These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
(Fishers, IN USA)
Who knew there could be so many thoughtless, cruel, insensitive, arrogant, ignorant Dr.s? I’ve had them all! I‘ve been more dead than alive for 6 years.
In that time I lost everything that mattered to me. I am no longer the go anywhere, try anything Mom, Grandmother, Wife, and friend. I could no longer train horses, participate in the daily care of my farm, my home and the million things I did before I got so sick.
Wracked with pain, fatigue, nausea, vomiting, sweating and muscle weakness, like jillions of other women I went to see my Doctor ... surely she would know what was wrong .... oh no ... she passed me on and so did every Doctor. Some of them made a point to tell me their opinion of my symptoms.
Here are just a few .... your symptoms are not possible, you need antidepressants, you need to quit taking pain meds .. your fat, buy a gym membership and work out, I can’t find anything wrong with you and it appears you only want pain meds so find a pain management doctor, and on and on, until I made another trip to the emergency room in severe pain.
I was confronted with another doctor straight from hell. Lord, I was beginning to think I must be on the wrong planet. Isn’t this earth? Isn’t this America? Why are the doctors treating me so callously? I almost left but a nurse came in with orders for a CT and blood work.
The results came and the doctor delivered the news of nothing showing up. So get up and get out, we need the bed for the drunks that will be coming from the concert that is near by. My blood started to boil and I demanded copies of my CT and labs. He threw them at me and we left.
That was on a Friday. All I could think about was how to make it till Monday so I could get an appointment with someone. I was desperate. I had fired all my doctors and decided to see my husbands doctor.
In the meantime I reviewed my labs and CT report and was shocked to see the radiologist had noted my bladder was very low. I thought hallelujah this is it ... well that wasn’t the big problem, but it did get me into a doctor who is an angel in a doctors coat.
On first exam he knew I had something very wrong. I had a laproscope which showed advanced endometriosis. I had a total hysterectomy a week later. My uterus was the size of a dinner plate, full of holes and heavy with fluids. Of course the disease was everywhere.
I was so relieved to have the diagnosis and the surgery. A few months later I had to have another laparoscope due to pain and again I had more of the disease and also adhesions. My surgeon is a angel and truly saved my life. I wish I could say I’ve been able to get back all of my life, but I can’t.
The disease has taken a hard toll on my body. Before I had this disease, I had a rare brain tumor 12 years before. Shortly after my last pelvic surgery I was diagnosed with an endocrine disorder and had one adrenal gland removed last month and will most likely need to have the other one removed.
I still spend the majority of my time in bed and watch as life is passing me by. I still hope to ride my horses and enjoy the rest of my life, but I have to admit after 6 years there are times I lose hope that it will happen. I empathize with everyone who is battling endometriosis and other diseases that take thought and caring to get diagnosed and treated.
Being treated and cared for in a compassionate, kind manner by today‘s physicians is what we all should expect. The one thing I’ve learned is don’t be afraid to pick up your purse and walk out on medical professionals who do not treat you the way you need to be treated to achieve your goal of getting well.
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