March is Endometriosis Awareness Month. 1 in 10 women suffer from this debilitating condition. I am one and this is my story.
My symptoms started very early, probably around 15 years old. I was told it was normal cramps and that it was part of being a woman. However, the pain was so bad I would often be doubled over and end up visiting the school nurse’s office. Soon after high school, I found myself very sick. It was my freshman year at SUNY New Paltz and I vividly remember being in so much pain I couldn’t leave my bed. The pain was centralized near my appendix, so when I finally gathered the strength to get to the infirmary on campus, they sent me to the nearest hospital for what they believed was appendicitis. After 6 hours and several tests, I was told that was not the cause of my pain. Upon my refusal to have further invasive testing done there, I was told to go to a gynecologist. The doctor believed that my problems likely stemmed from that as opposed to anything else. It would take years but that doctor turned out to be spot on.
I visited a gynecologist, as instructed, and after more testing I was diagnosed soon after with PCOS and immediately put on birth control to try to alleviate some of my symptoms. The doctor told me that my pain was derived from cysts that were building up & bursting. The pill only masked my issues. While the period pain greatly diminished, I began years worth of suffering from undetectable stomach issues. My stomach would often blow up to the size of a woman about to give birth…for reasons I still don’t know. I also continued to get random pains near my appendix. I visited 5 different stomach doctors and had every test except a colonoscopy done – only to be told nothing was wrong with me & that I was suffering from IBS. Having been told by the gynecologist that my right ovary that was polycystic, I tried (and failed) for years to link my hormonal condition & stomach issues together. Every doctor refused to support my theory and no one would help me. This went on for YEARS.
Fast forward to the fall of 2017, roughly 16 years after my first severe pain attack & diagnosis of PCOS. I had just lost my baby and was no longer on birth control. I began to get very sick. I started noticing that slowly all of the issues that I had in high school were coming back…but this time twice as bad. I went to two different doctors about my pain. After a couple of months & several tests, the second doctor ultimately found a small polyp in my uterus, which they removed and biopsied for cancer. The biopsy turned out to be negative but I was still very sick. The pain was unbearable & I didn’t know what to do anymore. The doctor also couldn’t help me – but he did send me to someone who would. She was a specialist for pelvic pain & endometriosis. I started to research this condition and finally it all made sense.
As I did the research, I noticed that everything I had been suffering with and seeking help for, was classic to endometriosis. For years, I had been convinced my stomach issues were related to my hormonal problems. Now I had the science to back me up. One of the most classic symptoms of endo is appendix pain…and IBS. Two things I had been suffering with for over 15 years! When I explained everything to this new specialist, she nodded her head and told me that I presented classic endo symptoms & she could help me. I started to cry. For years, it felt like no doctors believed me – finally I found someone who not only believed me but knew how to treat me! She had me begin a new pill, which mimicked birth control but contained different hormones. After two months, I didn’t feel better so she presented other options, one of which was another drug called Lupron…which puts your body into menopause. I lost it when she even suggested such a thing so I opted for the other option, which was to have a laproscopic endometrial excision & appendectomy instead. My appendix wasn’t appearing to be sick, but since that was where all of my pain was located (and since you don’t need an appendix anyway) out it came. The recovery was miserable but as time went on, I got increasingly better. For the first time in my whole life, I had regular periods with minimal pain and almost non-existent stomach issues! I made the decision to not go back on birth control. With my age and history – I don’t need anything else standing in my way when (and if) the opportunity to have a baby presents itself. I went to my regular gynecologist a few months later to check on everything and upon doing a sonogram and blood work. It came back great! I was told my body was in the best condition it had been in years…and was given the green light to try for a baby!
Everything really has been great, up until two weeks ago. For the first time since my surgery, my period was late….and all out of whack. I started getting that appendix pain really bad again – which is very strange because I don’t have one anymore. My stomach has been acting up, to the point where even water is bothering me, & I’ve had the most miserable fatigue. I’m hoping this is just a temporary, fluke situation and not the start of really bad flare-ups. I’m in the process of undergoing several stomach tests as well as another sonogram to determine the cause of this stomach issue. I know endo can come back, but I’m hoping this is something else – something I won’t need another surgery for.
If you or someone you know is suffering, don’t give up! We know our bodies best – and we know when something isn’t right. It took me MANY years to finally get answers…but I have them now and I couldn’t be more grateful! Be honest with your doctor about your symptoms and don’t settle for answers you aren’t comfortable with. Seek out second opinions, if necessary. Do your homework and really pay attention to your body. It may take some time but I promise, it will be worth it in the end.