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Arlene’s Story (Endometriosis)

arlene's story endometriosis Hi, I am a stage 4 endometriosis survivor. As a young lady, I always suffered from heavy menstrual pain and heavy bleeding. I was told that we, meaning females, have to go through this as a part of life. I used to joke that if I ever get to heaven, I will give Eve a piece of my mind because she is the reason women have to suffer every month. I accepted this as being normal, until I was diagnosed with stage 3 endometriosis 6 months after the birth of my son. I had 9 operations in 8 years. After fighting for what felt like a lifetime with my gynecologist, he agreed to do a full hysterectomy. I was only 33 years old at the time.

I went through a bad divorce and some financial difficulties due to my illness. I used all my sick leave and personal leave every time I underwent for an operation. I also went on unpaid leave twice, since I used up all of my paid leave. My family thought I was faking the pain to get out of doing simple chores at home. The doctor said it was a miracle that I got pregnant, considering the condition that my female organs were in. Sometimes, I get jealous when I see some one my friends or family getting pregnant because I had to make the decision at the age of 33 to get a full hysterectomy or try getting pregnant and suffer through the pain. The pain won, and I went for the operation in June 2011, and I sometimes still get little stabs of pain in my lower abdomen.

Mine was severe, the adhesions grew so fast that when they did the hysterectomy; my womb, intestines and a part of my urinary tract were all attached to each other. The doctors had to remove part of my intestines to remove my womb and my right ovary. My left ovary was removed due to an ectopic pregnancy, which was caused by the adhesions that blocked the fertilized egg to pass through the fallopian tube. After the operation, I had reintroduced foods to my intestines like a baby being introduced to solids from liquids. After the 6 months of recovery, I felt relieved that there would be no more period pains, bloating or abdominal pain. Yep, so I thought…

Fast forward 9 years. I went for my yearly mammogram, due to family history; I lost my mom and two aunties to cancer. I decided why not do a check up at the gynecologist, because it felt like I still ovulate & get all the symptoms of periods except the bleeding. The doctor asked me did we not remove the remaining ovary, and I said yes. Two days later an MRI, revealed ORS, ovarian remnant syndrome. So, we scheduled an operation to remove the cyst that was the size of a golf ball, then Covid-19 hit. My operation is now scheduled for the 9th of December, a year since my diagnosis. The year of 2020 has been the worst; I lost 4 months of income, was diagnosed with diabetes and high blood pressure, and this recurrence of endometriosis as well. Luckily, my second husband is patient, caring and so understanding. So, to all of you reading my story, I am sending my love. We are all in this together. That’s my mom in the photo with me. Our last mom & daughter outing before she passed away from pancreatic cancer.

South Africa
Submitted 11/10/2020

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.

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