Monday Medical News: What It Really Means to Have Endo

This really isn’t a news article but a wonderful essay on what it really means to have endometriosis!  I was skeptical at first as the essay is written by a man but his words are compassionate and honest and really shed light on the impact of the disease on daily life!  This essay was written by Andrew Cook and published on Endometriosis Zone.

What It Really Means to Have Endometriosis

Endometriosis - What is it, really? It can be difficult for even the most articulate patient to effectively communicate how devastating endometriosis can be to one’s life, including the ability to function.

Endometriosis by definition is a disease process where the inside lining of the uterus, the endometrium, flows back up inside of the body around the ovaries and bowel where it implants and begins to grow. Another theory states that the disease can form as a result of what is called coelomic metaplasia. Coelomic cells are those formed as a fetus, and metaplasia means one cell-type turns into another cell-type. In other words, beginning in adulthood some of the primitive cells turn into endometriosis.

Some of the information can sound rather dry and therefore fails to convey what it is like for a woman to have this disease and how it truly impacts her family, her career, her sex life, and her ability to function in very basic ways.

In reality, this disease can feel like having tens or even hundreds of excruciatingly painful blisters covering the inside of the pelvis. Infertility and pelvic pain are the two most common symptoms of endometriosis.

For patients who are lucky, pain lasts a couple of days during their period, and in the worst cases the pain is 24/7. The dichotomy between how endometriosis looks (well on the outside) verses how it is experienced (excruciating pain), can cause even well-meaning people to doubt the severity of their pain.

Most women begin to have pain in their teenage years, sometimes even in junior high school. While similar in timing, this pain is completely different than normal menstrual cramps. It is not uncommon for girls with endometriosis to miss a couple of days of school each month from cyclic pain. It tends to exceed the level of pain patients experience after major surgery.

A lack of awareness of this disease can leave these girls without a correct diagnosis and, without support from their physicians. This can lead to a lack of appropriate treatment for the pain, as well as invalidation of the patient’s situation. Her family is then led to believe that psychological issues drive the severity of her pain.

This tragic situation can be compared to being held prisoner and tortured daily by her own body, with no one who fully understands her situation or who can effectively help her.

The symptoms usually progress as she matures into a young woman. Both the severity and duration of the pain typically increase. Initially most days each month are pain-free, but the number slowly decreases until there are a greater number of non-functioning pain days. The unpredictability of the increasing number of pain days makes it challenging to maintain a functional life. It becomes even more difficult to make plans for a future date as she begins to ask: will it be a pain day? If so, she will not be able to follow through on her commitment for the activity.

As a disease, endometriosis can take away many additional aspects of a normal life. Mothers cannot reliably meet the needs of their children when the pain is too severe to function. Wives try to push through the pain to be intimate with their husbands, but eventually it becomes too intense to continue. Grinding fatigue as severe as that experienced with advance cancer is present in most cases. Bloating, moodiness, and bladder and bowel issues are common as well.

Feeling like a vibrant desirable woman goes away. Acting like the loving compassionate woman, mother and partner that she truly is becomes more and more difficult. The stress on family relationships is common and real.

Even at this stage, most women fight the disease, refusing to let it completely take over their life. Yet, in public, most would have no idea of the devastation they are dealing with. Often they get up, put on a brave face and do their best to live a normal life.

The medical definition of endometriosis does not even begin to describe the reality of what it means to have endometriosis. While it can be frustrating if you have a loved one, friend or co-worker who suffers from endometriosis, please remember to treat them with respect and compassion.

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