In light of March being Endometriosis Awareness Month, I wanted to share my experiences. I have struggled with painful periods and heavy bleeding since I started menstruating at age 12. Now, almost 31, I have developed a very high tolerance for pain. It was about a year and a half ago when the pain began escalating to a point where it was becoming unbearable. I had to call in to work several times. For fear of losing my job altogether, I voluntarily reduced my hours since I felt like I could handle short days, even on the days I was in pain. I ended up having two surgeries last year, a hernia repair and a laparoscopy.
I had a painful and visible lump in my groin area, and a pelvic ultrasound confirmed a 5 cm chocolate cyst on my left ovary and a 2 cm cyst on my right. After having the lump removed, my surgeon explained to me that the mass was actually a hernia filled with endo tissue. They removed the tissue and repaired the hernia, but I would still need surgery for the cysts on my ovaries. I was formally diagnosed with endometriosis, and told that I was in stage IV. Feeling slightly depressed, I focused my attention on work and leisure activities to try to combat the stress, and thought I could tolerate the pain and heavy bleeding like I always have.
On my worst days, it felt like someone was literally taking a knife to my entire abdominal region and slowly carving out my insides. I know that sounds awful, but it is the best way to describe the pain. I could only curl up in a ball with a heating pad. Sometimes I would just lay on the floor and kick and thrash around because I could not find a position that relieves the pain.
This disease has taken so much out of me, physically, emotionally, and now financially too. The fatigue I feel from my body constantly fighting the inflammation has taken a toll. It is a deep fatigue, a level of tiredness that is hard to describe. It has interfered with my life in so many ways and caused me to feel a great deal of anxiety on a regular basis. I discovered from my last surgery that endo had spread to my diaphragm (also rare). The surgery itself has helped to lessen the intensity of my abdominal pain for the time being. However, I continue to experience very heavy bleeding and fatigue. My hot water bottle is never far from reach. I remain hopeful there will be a permanent cure someday.
My heart goes out to all the women who have shared their stories and given me strength to continue my own “invisible illness” fight. One of the toughest things is trying to maintain relationships with friends and family. After a while, people just naturally get tired of hearing “I’m not feeling well.” Luckily, I have very supportive people around me, and attending church has also given me a source of strength. All in all, I feel blessed, despite the disease I live with.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.