Sh*t I’m Afraid to Ask My Doctor

SH*T I’M AFRIAD TO ASK MY DOCTOR endometriosis

by cielle waters-umfleet

periods. ugh.

If you have them, you have them for a week every month for approximately 40 years, and it’s safe to say that most people don’t enjoy theirs. But what if your period had no way to leave your body and instead built up inside you? For an estimated 1 in 10 Americans who menstruate, this is a painful reality called endometriosis.

But for how common it is, relatively little is known about it, even among doctors. This makes finding a diagnosis and treatment plan difficult for those suffering the condition. The effects can be nearly debilitating in the worst cases, yet many of us would struggle to name one person close to us whom we knew had the disease. So, what is endometriosis? Why is it so hard to get a diagnosis? And what can we do about it?

what is it?

Endometriosis, or endo for short, is a condition in which tissue similar to the endometrium, the inner lining of the uterus (A.K.A. your period while it’s still inside you), grows outside of the uterus, typically on the pelvic floor. This endometrium-like tissue is commonly found on the ovaries, fallopian tubes, bladder, and intestines, although in rare cases it can be found anywhere in the body. Like the endometrium, this tissue thickens and “sheds” with the menstrual cycle; however, because it doesn’t have a vagina to exit from, the tissue simply builds up over time, eventually leading to internal cysts and scarring.

The most common symptoms are heavy, painful periods; pain during sex and relieving oneself; and infertility. Many sufferers will also experience symptoms similar to a bad period, such as bloating, nausea, and digestive problems. While most people with the disease will have some symptoms, it’s important to note that pain experienced does not necessarily correspond with the severity of the disease. People who have relatively little endometriosis tissue might deal with far more pain than someone who is in the most advanced stages of the disease, and some people might go years without ever knowing they have it! Occasionally patients discover they have the disease inside a fertility clinic after failing to conceive.

Scientists still aren’t sure how endometriosis begins, but most explanations boil down to this: Somehow, regular endometrial cells escape the uterus, either through a surgical wound or the small gap between the fallopian tubes and ovaries (DYK? Ovaries are not directly connected to the fallopian tubes!) and lodge in the surrounding area, where they then morph into diseased tissue. A genetic component also appears to be at play, as the disease often runs in families. Whatever the case, the onset is spontaneous, meaning it isn’t a result of one’s lifestyle and it could happen to anyone.

could I have it?

As mentioned earlier, roughly 1 in 10 menstruating Americans are estimated to have endo, so it’s not uncommon by any measure. Still, despite its frequent occurrence, it can be difficult to diagnose. Many of the symptoms of endometriosis, such as severe menstrual pain, pain during intercourse, and bowel troubles, are also symptoms of other diseases, all of which are worth getting checked out, of course. Because of that, doctors will often misdiagnose endometriosis as conditions like IBS, PCOS, or vaginismus (which, BTW, endo sufferers often also have), prolonging necessary treatment. In addition, many doctors aren’t knowledgeable about endometriosis and will dismiss patient complaints outright.

If you suspect you might have endo (or just if something’s up down there), it would be wise to find a gynecologist or specialist who sees cases frequently. They would recognize the symptoms more easily than a general practitioner. At the

appointment, your doctor will ask you to describe your symptoms, their severity, and when you experience them. Unlike some conditions, endo symptoms usually change with one’s menstrual cycle. Typically, the days closest to and during one’s period are the worst, and symptoms ease for the rest of the month. If your doctor then suspects you might have endometriosis, they will do a pelvic exam, which involves feeling your lower belly and inside your vagina. This allows the doctor to feel for areas of swelling and where the endometrial-like tissue may have built up. In order to make a definitive diagnosis, though, the doctor will have to take a biopsy. In a procedure called laparoscopy, the doctor will insert a long, thin tube under the skin and collect tissue samples to examine under a microscope. After that, you’ll know.

To prepare for the appointment, endo veterans have some suggestions. First, write down your symptoms, and be detailed! Make a journal of what you experience and when so you can have something to refer back to when the time comes. This also makes it much more difficult for a doctor to minimize or dismiss your symptoms. Some degree of period pain is a reality for most who menstruate, but when it becomes debilitating, it’s highly concerning. Next, it may help to bring a trusted person to the appointment, such as a close friend or relative who sees you often. Having someone to reaffirm your symptoms to the doctor goes a long way, plus they can help you digest difficult information from your doctor. But most importantly, survivors stress advocating for yourself. As common as the disease is and as obvious as the signs can be, far too many doctors dismiss symptoms and refuse to perform further testing, as if endometriosis could be controlled with a few extra Midol. Speak up, ask questions, and request further testing and treatment. Your doctor may have an MD, but YOU are the foremost expert on your body.

I have it... now what?

If your test comes back positive, unfortunately, there is currently no cure for endo. That being said, a range of treatment options are available. Some people find birth control and over-the-counter pain meds to be enough to function. Others may opt for stronger methods, such as artificially inducing menopause (something that can be easily reversed if a sufferer wants kids). Often, though, patients need surgery to remove the endometriosis tissue build-up. This can be done by excising tissue with surgical sharps or through an ablation, which is a controlled burn of tissue.

One of the biggest factors to consider with endometriosis treatment is fertility, or moreover, infertility. Endo is one of the leading causes of anatomically-female infertility, and while people with endo can and do carry pregnancies, it can be risky. Endo causes infertility in multiple ways. Endometriosis tissue can produce its own sex hormones, messing with the body’s natural balance and cycle. It also causes swelling in the reproductive tract, which could make it nearly impossible for sperm and eggs to meet and implant. If having kids is part of your life plan, your doctor will help you make the right decisions so as to give you the best chance to conceive and carry.

conclusion

Despite the severity of symptoms, one of the biggest challenges for people living with endo is a lack of awareness, both from doctors and the general public. Even though it’s relatively common among people who menstruate (not to mention hard to ignore), it takes an average of seven years for a typical sufferer to receive an accurate diagnosis, all the while having their disease progress. And medical knowledge about the disease remains limited. In fact, the stages of endo were originally created to reflect a patient’s likelihood of becoming infertile, not how impactful symptoms would be in daily life.

What we can do to change this is listen, learn, and stand up for ourselves and others. Every endo journey is unique, and every story is valid. Chronic pelvic pain isn’t normal, and doctors shouldn’t write it off just because it centers around a uterus. By learning and educating, we can help more people receive timely diagnoses, critical in preventing lasting organ damage from endometriosis tissue.