What It Really Means to Have Endometriosis

Almost 2 months ago in my search for support with endo I came across the website www.weareendo.org . I read about a research study being done by a company who was looking for volunteers. All you had to do was submit a DNA sample and release your medical records pertaining to your endo diagnosis. I decided to participate. The company is studying the DNA samples of thousands of women with endo to determine if there are genetic precursors for this disease. So far their research is pointing to yes. They are hoping with their findings they will be able to create a test to help diagnose endo and maybe even someday a cure. Right now the only way to diagnose endo is through laproscopy, which is a a non-invasive surgery.

Anyhow, a few weeks ago I discovered the company had made a facebook page and joined it. They post updates on conferences and research related to endo and yesterday they posted a blog entry from a doctor who is a well known specialist on endometriosis. When I read his (yes that's right, a male doctor!)post on what it really means to have endometriosis I had tears in my eyes. He got it. I felt like for once there is someone out there that doesn't have this disease who gets it, who can put into words what I cannot. Hopefully I'm not breaking any laws, but I want to share his post because it describes the effect this disease has on a person so well.

What It Really Means to Have Endometriosis

In last week’s post (“What is endometriosis?”), I said that 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. Quite frankly a lot of this medical stuff can be quite dry and boring and does not convey what it is like for a woman to have this disease and how it truly impacts her life, her family, her career, her sex life, and her ability to live her life in very basic ways.
In reality, this disease can be like having tens or hundreds of excruciatingly painful blisters covering the inside of the pelvis. Infertility and pelvic pain are the two most common symptoms of endometriosis.

Patients with endometriosis can experience horrific pain – for the lucky ones it lasts just a couple of days during their period, and in the worst cases the pain is 24/7. The dichotomy between the way women with endometriosis look well on the outside but are experiencing excruciating pain internally 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 starting in junior high school. While similar in timing, this pain is completely different than normal menstrual cramps. It is not uncommon for these girls to miss a couple of days of school each month from cyclic pain that can 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 support from their physicians. This can lead to a lack of appropriate treatment for the pain and invalidation of the patient’s situation. Her family is now led to believe that psychological issues drive the severity of her pain.

In this tragic situation, she is effectively held prisoner and tortured by her own body in broad daylight, 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 of these days 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 increasingly difficult to make plans for a future date as it becomes more likely that it will be a pain day and 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 the pain 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 is long since gone. 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. You would most likely pass right by them in public, having no idea of the devastation they are dealing with. Most of the time 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. The next time you hear about endometriosis, please remember how devastating this disease can be to a person. While endometriosis 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.

Dr. Andrew Cook