I don’t feel rare, but I do feel unseen. I have been invisible since I was 12 years old. And now at the age of 31, I am fighting to be heard. However, I have to speak out now, because I am losing time.
When I first got my period at the age of 12, I knew something had to be wrong. There was no way that it could hurt this much. Each month I would die, with a heating pad and lots of medication and barely able to get up for school. It took a serious toll on my mental health because I didn’t want to do anything anymore. Looking back I can see how it was all related, my mental health, the other weird health issues, but at the time I just felt like everything was wrong with me. I was just a sick kid with weird things wrong. I also started to feel like everything was just in my head.
After finally getting on the pill, the cramps got better. I thought that was all that I needed. Take the pill, lessen the periods, or have fewer of them, and I can life normal. It was at this time I was diagnosed with PMDD. For those not familiar, it is a really bad PMS with severe mood swings and horrible cramps. I thought this would help solve my mood disorder and stabilizing my cycle would solve everything.
Then after becoming sexually active I developed chronic UTIs. I had one every month and it didn’t make sense. Finally after a year of this, during my annual exam with my OBGYN (obviously because I always needed refills of my pill, I couldn’t life without it), I learned something else was wrong. I was diagnosed with IC (Interstitial Cystitis) also known as Painful Bladder Syndrome. Apparently the lining of my bladder wasn’t expanding and causing the UTIs and that I need something called bladder instillations and pills 3 times a day. Once a month I would go to the OBGYN and have them insert a catheter into my urethra and insert medication which I had to hold there for at least 30 minutes. At first, it hurt, but then it didn’t bother because I got used to it. I got used to the 3 pills 3 times a day. I got used to the idea that this is what I have and I’ll always have to manage it because it was incurable. Eventually I didn’t need the instillation and didn’t need the pills. I thought I knew the name of my illness so I can deal with it.
Last year I started having extreme stomach pain. I would wake at night with nightmarish heartburn that would turn my throat into a volcano. I was in so much pain that I would lie on the bathroom floor in the fetal position, trying not to wake my husband so as not to worry him. I knew there was nothing for the pain and the “heartburn” pills would just take time. So I would lie there, imagining myself as a dragon to pass the pain and the time until I would fall asleep. One night I did ask my husband to take me to the ER. After waiting for an hour, after all the exams, I was told it was just heartburn. I received a referral to a gastroenterologist and sent home. I was angry for feeling unheard and belittled. Unfortunately the heartburn wasn’t the only issue, I also had uncomfortable bowel movements and constipation/diarrhea. Those were harder to talk about or share with others. Something felt wrong and I didn’t know how to put it to words. The gastroenterologist said I “just” have IBS and heartburn and gave me a diet book for the IBS and told me to reduce stress. I didn’t know what to say, I was shocked and embarrassed. Like, did I just go to the doctor to be told to eat different like I wasn't already trying, and that my stress is causing my illness, like it was my fault. Also around this time my cycle was off, although I was on the pill. I never thought they were linked.
Fast forward to now, because I am running out of time. Having this summer stopped taking the pill to become pregnant, each month I feel more and more sick. At first, I felt what was probably a normal cycle. A 3 day cycle with some cramps, by my standards light, and always on time. When TTC (trying to conceive), it's important to keep track of cervical mucus and ovulation to increase chances. The first month I didn’t have any, but I figured it was because I was just getting off the pill. I think I did the second month, but by the third something was wrong. Month 4 I was 4 days late and then the worst cramps of my life and only one day of bleeding. The next month was worse, still late and the pain completely stopped anything I was doing. The pain was so extreme that I felt nauseous and dizzy. I had trouble standing and concentrating on tasks. After the 5th month, I knew something was wrong. Following the painful period (i wish there was a better term because it pain is unreal and feels like my organs are being ripped apart), the pain continued. Now I have it all the time and pain medication doesn’t help at all. Each day I wonder when the pain will start and how bad it will be. Desperate for some relief I even started an Anti-Inflammation Diet to help reduce the severity of the pain. I have an appointment with my OBGYN this week and I hope she diagnoses me with Endometriosis. It is not because I want to have it, it is because I need the right diagnosis. If I want to have a chance to get pregnant without major medical interventions I need this treated.
So after 19 years of being misdiagnosed and overlooked by medical professionals, I am hoping to be heard. My endo makes it look like IC, like IBS, like PMDD, but it’s not. Because the pain persists. I am fighting to be heard and treated.