This story comes from Angie who tried different drugs for her endometriosis including Lupron and Danazol and two surgeries. She discovered from her medical notes and found that both her fallopian tubes were blocked. Having no insurance, she had had to resort to fund-raising to try and finance further surgery.
Angie’s story …..
I started having period associated pain around the age of 13 or 14. I would go to the nurse's office complaining of cramping because of my period. This became a monthly ordeal and I was told that I was being silly and how normal it was to have cramps with your period.
I started to think that I wasn't believed. Like I wanted to just get out of school. That thought was unbelievable to me since I was a straight A student. Years went by and many doctors later....I had scheduled another doctor appointment (with a different doctor again) and before my appointment I got my period.
I was curled up on the floor, crying and in hysterics when my soon to be mother-in-law came in with Nyquil, trying to just knock me out.
A week later I was at a new doctor. A doctor that believed I was in pain. What a wonderful feeling when someone believes you. The doctor said he thought I was suffering from Endometriosis. I had never heard of this, even after seeking a diagnosis from 10 different doctors.
I was scheduled the next day for a Laparoscopy and laser surgery if Endometriosis was found. Indeed Endometriosis was found and I was thrilled to finally know what was wrong with me not, knowing what the long road would be like. I was given a script for Lupron, pain killers and sent on my way.
For two months I took the Lupron and it got to be too expensive since my insurance company wouldn't cover it. I was then put on Danazol. After Danazol I was told to get pregnant as soon as I could, that my Endometriosis was very extensive and I could have fertility problems in the near future. I tried to get pregnant, didn't happen. I then went on fertility meds, still nothing. Last resort was invitro. That didn't pan out either.
After all this I went back in for my next surgery, laser again since I was in pain again. Months later I was divorced with no children and no insurance. For years I was just using pain medication just trying to get by. I heard of the specialists in Georgia and contacted them. I was told I needed to send in my medical records. I called my old doctor for my records (many moons ago) and was finally told that my records were gone since it had been 7 years.
I finally figured out where I had my surgery and contacted them. They had the records for my first surgery. The records were sent to Georgia and Dr. Sinervo called to discuss the results with me. I was told that nothing was done to help me. I stated that I had two surgeries and laser surgery was performed. I was told that I did have two Laparoscopies, but both times no laser surgery was done.
I asked that he send me the pathology reports so I could look at them. I had never seen them, never thought to because I trusted this doctor who finally put a name to my pain. Upon getting the reports I was horrified. The reports stated that my Endometriosis was too extensive and penetrating to be helped. My appendix and numerous other organs were bound down, I had Endometriosis on my bowel and bladder (which I was never told) and many other things.
The one that got me the most was the fact that a tubal ligation was done and my right tube did not drain at all, and my left tube drained VERY slowly. Both my tubes were blocked. And the doctor left them that way and told me to get pregnant asap. This man took away my chances of ever getting pregnant. The report also stated that I had stage 2 Endometriosis.
Dr. Sinervo said after viewing the tapes that my Endometriosis was definitely stage 4, not stage 2 as the reports said. The doctors in Georgia told me that they could definitely and that's where I am today. Being self employed with no medical insurance I can't afford the surgery yet. My husband and friends are considering a fund raiser and if that does not pan out, I'll just have to keep waiting.