My Dx

Hello all,

As some of you know I recently had exploratory surgery. Finally after years of pain I have some answers. I have been debating on how or even if to share all this but I figured if my story can help even one lady, it's worth a share. And I also figured friends and family back home would like to know and stay updated.... So here goes nothing.

About a year ago I started having chronic low to medium grade back pain. I went to an orthopedic doctor who took radiographs of my back. He told me I had scoliosis and some bone spurs, but at my age he didn't want to do anything. So he put me on some steroids, told me to go to PT if I felt the need, and sent me on my way.

Fast forward about 4 months and my back pain had become excruciating. I got to the point I could hardly bend over and then one day it got so bad I dropped to the ground and got stuck on the floor unable to get up because the pain was so bad. So after a night of hyperventilating, taking every kind of pain med possible, and wondering if I was possible to die of pain, I went to urgent care. I was given more steroids and sent to another doctor. This doctor ran quite a bit of imaging on me over the next few months and I started going to PT three times a week. It was found I have damaged a few disks in my back. Because of my age, he wanted to avoid surgery and injections if possible. After around 4 months, I had an MRI to check the progress of the damage.  The disks seemed to be reabsorbing as both the physical therapist and orthopedic doctor told me they had expected would happen in someone my age. But I still was in pain. Not the acute crippling pain, but enough pain that it was having a pretty large impact on my day to day life.

This is where things started getting to me. The doctor told me whatever pain was left had to do with chronic pain pathways, damage that couldn't be fixed to my disks, etc...etc.  He said that this is what I had and this pain was most likely going to be my "normal" for the rest of my life. He suggested going on anti-anxiety medications because stress can make chronic back pain worse and basically told me suck it up and good luck. This news was completely overwhelming. Multiple times after long days at work when the pain was at a high, I'd get home to my apartment and stare at my wall. I was completely exhausted and depressed from the constant pain and not having a good explanation as to what exactly was causing the pain. I kept going to PT here and there and kept telling my therapist that it felt like something was physically pulling on my back when I tried to bend over.  Like I physically couldn't do it. Something felt like it was going to snap.  He said it was likely muscle spasms. So here I was, in pain and overwhelmed... it was affecting my ability to focus at work and I was no longer able to enjoy things as much as I used to like my horses and social life because I was running on empty all the time. But according to my doctor, this was going to be my life so on I went.

I started to notice that the pain got worse a week before my periods each month. Then my periods became irregular. So I decided to see an OBGYN. A friend at work told me about a nurse practitioner OBGYN she went to and the clinic had really good reviews online, so I went. At my appointment, she was very thorough in asking all kinds of questions. I have always had super painful periods. Some month so painful i’ll throw up or get dizzy but until now never had a Dr. really take note. She told me she was suspicious something was going on and she wanted to run a few tests, get some blood work done, and send me to get an ultrasound. At my ultrasound, a mass of abnormal tissue was seen. She told me she wanted me to talk to the OBGYN surgical specialist that worked at the clinic. So after returning from my visit back home for Christmas, I met with him to go over the ultrasound results. He told me he wanted to get me into surgery right away. So the following Thursday I went in for a robotic surgery to explore my abdominal cavity and remove whatever they found.

My good friend took me and it went smoothly. I've been recovering since then. I went in this past Tuesday for the results. I have between stage three and four endometriosis and he also found subsequent cancer believed to be secondary to a severe endometrial lesion. Pathology said there were clean margins and no obvious signs of metastasis to lymph nodes so we are optimistic they got it all in surgery but I still will have to go through hormone treatment to prevent spread of anything that could have been missed. I also had a loop of bowel partially twisted and adhered to the lumbar region of the back of my abdomen. The area of endometriosis that was at the base of  those adhesions had grown into the nerves coming out of my lower back. My surgeon thinks that this is likely what had been causing the chronic pain and weakening of the muscles around my back that predisposed me to the acute spinal injury... and also the pain that didn't go away after the acute injury seemed to be healing. My orthopedic doctor wasn't willing to look any further or refer me on. He was willing to tell me it was anxiety and if I hadn't kept looking for answers and listened to him I could be in a very scary situation. The cancer could have spread and the endometriosis would have continued to grow un-managed.

I am starting multiple hormone treatments and chemo to lower the risk of cancer spreading or coming back and to slow the progression of the endometriosis. The treatments can take quite a mental and physical toll, the doctor has warned me. There are also a lot of long term impacts that these diagnosis will have on my life but I am just so glad to finally have the right answers! And guess what? Post surgery, my back pain is gone! Please, people if you know there is something wrong deep down and your doctor is telling you there isn't, keep looking. Keep fighting. As I have seen first hand, doctors are far from perfect. Trust your gut!

I plan to keep this updated with both my progress and struggles through treatment as well as my experiences and advice for fellow endo warriors, so if you have endometriosis give me a follow... I'd love to share advice and stories. I will also share my offishal surgical report in a later post.