These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
20 years..I suffered with Endometriosis
by Lori D
I had painful periods from the time I started at age 11. I would hurt so bad.... Horrible lower abdominal pain. Days I couldn't go to school because of diarrhoea. At age 20 I developed a large ovarian cyst that just grew larger. When I had the surgery. the cyst was the size of a baseball.
They tested the fluid because they thought it was an endometrial cyst....as per my surgeon.. The pathology report showed no endometriosis which I would learn later was not accurate. At age 25.I developed another cyst and was suffering from some of the worst pain I ever had in my life.
This was a different surgeon, different state. After surgery he told me I did in fact have endometriosis. That I had not been diagnosed correctly after my first surgery. That I would then likely not be able to ever have children. I am heartbroken.
He advised me to begin taking shots that would put me into a temporary menopause. At the time in 1994 they were not covered by insurance. I was unable to afford them at the time. By the GRACE of GOD.... in October of 1995 I became pregnant with my son and on July 10, 1996 I gave birth to my miracle.
At the advice of my OB/GYN, we decided to start trying again for another baby within a year after my sons birth because of my history with this disease. I was unable to get pregnant and in February of 1999 I had another laparoscopy. My new surgeon went in with the scope and came right back out. Once I woke up the look on my family's face and my doctor told me everything.
I was covered in endometriosis. 2 months later I had a major surgery with my surgeon as well as a 2nd surgeon as the endometriosis had spread to my liver, my colon, gall bladder, etc. The surgery lasted for several hours. The recovery was so painful. I had staples in my stomach and a 3 year old that didn't understand why momma couldn't hold him.
We tried to get pregnant again. With the help of fertility meds, we tried husband insemination... But were unable to conceive again. The pain came back and was unbearable. I had another surgery in 2002. Then again in 2004 I had an ablation and tubal thinking that would help. My periods never came back. But my endometriosis came back with a vengeance.
I had pockets of endometriosis on my uterus the size of grapefruits. My left side was completely covered. My left ovary was adhered to other organs. And in May of 2006. I had a complete Hysterectomy. They actually injected my left side with novacaine. Because of the work they had to do my doctor said the pain would have been excruciating.
Within 2 months of my surgery I was back in the ER with severe pain on my left side. The next day my family doctor called me saying my ultrasound showed I had a cyst on my left ovary. I explained to her I didn't have an ovary.
Turned out to be another pocket of endometriosis due to hormone therapy and my left side was so bad that my doctor missed a small piece of my ovary. Here almost 10 years later.. I still have pain on my left side. Hoping this monster has not returned......
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