My story starts out very different from most endometriosis stories; but ends the same way…with pain!
I didn’t get my period until I was seventeen; and when I did it was only twice a year. The abdominal pain started the same year I was married, 1990. My husband and I fought for 6 years with infertility. With the help of clomid (a fertility medication) I finally got pregnant and miscarried twins in my fourth month. It was then that we found out that my left ovary and fallopian tube were not connected to my uterus. It was a birth defect that ruined my chances of ever having my own biological children. My uterus was too small in size to carry a baby full term.
As time carried on, the pain continued off and on. Knowing nothing of endometriosis, the doctors made up reasons as to why I was having these pains. I was taking too much calcium, it was radiating pain from my back injury due to a car accident, it was my digestive system…but it was my gynecologist that made me stop cold in my tracks. He said it was dangerous for me to not have my periods, cancer was a scare and they wanted me to come in every six months for a check up. It was time for my uterus to go. May of 2001 I had a vaginal hysterectomy.
By December of that year I was having my first colonoscopy for lower left quadrant pain. Still no answers to the pain. I had another colonoscopy in 2005 and made a trip to the urologist because my gyno thought it was Interstitial Cystitis. The specialist said it was not IC and we decided to have exploratory surgery because the pain was so bad I couldn’t stand it any more. I was on vicodin to help with the pain!
With this surgery, they removed my right ovary because it was completely adhered to my side wall. They also ”freed” my left ovary; with no mention at all of endometriosis. I started to do my own research and searched for a endometriosis specialist. By fall of 2005 I was seeing my endo specialist and talking again of surgery. The left ovary was already adhering to my side wall. They tried to save my last ovary, but only a few months later I had to go back into surgery to remove my left ovary due to adhesions from endometriosis. Now I’m in surgical menopause!
A year after that I had another surgery to remove endometriosis implants. The next two years I had endometriosis surgeries also. I was confirmed to have IC in 2010. In March 2011 I was referred to see a Gastroenterologist. He said that because of my endo and all the surgeries I’ve had, my intestines are like concrete – not flexible like they should be – and that I will deal with pain from this for the rest of my life. The goal is to get me to the point of tolerating the pain, not to rid my body of the pain.
All I can do now is keep on top of the endometriosis by seeing my gyno every six months, having surgery to remove any new endo implants, and take medication to help with the constant pain from my digestive system; because everything is so hypersensitive that any normal function causes pain.
I fight like a girl everyday to not let my disease control my life! If you have endometriosis or know of someone who does… don’t give up! You’re not alone. Together we can get through this and fight to find a cure!
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.