My Story

I always had painful periods and was lead to believe that it was just one of those things that women have to deal with. But the pain continued to get worse and worse. Of course, I still thought it to be normal. At the age of 18, I had immense pain on the right side of my pelvis to the point that I would pass out, literally dropping to the floor.

I went in for my first laparoscopy and they found my intestine wrapped around my ovary, choking it. However, they didn't find any endo. I was unfortunate enough to get a horrible surgeon, Dr. Cynthia Phillips who is no longer in practice. (Thank God!) She perforated my intestine and sent me home bleeding internally. Twelve hours later my mom rushed my back to the hospital because my lips literally peeled off due to lack of oxygen. Another 12 hours passes and I was back in the OR having emergency surgery that left a zipper like scar up my belly.

Two years later, I go to the ER because of horrific pain. They noticed a tumor or cyst on my right ovary and refer me to a OBGYN. Initially, they thought it to be a dermoid tumor – a very odd tumor that is benign but has teeth and hair in it. GROSS! As you may have guessed, that was not the case. In fact, it was a huge lump of endo. I remember being very upset because I knew a little about endo and knew that there was no cure.

As time went on, my endo got worse. I was told if I wanted to have children I better do it fast. I thought WTF! I'm only 22, have no boyfriend, am still in college and broke as a joke. How the heck am I going to get pregnant and better yet how will I pay for this kid. And, should I really have a child just for the sake of having one?

This messed with my head beyond belief and every guy I dated I immediately judged as to whether he was daddy material. The answer was always no.

I opted for Lupron instead of pregnancy. I got a shot every three months for six months. I don't remember this period very well. I think I blocked it out because I was so depressed, angry and alone with my disease. My mother remembers it well and reminds me of how mean and moody I was. The Lupron helped for a while and I had about two years of being relatively pain free.

After a while, I became indifferent about my disease. I was sick of dealing with it and I had lost my insurance so I couldn't get treatment anyway. Fortunately, my best friend also had the condition and helped me out when I was in extreme pain.

I let a couple of years pass, finished college, got a good job and INSURANCE. By then, my best friend had found a world class group of doctors and I followed her lead. Last February Dr. Mangal spent five hours removing my endo and my appendix. I was referred to Dr. Mathias who has done his own primary research and clinical trials and found that woman with endo have mini seizures in their colons. These seizures excite the nerves and aggravate the disease. He also found that we are insulin resistant and the sugar in our blood furthers the condition.

He put me on a low glycemic diet, meds for the seizures, Omega-3, Super vitamins and olive oil. In addition, I went on Lupron. However, this time it would be daily injections and add back therapy to cut down on the side effects.

I have to say that shooting up every morning is not the best part of waking up. But the thought of having children is.

So here I am coping with the hot flashes, crying and overall feeling crappy. Hoping that whoever reading this post realizes that they are not alone.