I write a lot about my fibromyalgia and chronic pain, but long before I was diagnosed with those issues I suffered a different kind of chronic pain. And it was the first of several times I have had to convince doctors that there was something wrong with me. Really wrong with me. Endometriosis is somewhat of a hidden disease, since it coincides with a woman’s monthly menstrual cycle and will often be written off as severe PMS or dysmenorrhea. But here is the definition, from the Office of Women’s Health:
“Endometriosis happens when the lining of the uterus (womb) grows outside of the uterus. It may affect more than 11% of American women between 15 and 44.1 It is especially common among women in their 30s and 40s.”
Every month for years – decades even – I suffered debilitating pain from endometriosis. Much like my fibromyalgia and neck issues, it took quite some time to diagnose. March has been Endometriosis Awareness Month, March 3-9 was Endometriosis Awareness Week, and finally March 25 is Endometriosis Awareness Day. I would like to do my part to share my story and help raise awareness and understanding of this condition, which many are not familiar with or, even worse, just think is “bad menstrual cramps.”
“Sometimes the strongest women are the ones who love beyond all faults, cry behind closed doors, and fight battles that nobody knows about.” ~ Unknown
My story begins about 25 years ago, when I was in my mid-20s. It started with the worst menstrual cramps ever, but it was so much more than that.
- I would have these sharp, stabbing pains in my abdomen. I later discovered this to be from the endometrial tissue outside of my uterus bursting each month as it filled with blood and then had nowhere to go.
- I had severe lower back pain to the point my legs would go numb – usually one or the other, not both at once.
- I also experienced: Painful intercourse; painful bloating and constipation; and painful urination.
I would often sleep with a heating pad both on my stomach and back, curled up in a fetal position, to try to ease the pain. I sought out help from my doctor for this, but because the symptoms weren’t constant, it was hard to diagnose. She ordered an upper GI, a lower GI, and an ultra-sound. Nothing unusual came back. She sent me to the ER once to be examined for appendicitis or any other explanation. Again, nothing. By now she suspected that it was endometriosis, but at the time the only way to diagnose it was to have surgery, so that was the last resort.
After several tests and still no answers, I can remember the day I was convinced it was endo. I was in a bookstore and was looking at a book called WomenCare by Linda Madaras and Dr. Jane Patterson – keep in mind this was back before the internet, so libraries and book stores were your best sources for information. I flipped to the pages that described the symptoms and as I read them I just knew – causing me to have an anxiety attack in the store!
The hormone therapy my doctor had me trying wasn’t giving me any relief. She wanted to see me again when I was experiencing the pain. I went to see her shortly after buying the book, and told her I was convinced that is what it was. Thankfully, she had an opening that week for surgery. That was March, 1992.
After my laparoscopy, my doctor told that me there was tissue found all over my back muscles and both ovaries were bound down, explaining the severe back pain. That surgery provided several years of relief. While this condition can lead to infertility for some, I was fortunate to have two healthy children a few years after my surgery. But after the birth of my second child while having my tubes tied, I was told there was evidence of more endometrial tissue and one of my ovaries was quite a bit smaller than the other. I hadn’t been experiencing the pain, since pregnancy suppresses the hormonal reactions, but it would come back.
Twenty years after the first surgery, after suffering and trying various solutions – hormone therapy and endometrial ablation – I finally had a hysterectomy in July, 2012. Given the nature of endometriosis and the effect of hormones, a partial hysterectomy wasn’t an option for me, so the result was pain relief, along with early onset menopause and more hormone therapy. I am not sure I would choose that option again, but there’s no going back now. But every one of these “treatments” has one thing in common: they treated the symptoms and were not a cure.
While no two stories are alike and I can’t compare my pain to anyone else’s pain, we can find comfort in knowledge, compassion, and understanding. If you suspect you have endometriosis, I urge you to do your research and find a doctor who believes you, is willing to work with you, and will help you find a treatment that is best for you. Here are a few resources:
- National Institute of Health
- Office of Women’s Health
- Mayo Clinic
- The Endometriosis Foundation of America
- The Endometriosis Association
I often wonder why I have had these conditions that are difficult to diagnose, somewhat hidden, chronic, and most importantly, are they related? Perhaps part of the reason is so that I can share my experiences with others, to help raise awareness, and give a voice to some very debilitating diseases. We have to work with the tools we are given in life, like using lemons to make lemonade.
Have you had an experience similar to mine? I would love to hear your story.