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.
We would like to hear your thoughts, stories and experiences. Post a comment below and tell us what you think.
I have been living with endometriosis for many years. I have seen 6 ob/gyn this year in search of an answer for my pelvic pain. All 5 of them dismissed the idea that endometriosis could be the cause of my pelvic pain. One of them asked me condescendingly if I know what endometrisis means. I was sent to a pain specialist doctor and he was going to inject cortisone in my back. I have been living with pelvic pain for 3 years, but the disease was already at stage 4. This means it has started at least 15 years ago. The result of having it for so long most likely causes infertility.
ReplyDeleteI am greatful that I found Dr.Cook through the advice a pschycotherapist. I had been suffering from depression and fatigue. I thought my art career would be over at 37 years old because i was always so tired, especially at the end of the day. My pelvic pain was always present and kept tolerable with anti inflammatory medicine. I am also a samba dancer and refused to give up dancing. In 2008, I performed in SF Carnival and samba my way in the parade, a 2 mile route! Yes, I was struggling with the pelvic pain, but it didn’t come to a head until a few months later. Up to 2 weeks before my surgery, I started a ballroom dancing. I strive to be strong and show up to dancing on good days. Thank you to Dr. Cook, I will have my life and mobility back. Dr. Cook is an inspiring doctor. It was the first time I ever received the best medical care with respect, compassion, and personalized. His staff Jennifer and Linda are also excellent poeple who helped me to get through my recovery process.
7 surgeries and countless other procedures and I am still dealing with the pain everyday. Reading this incredible blog makes me feel vindicated, and definitely not alone. Thank you Dr. Cooke
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