My hysterectomy was one of the easiest parts of my medical journey
Severe pain and bleeding made the surgery the right decision for me
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This week marks the five-year anniversary of my hysterectomy, which I unfortunately had to have at only age 37. It was a huge, life-changing decision that would affect any plans to expand my family and could be dangerous if there were complications. This happened 10 months after I nearly died from a rare disease.
After an asymptomatic bout of COVID-19 in 2020, I developed an ultra-rare disease called atypical hemolytic uremic syndrome (aHUS). I’d already been diagnosed with immune thrombocytopenia (ITP) in 2019, and my team quickly learned that both conditions were affecting me.
ITP was causing my immune system to destroy my blood platelets, while aHUS was destroying my red blood cells (hemolytic anemia). Harmful blood clots were also forming in my organs.
When I went to the emergency room, feeling the worst I’d ever felt, I was in renal failure, with my kidneys functioning at less than 5%. But aHUS was affecting other organs as well. My liver was shutting down, and my heart and uterus were damaged. It was terrifying to go from thinking I was just “a little under the weather” to being admitted to the intensive care unit.
While aHUS most frequently attacks the kidneys, it can affect many other parts of the body, causing neurological, gastrointestinal, cardiovascular, or pulmonary issues.
Although pregnancy is a common trigger of aHUS, there is very little information available about how aHUS affects the reproductive system. In my case, blood clots formed in my uterine tissue, causing me to bleed and cramp every day for 10 months while I was undergoing dialysis, plasmapheresis, blood transfusions, and aHUS treatment.
It felt like I was dealing with a separate disease. I was given various medications to stop the bleeding and underwent a dilation and curettage procedure to remove excess blood and tissue buildup, a biopsy, an external and internal ultrasound, and exploratory uterine surgery, all of which were invasive, painful, and traumatic. Each procedure just made my symptoms worse.
By the last three months of this ordeal, I was back to needing blood transfusions biweekly. The cramping had also become more intense. It came in waves, similar to labor contractions. At their peak, they would last up to five minutes, stop for two to three minutes, then start again.
These waves would cause blinding pain in my stomach and lower back, forcing me to double over or curl up. It spiked my blood pressure (which was still uncontrolled due to aHUS complications), and I had panic attacks when the pain became too intense. This occurred a few times a day and was exhausting.
Physical intimacy was also completely out of the question due to pain and bleeding, which affected my relationship at the time.
After months of fighting for a hysterectomy, I was finally granted the surgery after speaking directly with the surgical team. I was nervous, especially since I was sick and weak, but something had to change. I was excited about potentially experiencing some relief.
Thankfully, aside from some excess surgical bleeding (a common issue with aHUS), the surgery went well with no major complications. My recovery was long, slow, and boring, but uneventful. I felt both shocked and blessed. I wouldn’t have any more cramping, bleeding, or invasive gynecological procedures ever again.
My hysterectomy was one of the best decisions I’ve ever made, and it was actually one of the easiest parts of my aHUS journey. It helped me feel a little more “normal” — something I hadn’t experienced since getting sick. My hysterectomy gave me relief and a huge part of my life back.
Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.
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