Imagine you’re 33 years old and living your best life. You’ve left the uncertainties of your 20’s behind, so you have at least an inkling about who you are and what you want to do with your life. Imagine you have an incredible, loving partner who supports your endeavors and wants you to have everything you strive for. Imagine, too, that you’re beginning to think about having a family and you’re excited to experience pregnancy, childbirth and parenting for the first time. Imagine you have a lot of fun along the way trying to get pregnant, as your partner always make sure “she comes first” and tells you how much he loves you and your body every day, multiple times a day.
Imagine everything is going pretty well—until it isn’t.
This is my story, and it’s still painful to recount—though I suppose the pangs have dulled some. At 33, I felt very satisfied with my life. If I had any complaint at all, it was that I had put on some stubborn weight, but I wasn’t even that concerned about it because I felt loved and desired by my partner. One day, though, I started having pain in my abdomen, the kind of pain that knocks the air out of you and doubles you over. It started one day in the fall the year before I turned 34, and persisted daily until June of the next year. The sharp pain wasn’t constant, but happened at least daily and sometimes more frequently throughout the day.
At first, there didn’t seem to be any rhyme or reason. The pain would just strike from out of the blue. It didn’t seem to be associated with my menstrual cycles because it occurred throughout the length of each month, and it also didn’t seem to be digestive as it occurred throughout the day and night.
That started to change, though, and the pain would seem to increase after hearty meals. So, I reduced the amount I ate at each meal, spreading my food over 6-8 smaller snacks throughout the day. Then it started every time I ate no matter how much, so like a Pavlovian pooch, I reduced my food intake to barely anything to avoid the pain.
In the spring, the pain with intercourse started. Not every time—but again, often enough that I become timid. Of course my partner didn’t want to cause me pain, so it made him timid, too, when it came to intercourse. We adjusted, focusing on all the other ways we provided pleasure to each other and when we did engage in PIV, it was slow and gentle. Sexy in its own way, but not our norm.
Throughout this time, I’d been visiting specialists of every kind. None could seem to pinpoint the source of the pain. About the same time that I was referred to a specialist at Johns Hopkins, a reproductive endocrinologist who’d had some success with painful intercourse, I also started experiencing pain with orgasm. Avoiding and altering how we had intercourse was one thing—we could adjust and still be intimate and sexy. Avoiding orgasm was another thing altogether, and I’m sure you’ll understand when I tell you how miserable I’d become avoiding food and pleasure. I was deeply depressed by the time I saw the doctor at Hopkins, but luckily that was the beginning of finding answers.
Endometriosis affects 1 in 10 women and is responsible for 30-50% of infertility in people with female reproductive systems. The condition is painful, particularly during menstruation, and can be the cause of pain with penetrative sex. With endometriosis, the uterine lining that sheds during menstruation also grows outside of the uterus, on other organs and tissues in your abdomen and pelvic area. Essentially, you are internally bleeding once per month.
It took more than my visits to Hopkins to be diagnosed. In fact, after two long surgeries in which they removed adhesions (or scar tissue) from my abdomen and pelvis, the doctor admitted that while he suspected endometriosis as the culprit, he’d not visually seen any evidence of it during the operations. It wasn’t until a decade later when I developed fibroids which necessitated a hysterectomy that I got the definitive diagnosis. Both endometriosis (uterine tissue outside the uterus) as well as adenomyosis (uterine tissue growing through the uterine wall) were found when they removed my uterus.
But at Hopkins I finally started to understand that the pain I’d endured since early adolescence was not just “what a woman must endure.” I’d been told all my life that the severe cramping I experienced—cramps that would make it nearly impossible to do anything for 2-3 days minimum each month —was normal. Two surgeries removing scar tissues that bound my internal organs together proved that something was very wrong with my guts, and the absence of pain for a few years thereafter told me that those adhesions and my menstrual cycle were somehow related.
At 44, when I was finally diagnosed, I got mad. Removing my uterus has helped, tremendously, but it hasn’t cured me. I still have random bouts of severe abdominal pain. I fear that during those intervening years (and perhaps beyond?), the disease spread and more adhesions formed inside me. While those first two surgeries resulted in some relief, I learned that the surgery to remove adhesions can also, in turn, create more adhesions, and the only way to see if there are adhesions is to have surgery. It feels like I can’t win. I also got mad about how little is known about endometriosis and adenomyosis. Funding for research is sparse—as with many conditions that only affect those of us born with uteruses.
Additionally, I learned that I had been experiencing pain with intercourse throughout my adult life, and not just when it got bad enough to really get my attention in my early 30’s. I didn’t realize until the pain was absent how much pain I’d endured over the years because nearly every time I’d asked about it from my medical providers, I was told that was just how it is. They’d say that “yes, the cervix can be tender and you’ll have some pain with intercourse at times.” They’d say “pain goes hand in hand with pleasure when you’re a woman.” They’d reinforce the societal messages that it must just be all in my head, or that it really can’t be that bad, that I was just weak for describing it as excruciating because myriad women before me had suffered the same “normal” pain.
Chronic pain is debilitating. It robs you of enjoyment in the things many of us take for granted. It wears on you, and when you talk to medical providers about it, it makes you feel crazy when they tell you pain is normal if you were born with a uterus.
Chronic pain is also an invisible disability: people who deal with daily pain may look absolutely fine on the outside. In fact, many of us use our outer appearance, taking great care with grooming in order to try to feel better! It’s not helpful, however, when we are being vulnerable about what we live with each and every day to try to reassure us with a “…but you look great!” If we’ve opted to lift the veil and tell you about our experience, it’s because we’re hoping to find empathy and understanding which—while it doesn’t take the pain away—helps us to soldier on in the face of it. Many of us do persevere despite the pain because we have little opportunity to do anything else. We become actors, putting on a public face so we can engage in the world, and only those close to us understand a bit about what we regularly endure.
Finally, chronic pain affects all areas of quality of life, including sexuality. In my case, the pain directly affected my ability to enjoy penetration and orgasm. For others with different chronic pain conditions, there may not be a direct effect, but instead a more subtle one. One way to learn to live with persistent pain is to learn to numb yourself a bit, self-medicating with alcohol and other substances, or simply becoming so good at avoidance you tune out from being in your body. The problem is that if you’re numbing yourself from experiencing pain, it’s likely you’ll have difficulty experiencing pleasure, too. Plus, there is the unending exhaustion. It is unbelievably tiring to cope with pain on a regular basis. At times no matter how much my body is craving intimacy and sexual touch, I’m too exhausted to engage.
You can read more about endometriosis here and here.
