Hello, my name is Dede Wilson. I am yet another endo sufferer. At 25, I have been through it all.... surgeries, 14 months of lupron, danazol, and now continuous birth control pill therapy. Though I was actually diagnosed in 1995, I have been dealing with this from the age of 17.
In the beginning, I had no clue the problem was of female origin. I was just seeing my family doctor who also had no clue. He just shoved it off as nerves. He said that I just got out of college and had a professional job and it was getting to me. He at times gave me Valium.
When my gastrointestinal problems grew really bad, I was referred to a gastrointestinalist.That was the most embarrassing experience of my life. I was probably around 20 years old then. I was given a barium enema, a colonoscopy, and an upper GI. None of which proved anything. So of course, I was given the generic irritable bowel syndrome explanation. Then I endured months of useless medication which was supposed to help my imaginary condition.
Finally I began having irregular bleeding. That was very uncommon for me as I was also taking birth control pills. Every time I mentioned endometriosis to the doctors, it was shot down. There was no way they said, I was on the pill and way too young. Finally I got a gynaecologist. He also didn't believe my endo theory. He wanted to change my pills due to the break through bleeding, but I refused knowing that something else was wrong.
Finally I was in SO much pain, I called him on the phone one day and basically demanded a laparoscopy. He gave in and in 1995 it was diagnosed. During the surgery he did not cut any of it. Just sewed me back up and began the Lupron. Then I felt wonderful for a long time. But I knew I needed a different doctor. Though I was grateful that he found it, he didn't have a very good bedside manner.
After a round of Lupron, I began the pill again. Within a few months I was sick again. I got a bit panicky at first, wanting something done immediately. I did not want it to get as bad as before. The doctor said there was nothing else he could do. He had tried all he knew.
At this time I was between jobs and without insurance. I had heard that many women were doing Lupron longer than the recommended 6 months and I desperately wanted back on it. I asked the doctor, but I had no insurance and no way to pay. They wouldn't set up a payment plan. A wonderful nurse at the office got a pharm rep to give up a free shot and I was back on my way.
Then I got a new job with different insurance where my doctor was not on the provider list. I found a new doctor quickly, which I thought would be just temporary, but he turned out wonderful. He actually listens and talks with me. So it took me about 4 years to find a suitable doctor. Thank you Dr. Miller!
Though my endo caused pain, bowel problems, nausea and vomiting; the symptom that makes me the most angry is the anxiety. I have spent years of my life constantly feeling like I am going to vomit. At times, this makes it very difficult to leave the house, go to work, go to the store, or much less a restaurant, for fear of vomiting in public. This wore on me at times to where doing the simplest thing caused debilitating anxiety. Though I am doing better with it now, it has been the worst part.
The only good thing out my experience was that I was able to help my sister. She began developing symptoms and my knowledge allowed her to be diagnosed early. She is currently the 7th member of my family to be inflicted with endometriosis.
Well that is my story. And at the age of 24, I will surely have many more chapters. I just hope that the chapters that involve endometriosis will include one of a cure. Feel free to contact me for support or just to have someone who UNDERSTANDS what you are going through. Best wishes of good health!