How I Got Diagnosed with Endometriosis and IC

I started my period at age 9, and things were fine until I got into 7th grade. I had horrible cramps; I would have to go to the nurse's office and be in the bathroom for a long time, going back and forth between sitting on the toilet and sitting on the floor with my head over the toilet, throwing up. I would have to go home early several days each month. I was started on birth control pills, and then everything calmed down, I just had some cramps, but no more throwing up.

Then, in June 2006, everything just suddenly changed. I was on a mission trip with my church, and one morning I woke up with terrible pain on my lower right side. No one believed how bad the pain was. They told me to take Tylenol, Advil, Ibuprofen, whatever I could to lessen the pain; nothing helped. The mission trip was to South Dakota, but we were staying in Nebraska, about 45 minutes from the border. We traveled from Virginia to South Dakota, stopping at churches along the way to stay overnight. It took 4 days to get there. The group was actually 2 mission teams, one youth and one for adults/families. When we first got to South Dakota, that is when the pain first started, and the chaperones told me to take the different medicines. When it was time for the youth team to go to Nebraska, I was still having a lot of pain. My pain kept getting worse. The chaperones told me not to talk to my peers about it, and they thought I was just looking for attention.

One day, after we got back from doing our mission work, which was painting a house, we had a rest time. I went to the bathroom, and there was blood in my stool. I went back to the room and lay down on my air mattress. I felt like I had a fever, and the pain was really bad. Some of the other girls were in and out of the room, and I asked them to feel my forehead to see if I felt warm. They said I did. (I kept telling my youth leader that I didn't feel well, that the pain was really bad, but he and the other chaperones didn’t know what to do and didn’t believe me). I then told the girls that I had gone to the bathroom and had some blood in my stool. So, b/c my youth leader and the other chaperones didn't believe me, some of my friends went to find one of the staff members. He called 911, and it was a police car that took me to the hospital. The doctor drew some blood, and did a rectal exam. Everything came back negative. They just told me to try to eat fruits and vegetables. Well, that was kind of hard to do b/c the place we were staying at, different groups had to cook the food, and sometimes there were fruits and vegetables, sometimes there weren't, and on the way home, we stopped at fast food restaurants.

When we got home, I was still in pain. I kept going to different doctors, had CT scans, ultrasounds, MRI's, etc. I went to my nurse practitioner, and she said that I had a small cyst on my left ovary. She also said that I could have endometriosis, but that my answers to her questions made her believe that it was not likely that I had it. I went off to college in PA, and went to the ER 2-3 times, more blood tests, ultrasounds, etc. When I was home for fall break, I had a colonoscopy done. That came back negative. I went back to school, and saw a gynecologist, he said it was possible that I had endometriosis, and said he could start me on Lupron, or do laparoscopy. Well, I decided neither.

When we moved to Alabama, we found a gynecologist who was willing to do laparoscopy. March 1st was my first lap. He diagnosed me with endometriosis, and removed the cyst (well, actually he punctured the cyst in the process of trying to remove it, so he drained the fluid and removed the cyst wall), and removed as much of the endo as he could. I went back to school, and the pain came back a week later. At my post op appointment in April, he said that I should try Lupron. I gave it some thought, and decided to give it a try. I had 3 injections, and during that time, I had grown another cyst. When I came home for the summer, I decided that I would stay in Alabama and go to community college for a year or two. I kept having lots of doctors' appointments and went to the ER 2 times.

Finally, in August, I went to a doctor that was recommended to me by a friend who lives about 30-45 minutes away from me. The doctor was great. He really listened to me about my pain, and what I wanted him to do. I had a 5cm cyst on my left ovary, so he said that he would remove that. I also wanted him to remove my appendix, just to be on the safe side. He also said that I possibly had a hernia, and a tilted uterus. He would also remove as much endo as possible. I was tested for IC, and I tested pretty positive. Originally, my surgery was scheduled for September 19th. Then, the following two weeks, my pain increased so much. I was able to get in to see my doctor again. They did an ultrasound to check the cyst, and to everyone’s surprise, it was gone. The doctor guessed that it had probably ruptured, and that was possibly a lot of the pain that I was having. I had been hoping that the surgery could be moved up sooner. Well, my wish came true. My doctor said that he could see that I was in a lot of pain, so he said he could try to move my surgery up to September 5th, and he was able to do that. So, I had my surgery, they removed my appendix, they removed as much endo as possible, they diagnosed me with mild IC, they also found Pelvic Congestion Syndrome. I indeed had a hernia, so they repaired that. They also repositioned my uterus. I stayed in the hospital overnight, partially b/c they did so much, and partially b/c it was so late in the afternoon and it is 2 hours away from where I live.

So, in short, I've had countless blood tests, ultrasounds, CT scans, MRI's, a colonoscopy, 2 laps, lots of bladder instillations. I was diagnosed with Endo at 18, IC and food intolerances to wheat, gluten, and dairy at 19. I've tried many bcp's, Provera, Lupron for the Endo, and Elmiron for the IC. I stopped taking Provera, and was put on Seasonique at the end of May. I am now 20, and began having migraine headaches about 3 weeks ago. I've tried Axert, Ultracet, Naproxen, but nothing has really worked. I'm now off of Seasonique and going back on Ovcon, which is the first bcp I was on. I really hope that the migraines go away soon, and that they don't continue on Ovcon, and that nothing else happens (like the Endo coming back, etc).


upcoming posts: what is endometriosis? what is interstitial cystitis (IC)?, food intolerances, migraines