed? Has endometriosis or menstruation affected your lungs? Has endometriosis left you feeling angry at the world?
Remember, everyone of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please email it to me at firstname.lastname@example.org along with a photo and I'll pop it on to here for others to read.