I was diagnosed with endo when I was 16. I was told then I would never have children and I believed the doctors at the time. It was a hard pill to swallow as I wanted a family so bad. Thank goodness I was young and could focus on other things and not let that consume me.
I have had endless laparoscopic procedures to try and get rid of the endo but somehow it always came back or the doctor was never able to get it all and I still have it to this day even after a total/radical hysterectomy.
Besides the surgery I was given Lupron and other drugs to try and keep it at bay but I had serious side effects to the Lupron. After only two shots of it I developed severe hip and joint pain and was not able to walk. I had to discontinue treatment.
Endo is like a spider web of tissue that spreads throughout your abdomen and can attach itself to anything. That includes other vital organs and what not. It can get into your bowels and lungs. It is extremely painful because once it attaches and then attaches to something else it pulls. So when you move it resists and the pain can be excruciating. I can not tell you how many times I hit the floor crying in agony because of this or when I went to move and all of a sudden a sharp pain came over me that would make me double over. As I got older and became sexual active the pain was in even greater than I knew from the beginning. It was so painful to have intercourse sometimes I would cry myself to sleep afterwards and the pain would last days afterwards.
My worst experience with the endo to date is when I went into the emergency room (by myself) with my little girl in tow for a ovarian cyst that was protruding from my abdomen. I knew this pain all to well but I knew this one was abnormally large (like the size of melon). I was in so much pain I was delirious. I waited and waited for the on call ob/gyn to see me but was being told he was in back to back surgeries all day and he was still not out. I went in around 9pm that evening and with no pain meds I waited for the doctor. Finally around 2am a whole team of people rushed in and the doctor said we were going to surgery right away to do a laparoscopic procedure and I said “ok, I have had many no need to explain let’s do this”. When I woke later that afternoon I noticed I was put on a morphine drip. I had never been put on a drip after a lap before, so I thought this was very unusual, but thought they felt bad for leaving me with no pain meds before. Soon I needed to use the restroom and called for the nurse to help me. When I went to lift up, I knew right away something was terribly wrong. I lifted my blanket only to see that I had staples across my abdomen like I had just had a c-section, I was mortified!! The nurse kept trying to tell me that this was the surgery he told me he was going to perform, I politely told her I don’t think so and wanted to see him right away. To say the least the doctor refused to see me and I had to take an AMA to get out.
I was heavily dosed with demerol and morphine when I was discharged (I guess he was REALLY feeling bad). My husband and I drove to Texas for Christmas with our daughter a week later. The day after Christmas I noticed that I was looking like I was 9 mths pregnant and ready to pop. My Mom was telling me this can’t be normal and I should call my doctor. Well I called the doctor I had been waiting to get an appointment with for months. Mind you I had not actually seen this doctor yet but he took my call. He told me to come to the ER immediately and I said nope, I am coming to you was not letting another doctor touch me if it wasn’t him. He was flattered but was worried, so worried he called the hospital before hand and setup and OR and pre-admitted me. Again, let me remind you I had not met this doctor at all, not one appointment. So, my husband drove me 8 hours back to New Orleans. We got there around 10pm and he was there waiting on us. Met me for the first time and got me into a room and examined me. He took one look and rushed me to surgery. I remember telling him the whole time “PLEASE PLEASE PLEASE don’t take my ovaries, I want to have more children”, I was terrified that I was about to have an emergency hysterectomy.
When I finally woke everything was dark, there was a faint light at the foot of my bed were three surgeons stood. They were still in their scrubs and gowns and I remember the look on their faces…my heart sank. Dr. Champ came to my bedside and held my hand and prayed. I could not tell you the emotions running through my head at that time, it was so overwhelming. He then told me that he had to take one of my ovaries, that it was shattered, but the other he made sure was working. He told me that the surgery took 12 hours and two other surgeons to help him finish. I was in awe, I did not know what to think about that. He proceeded to tell me that my body was so riddled with endo that he could not even get it all. It had spread everywhere and was wrapped around my kidneys. He said that they left it in fear with my kidney history that they would have done more damage. He also told me that I had a large hematoma at the incision site. He said it was the size of a softball. He was in amazement along with the other two doctors how that thing had not ruptured and killed me. All three doctors were in agreement that it was a miracle I was still alive and that the idiot doctor who performed the last surgery on me did NOTHING!! He opened me and and saw the extent of my ailments and closed me back up!! They wanted his name everything so they could turn him in. After this experience I found out that the doctor had been using cocaine and had performed over 15 surgeries that day with no sleep. I was his last of the night. It was a damn shame.
I am still experiencing difficulties from the endo but not near as bad as I did before the hysterectomy. I do know its still in me around my kidneys and it does cause me great pain some days but I am managing through it. I was asked to start taking the Lupron again but have refused it. I did not want to add to my pain. All in all I have to say this has been my longest running ailment out of all of them and hard to find. It can only be seen through surgery, no scan will show endo.