Abnormal, painful, heavy and/or irregular menstruation.
Intense abdominal pain and cramping outside of period.
Fatigue, bloating, nausea.
These are the vague symptoms you will find if you Google endometriosis.
Endometriosis occurs when the endometrium tissue lining the uterus is found around the organs, pelvis and other areas of the body instead of being shed during monthly menses. This causes scar tissue, chronic debilitating pain, mood swings, anxiety, depression, infertility, body image issues just to name a few symptoms. No one brings up night sweats, blood clots, or nausea. How about chest pain, shortness of breath, rapid heartbeat and dizziness. I bet you didn’t know that knee pain, back pain, certain food intolerances, and vitamin deficiencies are also associated with endometriosis.
Many women (including myself) suffer in silence and the usual timeframe for diagnosis is 10 years, as it is difficult to detect. Endometriosis is incurable.
No one tells you how it happens, about the days you will cry because you are in intense pain or how many times you will have to call in “sick” to work with no real explanation of what the heck is going on with you. I am constantly faced with physical pains that I can’t control even with the strongest painkillers.
I can date my symptoms back ten years ago. I was only thirteen and had to make an appointment with a gynecologist. While I won’t mention this well-known doctor’s name, she brushed it off saying, “It was just a part of becoming a woman.”‘ Uh, yikes ok.
So I went on accepting this as my truth. Accepting the days of sitting in class pretending I felt okay that extended well into my working years. Calling in sick makes me feel guilty because my boss or co-workers don’t always understand what I’m going through and I often think I’m letting them down.
As the years went by, sometimes I would mention it here and there to doctors and they would act nonchalant as if living with this pain and discomfort was something I could get by with.
The final straw was when my previous doctor told me I was ovulating and it would pass. When I insisted differently, she suggested we change my birth control. Not only would this wreak hormonal havoc on my body, but I also knew it wasn’t the answer. So I stood up for myself. I said no.
I kicked her to the curb and demanded she refer me elsewhere.
I couldn’t do it anymore.
So after countless dollars spent on wasted doctor’s appointments, I saw a leading physician specializing in endometriosis. She suggested I have a laparoscopic procedure because she was sure I had endo.
I was overwhelmed. After I stopped ugly crying, I realized I was relieved. Finally. Vindication. Confirmation. I am believed.
I told a select few people.
What will you do? Make sure you do it. Are you going to do it? I don’t think you’ll do it. Please do it. Have you tried yoga? Have you considered meditation? Have you tried not eating dairy? How about nutrition? Medication is bad for the body and you’re an addict. All those chemicals. You can’t take that. What are you going to take instead? Can you have babies? Are you infertile? You should have a baby. You should start having babies. Why aren’t you having babies? Are you better? We can’t wait for you to feel better —to get back to normal.
Normal is now tiredness. Exhaustion. It’s being slow. It’s feeling slow. Withdrawn. Feeling sick. I am sick. Always keeping it secret. F. Feeling small. Thinking about it. Thinking about pain. Always thinking about my body. Your body. Assessing every twinge, every tug, every pull, every ache. Waiting. Holding your breath and counting. Waiting for it to stop. To get worse. To come back again.
Two months ago today, I was first diagnosed and had a laparoscopy. My endo is so severe it caused organs to shift and tilt.
I am now faced with the harsh truth that the physical pain is paired with the emotional pain of the possibility of not being able to carry a child, my first surgery will probably not be my last and I am on a medication that has kicked my body into early menopause.
While the road ahead is difficult, I know had I not been an advocate for myself while sitting in a small cold exam room with nothing but a gown the quality of a cheap paper towel, I would still be suffering in silence.
Fortunately, I have learned the capacity of my strength and fortitude due to this disease.
If you’re a woman suffering from chronic, mystery pain that doctors are just shrugging their shoulders at, I hope you are inspired to be an advocate for yourself as well.