My First Menopause
To treat my endometriosis, I must go through the big change at 41—and then I'll go through it again later.
I feel special. Most women will have only one menopause, and they will hate it. I will have two, and when the second one comes, I will know what is coming.
I am having my extra menopause as a cure. I have endometriosis. Lots of women have it—178 million worldwide; at least 6 million in the United States—but I had never heard of it until I was diagnosed. The first sign was when I began to bloat. My mother, because she is a mother, thought it was ovarian cancer. I thought it was too much wheat, or too much dairy, or too much tea. Two ultrasounds and some keyhole surgery later, the consultant arrived in the recovery room. Good news. It's not cancer, but it is Stage IV endometriosis. I'm not sure where I found the presence of mind or even any mind at all, but I managed to ask, "How many stages are there?" He smiled laconically. "Four."
Later, he gave a much clearer description of the state of my body: "Your abdomen," he said, "is a fiery furnace."
Every month, for at least 10 years, some of the endometrial lining of my womb has, rather than being discharged as a period, gone for a wander around the rest of my body. At various times, it has turned into scar tissue that has attached itself to my bowel; glued my uterus to my rectum; and invaded my pelvis. It has become cysts—chocolate cysts, as the dark-colored endometrial cysts are sweetly named—on each ovary. And every month, all those dozens of little colonies of scar tissue (known as adhesions) have bled in sympathy when I menstruate. Like millions of women, I thought painful periods and prescription-strength painkillers were normal. But it isn't.
Scientists don't know for sure what causes endometriosis, possibly because as recently as 30 years ago, the disease only merited two pages in one medical textbook, according to Felice Petraglia, who edits the Journal of Endometriosis. They know that estrogen is involved. They think that prostaglandins—compounds derived from food-based fatty acids that can cause inflammation of endometrial adhesions (all those outposts of scar tissue)—cause the pain. Petraglia estimatesthat there about five hypotheses for every question about the disease. And there are plenty of questions. Is it caused by genetics? Is it our environment? Are dioxins to blame? Is it the number of cases increasing? Is it increasing because women are delaying childbirth and having more periods, thus overdosing on estrogen?
All that is known for sure is that endometriosis is endemic and that it cannot be cured. Management is the best hope. This makes for treatments that are, if I am being polite, based on trial and error. If I am feeling less generous, they are shots in the dark. Most women will have a combination of surgery (to laser off or cut out the adhesions) and/or drugs. My consultant didn't want to operate in a fiery furnace, preferring to calm down angry adhesions. So I took the drugs. Leuoprorelin, suggested to me "because it requires a thinner needle," is one of several hormone analogues, a standard treatment for endometriosis for the last three decades. (New drugs are rare.) Leuprorelin switches off the estrogen that feeds endometriosis, soothing the prostaglandin-inflamed adhesions. It also puts me, at the age of 41, into full-blown menopause. You may be lucky, said my doctor. Some women have no side effects. And don't worry. This one doesn't put on weight.
He was right about that, though perhaps because being diseased made me into a gym addict. It has also given me a 40 percent chance of being infertile. But I am lucky, in a way. And my diagnosis only took two years, when the average is 10. Endometriosis is notoriously difficult to diagnose because the symptoms are perverse. A woman with mild endometriosis can be in an agony for days every month (or every day for every month); women with the severe kind can have hardly any pain at all, like me.
That I do know. But the rest of it, the destabilizing, depressing, enraging side effects? They are as mysterious as the disease itself. Research into endometriosis is as scanty as funding. The Endometriosis Association has collected figures: Multiple sclerosis gets $463 funding per sufferer; endometriosis gets $2.63. So if I want a remedy for to the hot flashes that make me feel desperate to run into my freezer? Something that can heal me without crushing my libido? If I want a treatment that can guarantee, as this one can't, that endo won't recur in a year? Well, I will have to wait.
Petraglia thinks hormone treatments like mine are primitive. They have been in use for 20 years, despite the side effects. He avoids them when he can and waits for new drugs that women won't hate so much. I have hated mine, though it is nearly over and I feel as if I am emerging from something. At my last appointment, I asked my doctor how much relief this menopause had earned me. I wanted to know whether the wreckage was worth it. If I'm lucky, he said, maybe a year. Endometriosis will come back, because it always does.
Rose George is the author of The Big Necessity: The Unmentionable World of Human Waste and Why it Matters.
Photograph by Hemera/Thinkstock Images.