I’m writing to you about pain. And not just any pain, but pain some people may say is normal: period pain.
Severe period pain isn’t normal, and it took me over 20 years to learn that. When I was 35 years old, I found out I had endometriosis, a disease not easily diagnosed and often missed by medical professionals.
During my teenage years, I had very bad period cramps, but was told by friends, family, and doctors that it was just “part of being a woman.” I would miss some school every few months or have to go to the nurse and ask for ibuprofen. Friends would comment on how pale I looked when I was doubled over from the pain, and other kids would whisper and snicker.
In my 20s, the pain worsened. Not only did I have cramps, but my lower back and legs hurt. I was bloated and looked like I was six months pregnant, and bowel movements began to feel like broken glass was sliding through my intestines. I started to miss a lot of work every month. My periods were incredibly heavy and lasted 7 to 10 days. Over-the-counter (OTC) medication didn’t help. My physicians all advised me that it was normal; some women just had it harder than others.
Life wasn’t much different in my early 30s, except that my pain continued to worsen. My doctor and gynecologist didn’t seem concerned. One doctor even granted me a revolving door of prescription painkillers since OTC medications didn’t work. My work had threatened disciplinary action because I was missing one to two days every month during my period or leaving early to go home. I cancelled dates due to the symptoms, and heard on more than one occasion that I was faking it. Or worse, people told me it was all in my head, it was psychosomatic, or I was a hypochondriac.
My quality of life for several days each month was nonexistent. When I was 35, I went in for surgery to remove a dermoid cyst that was found on my ovary. Lo and behold, once my surgeon opened me up, he found endometriosis lesions and scar tissue all throughout my pelvic cavity. He removed all that he could. I felt shocked, angry, amazed, but most importantly, I felt vindicated.
Eighteen months later, my pain returned with a vengeance. After six months of imaging studies and specialist visits, I had a second surgery. The endometriosis had returned. My surgeon excised it once more and my symptoms have been mostly manageable since.
I went through 20 years of pain, of feeling brushed off, belittled, and full of self-doubt. The entire time, the endometriosis grew, festered, worsened, and tormented me. Twenty years.
Since my diagnosis, I’ve made it my passion and purpose to spread awareness about endometriosis. My friends and family are fully aware of the illness and its symptoms, and they send friends and loved ones to me to ask questions. I read everything I can about it, talk to my gynecologist often, write about it on my blog, and host a support group.
My life is now better, not only because my pain has a name, but because of the people it has introduced into my life. I can support women who suffer with this pain, be supported by those same women when I need it, and reach out to friends, family, and strangers to raise awareness. My life is richer for it.
Why am I writing all of this to you today? I don’t want another woman to endure 20 years like I did. One in 10 women worldwide suffer from endometriosis, and it can take up to 10 years for a woman to receive her diagnosis. That is far too long.
If you or someone you know is going through something similar, please continue to push for answers. Keep track of your symptoms (yes, all of them) and your periods. Don’t let anyone tell you “it’s not possible” or “it’s all in your head.” Or, my favorite: “It’s normal!”
Go for second or third or fourth opinions. Research, research, research. Insist on surgery with a qualified physician. Endometriosis is only diagnosable through visualization and biopsy. Ask questions. Bring copies of studies or examples to your doctor visits. Bring a list of questions and write down the answers. And most importantly, find support. You are not alone in this.
And if you ever need someone to talk to, I am right here.
May you find vindication.
Lisa Howard is a 30-something happy-go-lucky California girl who lives with her husband and cat in beautiful San Diego. She passionately runs the Bloomin’ Uterus blog and endometriosis support group. When she’s not raising awareness about endometriosis, she’s working at a law firm, cuddling on the couch, camping, hiding behind her 35mm camera, getting lost on desert backroads, or staffing a fire lookout tower.