I’m awake, again. The bedside clock reads 2:14 a.m. and I can’t get back to sleep. The two ibuprofen I took at bedtime have worn off, and the deep, aching pelvic pain I’ve been experiencing for the last three days, which was only dulled by the painkillers, has now crept across my lower back and down the insides of my thighs. The heating pad I fell asleep with has fallen to the floor, but it had shut itself off hours ago. I throw the covers back and sit up. It’s going to be another long night.
I hesitate to stand because I’m afraid I might leak. My periods have become so heavy that even with an overnight pad and a super-plus tampon, I can’t make it through the night. I waddle my way to the bathroom and sit on the toilet. After removing the pad and tampon, I sit there, letting the blood stream directly into the toilet. I know I should try to get back to sleep, so I pop a couple more ibuprofen, grab a clean pair of underwear from the bathroom stash nearby and change the pad and tampon. I put the stained underwear in the sink with cold water to soak. I grab the heating pad, put it on “high” and climb back into bed, waiting for the ibuprofen to kick in.
Five a.m. comes way too early. After the alarm goes off, I remind myself I have a full day of teaching ahead. I force myself out of bed, take a couple more ibuprofen, and get in the shower. The shower scene from the movie Psycho crosses my mind as I see the blood dripping between my feet and washing down the drain. It’s a good thing the car has a 220 outlet; at least I can use the heating pad on the way to work.
I’m just doing what the doctor said to do: 400 milligrams of ibuprofen every two hours until the pain is gone. Which is fine, except it will be another two days before the pain lessens, and another three days until my period is over. I’m taking way more pills than I want to, but I can’t think of another solution, and the doctor said this is the best plan. I don’t think he takes me seriously.
I’ve suffered from endometriosis (endo) since I was a teenager. Most women start their periods at about age 12, but mine didn’t start until 14, and after my first period it was another year before I had another one. I didn‘t know I had endo, and within a year my periods became episodes that lasted way beyond the five days of “light-to-moderate flow” that my mom told me to expect. And pelvic pain was off the charts. “When you get cramps, just do some light exercise, and they’ll go away,” my gym teacher said. That‘s a laugh.
By the time I was 18, I knew what I was suffering was abnormal, but I didn’t know it was a condition; my primary care doctor put me on birth control pills to help regulate my cycle but still didn’t name the problem. I was on birth control until I was 26, a year after I got married. When I stopped taking the pills because we wanted to try to have children, I found out I was sterile. There was no reason to use birth control anymore, and the one I took had side effects, so I stopped taking it. In hindsight, that was a mistake.
My primary care doctor, an older gentleman in his 50s, rarely saw me for my women’s health exam, and the LPN who gave me my pelvic exams didn’t discuss my symptoms with me. She just did the Pap Smear and reported the results. It felt like nobody at the doctor’s office listened to me, even after I explained what I was experiencing. Nobody offered anything more than pain management as a treatment plan, so I just assumed there was nothing to be done and I was doomed to suffer.
Over the next 20 years, endo wreaked havoc on my life. By the time I was 30, I had about one week a month when I wasn’t dealing with, as I called it, “PMS, MS, and the aftermath.” PMS was horrible; I was on an emotional rollercoaster. I lashed out at those around me, then wondered what alien had possessed my mouth and where the dark thoughts had come from. I couldn’t go on trips or be as active as I wanted. I can’t count the number of family gatherings I missed. When I began to take sick days for the first few days of my period each month, I knew things were getting bad. Still, my doctor never mentioned endometriosis, much less that there were treatment options other than pain killers.
It wasn’t until I saw a specialist when I was 50 that I learned that endo can be controlled and even stopped. When I told my new doctor what I had been experiencing, she put her arm around me and told me I never had to live like that again. She offered me an IUD (intra-uterine device). I thought they were only for birth control! I didn’t know IUDs were used for older women, so I was amazed when the doctor told me that IUDs are frequently used to control endometriosis, no matter what the age. A week later she installed an IUD. When I came back to the office six months afterward for a checkup, I broke down in tears. I hadn’t had a period for almost half a year, and the pain was gone. “Thank you for giving me my life back,” I said. I always cry when I’m grateful.
My current specialist says that endo can start even before menstruation begins, which makes endo so insidious. Instead of growing and shedding the endometrial lining each month like everyone else with a normal period, tissue had grown outside my uterus, then turned to scars. Every month, the cycle got longer, the periods got heavier, and the effects on my body became permanent. Endo does not show up in X-rays or on a sonogram, so even now I still don’t know what stage it is. All I know is, because of a sympathetic doctor, an IUD and menopause, I’m pain free. I still feel relief when I think back on my experience.
One question I really hate is, “do you have kids?” because I don’t know how to answer it. “No, endo made me sterile,” doesn’t seem to fit most social occasions. “God never blessed me with children” also doesn’t convey the anger I feel at being denied such a wonderful gift. Childbirth, something people take for granted, is something I have wanted fervently all my life. And endo stole it from me. In fact, endo stole much of my life. I’m also angry because the treatment I received in my 50s could have been offered much sooner. If I had been more vocal about my issues, or if the doctor or LPN had been more aware, I could have lived a mostly normal life.
If you’re reading this and you are experiencing the same thing, do something about it. Get pelvic exams regularly, ask to see a gynecological specialist, and be honest about what you are going through. Most modern women’s health professionals have an arsenal of treatments they can offer you. And don’t let them off the hook if all they offer is pain management. More than 11 percent of women of reproductive age are victims of this disease, but it can be caught before it causes problems with painful sex (dyspareunia) or infertility. You don’t have to live like this, and you are not alone. I know it’s very personal, but I’m hoping that if I can talk about it in this article, it will give someone the courage to speak up. I wish I had.
