How I Got Here

For my first “official” post on this blog, I figured I’d talk a little about how I got to where I am today with my endometriosis.

Growing up, I always attended doctors appointments with my mom where the doctor would make a smart ass comment about how I would have a long journey ahead of me (at 8 years old this clearly carried no weight) or would say to me “see you when your turn 16!” Little did I know how true this all was.

I remember my first couple of doctor’s appointments like they were yesterday. I left with the diagnosis of acid reflux, a stomach ulcer, and IBS ,  and about 4 different prescriptions.

After months and months with no relief, I saw a different doctor. Same diagnosis – new medicines. In addition to these new prescriptions, I also left in tears.

Then comes the third, fourth,  and fifth doctors who said there’s no way my endo should be causing the pain I’m in so I must have a cyst. After many ultrasounds, x-rays, and many, many, tears and time wasted, I was referred to an endocrinologist.

After one laparoscopic surgery, which results in missing 3-4 weeks of school, I was told nothing was wrong with me and it was all in my head, for which I should see a psychiatrist.

okay true.

As mentioned, my mom had pretty bad endometriosis herself: ovaries, lungs, pelvic floor, intestines, diaphragm, and sciatic nerve. If you don’t know my mom, she is from Jersey, and it is very obvious when she’s is mad. You don’t mess with my mom.

My mom called all the doctor’s I had seen before demanding another appointment. These appointments were basically my mom yelling at them demanding answers for my pain and refusing to take anything less than a diagnosis for endometriosis.  I’ve never seen her madder than when we would see a doctor and she would tell them they had no idea what they were talking about.

My mom had seen a specialist, an award-winning doctor in Chicago a couple of times who not only saved her  life, he offered to save mine years in advance. He always told her that he knew I would be needing to see him at some point. After phone calls with him, he referred me to the doctor who basically saved my life through Penn State Medical.

My first visit he listened to my telling of all my visits, being told I was crazy, needed a therapist, it was all in my head, and the physical and mental pain these other doctors had put me through. He scheduled an immediate laparoscopy which also meant getting all my school stuff for the next month figured out.

The first thing he told me when I woke up from anesthesia was, “well, honey, you surely aren’t crazy.” Upon seeing my mom for the first time after he talked to her, she was still crying and you could tell that she had been crying for a while. My dad was also there, and he had told me he wasn’t coming till later that day so I figured I was dead and this was my view as a ghost. Both my parents crying, my mom on the phone repeating “this is all my fault, it is so bad.” This is when I was told how severe my endometriosis really was, and how much damage had been done because of all the time spent wasted.

So, 5 years later and I finally got the diagnosis I had been waiting for, just maybe a little worse than I expected: Stage 4 (worst kind) of endometriosis in my bladder, covering my pelvic floor, intestine, and the bladder was so damaged it was bleeding uncontrollably causing interstitial cystitis.

The diagnosis of fibromyalgia, sciatic nerve damage, and pelvic nerve damage, and endo in my lung and diaphragm came within the past six months. So no, I’m not crazy. And yes, maybe I complain too much sometimes, but I can promise the complaining that you are dealing with from, is incredibly small to the pain I’m in.

I wish there was a quick summary for this, but unfortunately there is not. Look for future blogs about medicines and treatments I have tried and am currently on.

I also wish there was a happy ending to all of this, however I am unable to always find one. For me, the constant love and support that surrounds me is forever my silver living.

Look for future blogs about medicines and treatments I have tried and am currently on.