A Thousand Medical Visits, A Lot of Pain Meds, & No Results For 13 Years

I’ve had endometriosis for as long as I can remember. Even though I didn’t know it until I was 21 years old. The sad thing is, it was never even brought up to me as a possibility by any doctor i’d ever seen. I started my period when I was 11, and I started getting physically sick every month not long after. I would randomly be in extreme abdominal pain, to the point where my parents brought me to the ER a number of times only to have me sent home a couple hours later having had an ultrasound and a blood test, a “clean bill of health”, and the recommendation to see a gastroenterologist about stomach acid and IBS/IBD. I would wake up in the middle of the night to be sick, go to school not feeling well and undernourished because I almost always felt nauseous in the morning and couldn’t eat breakfast, sometimes not even lunch. By the time I was about 16 my parents had labelled me as a hypochondriac and thought it was all linked to anxiety, and I was also put on birth control for pain and irregular periods. But the pill didn’t help anything, I actually felt worse. When I started college I was over 18, so I could go to the doctor without my parents permission and take control of my own health. When my immunity seemed to be taking a massive hit, and the pain never got better, and the bloating really started getting bad I went to the school clinic, the walk-in clinic, or the local ER. Where I got no relief. Instead the situation was made worse by multiple invasive tests including needles, internal ultrasounds, and CT scans. I had probably 20 pregnancy and STI tests even though I always told the doctor they weren’t necessary at all because it wasn’t a risk and i’d just had them done. But of course they ignored me, then sent me home later clueless.

Once I had a doctor give me a physical examination that hurt so much I was literally crying and yelled for him to stop, and in my opinion wasn’t necessary. All of the medical visits and invasive tests really take a toll on you in ways you don’t necessarily realize until later. And a lot of doctors didn’t know what to make of my pain and discomfort, but since it was in the lower abdominal region most of the time I would often get put on “mild” antibiotics for a UTI – ones which most of the time I didn’t need and would eventually cause me to be hospitalized for a C. diff infection that could have killed me, and resulted in my missing nearly a full month of my 3rd year in university. Before I even knew I had endometriosis, it had caused me to be labelled a hypochondriac by my parents, loose out on sleep, damage a small part of my stomach and esophagus from vomiting frequently, feel self conscious about being “sick” all the time and having “endo belly”, and eventually led to me dropping out of college. After I dropped out of college I decided to go to university and I pushed myself to get in, now under the assumption I had IBS/IBD and everything would be OK with a good diet.

So I got into university and by the end of my first year I was admitted to the hospital for appendicitis with unusual symptoms and taken into emergency surgery the next morning where I had the tiny organ removed. The surgeon told me he saw some endometriosis, and that I never had actual appendicitis, the endometriosis was simply growing on my appendix and causing general irritation in my abdomen. But since he wasn’t a gynaecologist, he didn’t remove any of it aside from what was on my appendix (since he took the whole thing out). So that was technically my first endometriosis-related lap surgery. It was also the first time endometriosis had even been suggested to me as the cause of my problems, and I barely knew what it was. The first question I asked was: “does that mean I can’t have kids?”. It took me over 6 months to get into see a gynaecologist, who’s solution to my pain was for me to get pregnant (I was a 21 year old student and she didn’t know my relationship status), or start taking my birth control pill back for 3 months so that i’d get my period less, or go on a medication that induces false menopause. She didn’t think it was necessary to do surgery to determine where the endometriosis was growing or what stage it was at either. Needless to say, I wasn’t comfortable with any of those things so I didn’t go back to her. I didn’t think it was healthy to potentially mess up my hormones by taking the pill continuously or go on a menopause inducing medication, and I didn’t want to have a baby – it was all incredibly overwhelming and made me really uncomfortable and nervous. The only thing she suggested to me that I agreed with (at the time) was to take pain killers so that I wasn’t in pain as much. So that was the start of prescriptions for percocets and other pain medications. I also briefly went on anti-depressants because I thought they might make me happier and therefore would make me feel up to going to my university classes more. I had medical documentation with the school so I often didn’t get in trouble for missing a lot of class, my professors knew I had a chronic illness and it really didn’t matter as long as I did the work.

Through university I often bailed on going out with friends in favour of staying home out of fear that i’d be sick or too tired the next day to get school work done. And usually even when I did stay home I was still too tired or sick to do much. I did almost all of my school work from my bed or the hospital, still got good grades, but it was a very different way of getting things done compared to how my friends and classmates did it. My goal became graduating, and to do that I felt like I needed to have my pain managed so I could sit in my bed and get good grades, and go to class when I felt up to it. And i’d have good periods when i’d go out with my friends. The problem with the graduation goal, was that it heavily relied on pain killers. And a lot of my friends, and definitely not my family even knew I was taking them most of the time. Percocets made me sick, so a lot of the time I either took one with an anti-nausea medication and sleep the pain away. Or i’d go to the hospital in pain, and get an IV or a shot of something stronger than acetaminophen and ibuprofen. I travelled, a sometimes did fun things with friends, but overall my life consisted of sleeping, laying in bed on pain pills with a heating pad or writing essays. To be honest i’m not exactly sure what happened in my mind, but after I finished school one my my close friends told me she was diagnosed with endometriosis and the doctor wouldn’t do surgery, and I snapped. I started posting about this disease on my social media, etc. Shortly after that I went to the ER – yet again – in immense pain, and this very strange thing happened. A doctor took me seriously. The next day I was speaking with a new gynaecologist, and we spoke honestly and about surgery to determine where the endometriosis was. Finally some progress after over 8 years of confusion! It was finally an opportunity to know what was going on with my body and something about it all sort of woke me up. I needed to make a change. I didn’t like my life. I went to work, I took pain meds, I was tired, I was in pain and in a bad mood, and if i’m being totally honest I was dangerously close to having a full on addiction to pain meds – maybe I did have one. Iv’e now had my second lap surgery, i’m 25 now and I JUST got the “official” diagnosis and found out where the endometriosis is growing.

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