5 Things That Make Endometriosis So Unique
Last updated: November 2021
I remember feeling so incredibly relieved when I received my diagnosis of endometriosis. Naively, I thought: "it's over". I knew going into it that excision surgery was not a cure for endometriosis, but I thought it would be an end to so many struggles I faced.
A different kind of struggle
The struggle of dealing with agonizing symptoms that appeared randomly, and having to explain to other's what was happening. To my family, to my friends, to my co-workers, and even to my doctors. I thought "once I receive this diagnosis once and for all-that burden is gone". The burden of educating everyone on your chronic condition, that is. But I was wrong. That burden did not go away. Rather, I was given a diagnosis (a name to describe my condition) that many misunderstood and misconstrued. A word that perfectly described my every feeling and symptom, yet did not translate to those who have not experienced it themselves.
I still was pressed with the task of educating my doctors, the ones who should have been providing the health education to me. Reminding them all, for the hundredth time, that "yes, endometriosis does cause bloating".
So what is it that makes endometriosis so unique?
For starters, it is an incurable illness with no known cause, no universal screening tool, no universal guideline of care, and no satisfactory treatment. Even the gold standard treatment, excision, has unattractive outcomes of reducing symptoms in 50% of endometriosis sufferers.
It is one of few diseases where practitioners do not even agree on the definition of the disease. Some state endometriosis is a condition that occurs when the endometrium, cells which line the uterus, are found outside the uterus. And some state it is a condition in which cells "similar" to those which line the uterus are found outside of the uterus. Neither researcher can agree on the definition of the disease, but both agree that it is a type of tissue found outside the uterus.
Given that endometriosis is, by definition, a condition occurring outside of the uterus, isn't it strange that one of the main treatment recommendations is a hysterectomy? It is very common to remove the uterus in hopes of treating endometriosis, but having understood the definition of the disease, it is easy to see how implausible and ineffective this treatment actually is.
While some may find relief of symptoms, such as heavy periods, once a hysterectomy is performed, it is not a sound treatment. Removing the uterus does not remove the remaining endometriosis lesions that are implanted in the rest of the body, and it does not stop the progression of the disease.
3. Dietary Recommendations
Another flaring irony specific to endometriosis is in regards to diet. Those with endometriosis typically have low iron, due to abnormally heavy periods. And yet, they are told to avoid red meat, a wonderful source of iron, due to red meat causing symptomatic flares.
Those with endometriosis are also told to eat a diet high in fruits and vegetables, when the extreme bloating that is associated with endometriosis often makes that near impossible. Endometriosis causes tremendous digestive symptoms such as food sensitivities, bloating, gas, diarrhea, constipation, reflux. Due to the chronic inflammatory nature of the disease, it can also cause secondary conditions such as IBS and SIBO.
Simply recommending a change in diet is often not satisfactory for endometriosis patients. A much better approach would be working with a dietitian and individualizing an anti-inflammatory diet.
Mentioned previously, excision surgery is the gold standard treatment for endometriosis. It is often recommended to primarily remove endometriosis, but to also remove adhesions that have formed due to the disease process.
One huge risk to this type of surgery is the formation of adhesions, and one can often find themselves in a cycle. Have surgery for adhesion removal - adhesions form- have surgery for adhesion removal- adhesions form and so on.
While there are numerous factors involved in adhesion formation, and strategies surgeons can follow to reduce adhesion formation, they are a direct consequence of excision surgery. There is greatest risk of adhesion formation from endometriosis itself, however, it is worth noting that adhesions will likely be part of one's endometriosis journey, one way or the other.
Perhaps one of the most daunting facts about endometriosis is just how little is known about it! It is known that 1 in 10 women have endometriosis, which translates to about 176 million women worldwide.
That is the same amount of women who have diabetes, and yet there is drastically less research for endometriosis compared to diabetes. Take a quick second and go to PubMed. Search "endometriosis", write down the number of results. Then search for "diabetes". Do you see the gaping difference? There is over 25x more research concerning diabetes than endometriosis.
And the effect does not stop there. That translates to poor patient outcomes, poor quality of life, poor insurance coverage and reimbursements, poor medical training, and poor awareness of the disease in the general public.
Learning more about endo
Endometriosis is so unique in all of the ways it is misunderstood: from its definition to its treatment. It is so incredibly pervasive in the lives of those who have it, yet so neglected in literature and in medicine. It's an invisible illness not because it cannot be seen, but because no one knows what to look for. Endometriosis may always be a unique disease, but it doesn't have to be so foreign if we'd only just learn a little more about it.
Do your endo symptoms ever cause you to feel socially awkward?
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