Your Stories: Rachel

I was 18 when I was first diagnosed. I didn’t understand the pain I was in. My partner at the time did not only not understand, but he didn’t care. It was a doomed relationship and ended. I struggled with migraines, extreme lethargy, and pain that would send me to my knees. It wasn’t just when I was on my period.

It was everyday for a couple of years. Then it kind of stopped. My doctor had told me that the more pain you’re in, the more mild the case. I knew it hadn’t gone away. I knew it was getting worse. Eventually, I started to have painful bowel movements on my cycle. Then it became an issue when I wasn’t. The pain was awful. In the earlier winter of 2018, I began having hot flashes and sensations of a bladder infection that were not consistent. The night sweats started and continued throughout the year. In September, I did a work out (as usual) and suddenly pain exploded through my pelvis and abdomen. I couldn’t sit for 30 minutes. I had the most painful bowel movement I’ve ever had, resulting in punching the wall to think of pain somewhere else and not just in my stomach.

I went to a doctor about my bladder. I was losing bladder function and the pain was constant. He recommended I see my OBGYN after learning I have endometriosis. My doctor did a laparoscopic scope and determined I had a severe case of interstitial cystitis secondary to the endometriosis growing on my bladder. It was also growing on my colon, ovaries, tubes, cervix, pretty much everything in that region. I stayed in pain fighting the bladder and fighting the endo. We had taken my off my birth control and it went nuts without a hormone regulator. When I was first diagnosed I knew a day would come when I would have to have a hysterectomy. I knew it was the only cure, and it was finally at a point where it was putting my life at risk. I didn’t have energy to do anything. Makeup, brush my hair or teeth, all of these things were a struggle to do.

I knew the time had come that I needed to make a very important decision. I am 25, no kids, and no quality of life. I was ready to fight my doctor to have the surgery done. He agreed with no argument that I was old enough to make that decision, and that it was really the best viable option for me. On March 6th, 2019, I had a total hysterectomy. A week after surgery, I had a hematoma rupture. My doctor was out of town so his on-call doctor looked at my charts and agreed, there was no saving any of my reproductive organs. It was growing into the lining of my stomach, which explain the nausea for months. He also confirmed what I always knew: kids were never going to happen due to the condition of my case. It was severe. More women should be aware of this and not be afraid to say it hurts. As females, we feel we have to censor our pain because to the world around us, “it’s not that bad”. To see the pictures of what was inside me and to hear more than one doctor tell me it was that bad, I felt validation for my pain after years of trying to cope and not talk about it. I’m recovering now from surgery and can already say that the pain I felt in my pelvis for years is gone. No woman should feel that the pain from endometriosis is normal, or that it’s not that bad. It is that bad, it can cause serious health problems, and you are not alone in your pain. Speak up, and speak endo. 

Follow Rachel on Instagram @big_red63