My story is a bit length so if you want the short version just watch this video.
Now for the Lengthy bit…
I want to share my story and why I am passionate about bringing creating awareness to these issues. Since I was 11 I have had very painful heavy periods . As I got older the symptoms got worse. I started college at 15 and that is the first time I really remember the pain having a huge impact on my daily life. During my periods I would go to class and be overcome with such severe pain I would run to the bathroom shaking, trying not to vomit. I guess the pain got worse in a “slow” progression so I just thought it was normal to have such pain with your periods. With each year the pain got worse and worse. There were weeks when I spent more time in the bathroom trying to compose myself then I did in lectures. The pain would radiate from my lower abdomen, down my legs, making me feel flushed and nauseous. At time I would even get dizzy and see spots.
On I went like all was normal. I remember going to holiday events, friends’ parties, making Christmas cookies etc… all while hiding the fact I felt like I might pass out at any moment. In my final semester of my veterinary technology degree I was in my anesthesiology rotations. I was running anesthesia on a little golden retriever puppy that was in for a spay. While running anesthesia you have to wear a scrub cap and mask (normally no issue at all). Well this was a particularly high pain day and my patient’s blood pressure kept bottoming out causing a high stress situation. The procedure took an hour and a half and I stayed with my patient until he started to wake up despite feeling pain shooting through my whole body. As soon as my patient came to, I told the surgeons I needed to step out. I got in the hallway and I remember seeing spots and stumbling/falling down. Once I was able to return to a standing position, I went to the bathroom and threw up multiple times. I think it was the combination of the pain and the adrenaline from the stressful surgery but it was too much for my body to handle. It was at this point I spoke with my mom and told her I believed something more was wrong. And thus came my first trip to a Dr. for my pain.
I went to see our family practice Dr. and he asked me a few questions. We were worried the light headedness and nausea were from being anemic. When the blood work came back normal our physician told me “some women just have painful periods” and wrote me a prescription for Tramidol (an addictive synthetic opioid). I knew that Tramidol was addictive (we give it to animals after surgery so I knew a bit about it). Tramidol also made me light headed so I avoided taking it unless 100% needed and still suffered with a lot of pain. Blown off and without solid answers I moved on.
It was later that year that I had such severe pain over take me (while not on my period) that I ended up on the floor in the bathroom too pain stricken to stand. I called my mom near hysterical and she came home from work and drove me to the ER. I was in excruciating pain (9 out 10). They got me into a room quickly for fear my appendix was going to burst. They sent me straight to ultrasound. On the way back from the ultrasound there was a surge of pain and then the pain went way down to maybe a 3/10. The Dr. later came in and told me upon ultrasound they had found a cyst the size of an orange on my ovary and he suspected it burst and that is how I got the sudden pain relief. He told me what to expect going home and that was that. No talk of underlying issues that could have caused the cyst or anything.
So for the next few years things went on. I had more signs and symptoms but I didn’t know they were related to this disease process. I became reluctant to see a Dr. both because of the cost and the lack of answers I got any time I went. So I toughed it out and carried on. It was not until I moved to Virginia that that changed. I started having back pain that was interfering with my work. I work as an equine technician (a fairly physically demanding job) and my back pain was constant. Luckily I had great insurance through work so I went to see an orthopedic Dr.. He radiographed my back and noted scoliosis and some chronic changes in my lower spine. He said that I likely had disk disease and would potentially need injections and even surgery in the future but he was hesitant to do it on someone so young. So again I was medicated instead of diagnosed and treated. He gave me some steroids and anti-inflammatories and sent me on my way. The meds helped a bit and once I used them all the pain was back worse than ever and again I was left with no real answers.
The pain became so bad I was left hyperventilating on my bed and had to have a friend bring me to urgent care. Again at my visit they gave me more drugs and gave me a referral to a spinal specialist. So on I went to another Dr. I told him what was going on and he sent me to an MRI. The read came back and he said I had “disk disease” and I was advised to “change career paths” cause there was nothing they could do for someone my age. I wasn’t giving up my dream carrier so I went to physical therapy. The fact that he suggested I change careers (that I had moved halfway across the country where I knew no one for) was preposterous looking back… he didn’t even have a real diagnosis and was so ready to shatter my dreams. I did two or three months of physical therapy with minimal pain improvement. I remember telling my physical therapist it felt like something was pulling inside me. He told me it was just muscle spasms. After completing me series of PT I went back to the orthopedic Dr. He sent me back to have another MRI. After the MRI I was supposed to set up an appointment to go over the results. The office lady was having trouble finding a time that worked for me to meet with the Dr. and finally said “Let me just read his note that is in the system for you “Disk disease looked improved, suggest anti-anxiety meds and a job change to prevent further pain.” I was completely defeated…
I knew this pain was not in my head and it was not getting better. But I felt like I was crazy. I got in a really bad head space thinking I’d never be able to do what I hoped with my future, wondering if I should quit my job (but I love my job), what was wrong with me? Would I have this pain forever? After doing a bunch of research on my own on what can cause severe back pain in young women, I read an article about endometriosis. It sounded just like my case… And I was due for an OB/GYN visit anyway. So I went in to an OB/GYN nurse practitioner that came highly recommended. She spent two hours with me getting an in depth history, full physical, etc, etc. At the end she told me she strongly believed I had endometriosis but also felt an odd mass on the right side of my abdomen. She drew blood, took some biopsies, and sent me to an ultrasound saying she would have the US submitted to the surgeon and I would meet with him to go over the results.
Once I met with the surgeon he told me he also believed I have endometriosis but could only diagnose it through surgery. He was also suspicious of the area of abnormal tissue under my right ovary. He then told me he thought I needed to go into surgery right away. That appointment was on a Friday and I was in for my surgery the following Thursday. The surgery went well and I don’t remember anything the Dr. told me after surgery but I remember looking at my friend who took me and saying “my back doesn’t hurt”. I had just had abdominal surgery and was in less pain than I had been every day for the last six month. The following week I had my post surgical appt. I was informed he had found extensive endometriosis all over my reproductive tract, adhesions all over my ovaries and extending throughout my abdomen. One particularly bad area was over my lumbar region of my back. Endometriosis covered the nerves coming from my spine and had adhered them to my bowels. My bowels were displaced (remember how I told my PT how I felt like something was pulling inside me? It wasn’t muscle spasms…). The adhesions were so extensive they had caused tears in my broad uterine ligaments from the tension they had been causing when I bent over. I had 4 cysts, two were torsed, one was a “normal” chocolate cyst common in women with endo, the third was a blood filled cyst so large the surgeon opted not to remove it for fear of hemorrhage. The abnormal tissue under my ovary he removed and sent to pathology. It came back as a form of endometrioid carcinoma that grows on and around the ovaries. He removed the area with clear margins. It is very uncommon to get this form of carcinoma at such a young age. My Dr. believes it could have been caused by the excessive scarring from the endometriosis that caused cell crowding and mutations. Although I suppose we will never 100% know why I was one of the few unlucky ones under 40 to get this type of cancer.
So I finally had my answers…. and that alone made me feel better because I knew I WAS NOT CRAZY! I KNEW THE PAIN WASN’T IN MY HEAD! For the following 6 months I underwent chemo and hormone therapies and blood work and scans and more meds and more side effects and more scans and finally…. I was told I was in remission from cancer. I still have some back pain from the endo and upon further discussion with my OB/GYN we have decided to try and maintain the pain for as long as possible and in 2 to 3 years I will probably have to go to a specialist surgeon who can safely remove the endometriosis from the root nerves and resect the affected areas of bowel that were too risky to remove in the surgery I had. But for now the pain is mild most days and moderate on the worst. Completely bearable compared to how it was before surgery and now I know what it is and that also makes it easier to handle. I am not at the end of this journey but I finally have some light and quality of life back. Throughout this journey I have done tons of research, changed my diet, and learned coping skills. I hope through my blog and awareness campaign I can encourage others to find answers, get help, balance their lives with chronic pain, and help their loved ones know what they can do to help as well. Please follow this FB page. Eventually I plan on starting a blog and an instagram as well.