I have been sitting on this article for many years: it has taken this long for me to finally feel ready to metabolize such a delicate subject as the loss of my ability to be a mother. And even if I’m still feeling resistant to the idea of retracing my calvary, I have decided to do it to settle an intimate debt of sisterhood to all women, who I want to honor at any cost.
We’re talking about a disease that’s very common but virtually unknown. Not only to us laypeople, unfortunately, but to doctors themselves. Not only to general practitioners—if only that were so—but also to specialists, or rather gynecologists, both male and female, who should, really should, know everything about this disease that strikes 176 million women on this planet. One hundred and seventy-six million women. Conservative figures refer to 10% of the female population.
I am talking about endometriosis, a disease with a horrid name that just in itself makes you think of cold instruments and painful tests. It is a gynecological disease: tissue lining the endometrium (the internal wall of the uterus) is displaced and travels through the tubes to become attached to other organs (such as the ovaries, bladder, ureter, colon—even the pleurae), where it bleeds and forms scars, causing adhesions that in 60% of cases lead to unbearable pain during the menstrual cycle, and often even during sex.
Unbearable, in this case, really means unbearable. For years, my cycle was a time of non-living when I was numbedby in pain, and sometimes even beyond that—to a larval state of suffering that prevented me from remaining in reality. I would enter a state of torment that became everything I was. After a few years, I finally found a painkiller that worked. It took effect after a few hours, at the same time rendering me lifeless and prostrate. But it took away the screaming inside. The pain wasn’t only menstrual, but all over my body: my legs became two huge weights compressed by a tourniquet, my back and hips were painful in any position, standing upright was impossible, my body would swell up like a balloon, and gain one or two sizes, while my stomach throbbed with pain, sometimes to the point that I passed out. Fragmented digestion, constant diarrhea, a permanent feeling of weakness and, above all, an obliterated immune system. I discovered this aspect just recently when reading a splendid article by Gabrielle Jackson, which I have found very useful, including in an emotional sense. I was always getting hit by the flu, and people were a bit contemptuous of me, because of this. They thought I was faking it. They thought the problems were all psychosomatic. They thought I was a hypochondriac. They thought I was just a pain in the ass, even though I often pretended to feel much better than I really did.
Without any medical knowledge, I thought that each problem was a separate disorder, and I was ashamed of being so weak, fragile, sickly, sore, incapable of planning a life that involved dinners, birthdays, weddings, work commitments. And instead it was all caused by the same disease. All of it. In my case I had the additional problem of a nickel allergy (never diagnosed by a doctor; I had to work it out on my own), which caused me to lose my thyroid and to have another series of problems, now under control, but I will write about that in another post.
The only way to eliminate endometriosis is through surgical intervention; if done in time, it’s possible to have a normal life and to bear children. The problem is that it’s rarely diagnosed, or at least often not until ten years or so after it first emerges. In addition to ignorance, one of the reasons for this is that it’s difficult to see on an ultrasound, and the only way to identify it properly is to work it out from the symptoms: in other words, to listen to the patient, to palpate her abdomen and understand that her complaint requires further investigations: a blood test for tumor markers (CA-125) is sufficient, and if the values are high the disease will be seen as black on white through an MRI—the only test that reveals it clearly.
In my case, they could have worked it out from the abdominal pains that led them to remove a perfectly healthy appendix when I was fourteen years old, just as, soon after, the gynecologist whose care I was unfortunately under for the next twenty-five years should have known what it was, seeing as at fifteen I already had obvious symptoms. But after her, when I started wanting children that never arrived, it should have been caught by the expensive gynecologists specializing in infertility who examined me excessively to help me get pregnant, and who never hypothesized that I could have had this disease, although it is one of the most common causes of infertility for a woman (in up to 40% of cases). Not to mention my primary care doctor, also a gynecologist, who never considered this diagnosis even though every month I asked him for a medical certificate for my work. Altogether, there were about fifteen specialists: a remarkable plethora of people who had studied medicine and specialized in gynecology (thus a minimum of nine years of study) who, even when confronted with such an obvious case as mine, didn’t even mention this disease. This disease so rare that it strikes one hundred and seventy-six million women.
I could have even died at any time from intestinal blockage if I had not finally found the right gynecologist. Not even forty-five seconds into the visit, without my getting undressed, he exclaimed, “What! Yours is a very clear case of endometriosis!”, and one and a half months later, on 14 February 2009, I was admitted to hospital for the removal of my uterus and one ovary. The surgeon was younger than me, but eminent and at the forefront of his field—someone who justly deserves his position as haed physician attained through his skill and talent. His first words at the first post-operative visit were surprising and very harsh: “I want a list of all the doctors, specialists and otherwise, who examined you in the last thirty years. These people should stop practicing medicine.” Rarely have I felt such a strong sense of being “avenged” for an injustice, by then so ancient; and yet I wasn’t capable of making a list and denouncing anyone. I needed to close in on myself for a few years and cry over the pain I had experienced, to make it dissolve like watercolors, to forget all the torment. To better understand this disease, you can now read all about it on the internet; fortunately, there is more information and literature available now, so I won’t dwell any further on its content—I believe that I have, however, given an idea of the symptoms and effects.
Instead, what is important to me is a broad general reflection on why I experienced all this.
It’s not just a question of ignorance on the part of all these doctors. That would be too simple. The problem lies elsewhere: it’s about how a woman who complains is perceived, especially when it’s about her menstrual pain. Women don’t often meet with understanding about their pain: in the best of cases, only indifference, but more often hostility, and for two reasons: the first is that women are always thought to exaggerate their pain to make themselves victims and to exploit it, to mask their own “laziness” regarding work, whether domestic or as an employee. Therefore, there’s a tendency not to believe in the intensity of the pain, ever. The second is that there’s a subtle idea that women know how to, or rather must, bear their pain. Starting with my first gynecologist, the response from all my doctors was “What can you do?” As if the curse of thatarchaic God of the Old Testament in Genesis [“I will surely multiply your pain in childbearing; in pain you shall bring forth children. Gen. 3:16] has remained seared into our skin. That pain connected to childbirth that signifies a curse on everything connected to women’s fertility. Punished for generating.
This is the reason for my story today: let’s break away from this curse, right now. Let’s rebuff anyone who wants us to be debilitated and on top of that dissimulators. Let us always listen to our bodies, and let us reject a perspective that once again wants us subjugated, even to our own biology. Being a woman cannot be and must not be a calvary, but a joy of life, with a few bearable side effects. Whatever goes beyond that must be investigated—not accepted. Tell it to your friends, your daughters, your sisters, anyone. Utter this word of salvation, this link to paradise: endometriosis. Let’s make it as common as “migraine” or “tendinitis”.
I am publishing these words today, on Worldwide Endometriosis Day, so that women can think about their body as a splendid place in which it was devised that a new human being could be conceived−whether or not we experience it in the course of our life. This on its own is something that makes us extraordinary, and that cannot and should not represent pain.
Translated by Ellen McRae