How did I get here?

Many people are curious about what happened to bring someone to this point. Many wonder out of fear that the same may happen to them, many are just curious. Well here I will tell you my story.

I am infertile. I had both of my tubes removed because I had no other options. I suffered for years with severe pelvic pain and would go from clinic to clinic begging for them to do something only to be told "this is normal menstrual cramping you just have to toughen up. Nothing is seriously wrong." I didn't fight. I wasn't my own advocate. I trusted the doctors. Now I am left wondering "what if" what if I had fought for tests, would I be living a different life? Anyway, I was sitting in class one day as a college student and had such severe pain I was literally shaking in the fetal position on the floor in the back of the room. The prof. sent everyone out on a break and told me I was excused for the day. I was crying and told him it hurt too bad to move. When I was finally able to excuse myself, I called yet another clinic in tears and begged to see a smart doctor (yes I used those words!). The triage nurse was concerned but I insisted on waiting for an actual appointment and not going to Urgent Care. That doctor ACTUALLY listened to me and immediately ordered an ultrasound before I left the clinic. She called me that afternoon and told me she was referring me to an OBGYN. They found a mass the size of a baby's head that was perforating my bowel and had damaged both of my fallopian tubes. I also had numerous smaller masses all over my insides. The Gyno said my fallopian tubes were full of toxic fluid and scar tissue and were swollen to the size of bratwursts. She said I would never be able to naturally conceive and with the state of my tubes if I ever had unprotected sex the odds of me ending up with an ectopic pregnancy were greater than 50%. So surgery was scheduled for 1 week before my 21st birthday. 3.5 hours in the OR with 2 surgeons. She was able to remove one tube and 40% of the largest mass and most of the smaller ones. She was not able to remove all the mass because she was afraid she would cut my bowel (and that would have been BAD) and she couldn't get the other tube because it was too stuck. She told me she did all she could but that until that other tube came out I would still have the pain and would not be able to do IVF because the toxic fluid would cause the pregnancy to fail. I lived like that for another couple of years before the pain was too bad. I went to a new family practice doctor and begged him for a suggestion on who to go to. He sent me to my now doctor. I showed up in clinic with about a 4 inch stack of medical records for her. Her jaw dropped. I quickly gave her my history and pointed her to my last ultrasound report, my last MRI report, and the surgical report. She left to read those while I changed. She came back - attempted an exam which was impossible with my pain level and immediately scheduled a repeat ultrasound, MRI, and sent to me to schedule surgery. We talked and both knew that surgery was my option. That bad tube needed to come out. Well during the 2 years since my first tube removal surgery more cysts and adhesions had grown. It was another lengthy surgery and 2 very talented surgeons to fix me.

Two days after surgery, my surgeons (I had an OBGYN surgeon and a general surgeon) checked me out in the morning. I then got up around 9 to take a leisurely walk around the floor with my nurse. About 5 feet out of my hospital room, my head got "thick" I could not hear or see anything and started having problems breathing. I remember screaming for my nurse and crying. I remember hearing people yelling at me and asking me to do different things, but I couldn't. Just over three hours later I woke up in my bed hooked up to oxygen and a variety of other machines. I was still feeling awful but had to go to the bathroom. In an attempt to make it to the bathroom with my nurse the same episode happened again (this time accompanied with projectile vomiting). Needless to say it was the scariest thing that ever happened to me and my nurses were equally concerned. Doctors were paged (not mine unfortunately the on call docs) and they made "over the phone" diagnoses - said I had a bowel obstruction and had to walk it off. Not what I would say is appropriate in this case but I was too out of it to know what was going on. The day slowly ticked away. I continued to be in horrific and unmanageable pain, pale, and dependent on oxygen. They had to re-cath me because the nurses knew I couldn't get out of bed to go to the bathroom without passing out. The next morning comes and both of my surgeons are at my bedside with their nurses. They booked the OR, scheduled a CT Scan, and ordered units of blood. I had lost a significant amount of blood and required a blood transfusion as soon as possible. The CT Scan showed what the surgeons suspected. I had a massive abdominal hematoma from the surgery and it needed to be drained that day, but first they had to replace the blood I lost.

I am not convinced I have endo. I do not come from a family history of it. All I know is that I have ovaries covered in cysts and cysts all over everything else. They remove them in surgery and they come back. The only other thing I can think of is that this is related to when I was sick when I was 11 and almost died. I had a ruptured appendix. It had burst 30 days before they brought me into the OR to have it removed. The doctors had no idea that it was my appendix because they were not in the correct spot (the location of my appendix is probably the only reason why I am still alive). The doctors were shocked when they realized how long I lived with a ruptured appy. I am grateful to my family doctor as a child. I know without a doubt that he is the ONLY reason I am still alive. He did emergency surgery on a Sunday night after he had been on a family vacation for 2 weeks because his nurse called him at home (she had called my mom daily at the hospital to keep tabs on me) that night to tell him that she didn't think I would be alive in the morning if he didn't do something. He called his surgeon friend and at 10pm that night they put me to sleep with a promise of fixing me - a promise neither should have made but thankfully I lived. I am not sure if that is the reason for my problems now, or if my problems really are endo., or if I am just broken with no explanation. I just don't know, and I don't know that a reason would make things okay.