Discovering my porphyria triggers was a long journey

Note: This column describes the author’s own experiences with etonogestrel implantation. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

My arm was laid out to the side as my then fiancé and now husband, Daniel, held my hand. “Are you ready?” my doctor asked before sticking the numbing needle in my arm. “Yes,” I replied while clenching Daniel’s hand.

Seconds later, she was numbing my left bicep and preparing to insert into my arm a birth control implant called Nexplanon (etonogestrel implant). Typically, Nexplanon remains implanted for three years and is then removed or replaced.

When Daniel and I decided I’d get birth control, the pill wasn’t an option because I’d been on birth control pills years before and didn’t like them. They made me nauseous and I’d forget to take them at the same time every day. I know now that this may have been caused by acute intermittent porphyria.

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First, a diagnosis

About two months before I was scheduled to have the Nexplanon implant replaced in July 2020, I started having severe pain on the right side of my abdomen, along with nausea and extreme mood swings. I couldn’t even be in the same room as Daniel without getting frustrated, which was very strange for me because we have a special bond and hardly ever argue.

As these symptoms became increasingly difficult to deal with, I saw my doctor, who prescribed me Prozac (fluoxetine) for my mood swings and stool softeners for stomach pain. Thankfully, the mood stabilizer helped, but the stool softeners didn’t. Instead, the pain and nausea worsened each day. It felt like someone was stepping on my stomach while pinching it.

My doctor ordered blood work and an ultrasound of my gallbladder, which both came back normal. Nevertheless, something was very wrong with me. As the pain continued, early one morning on my way to the hospital, I Googled “symptoms of porphyria,” because my mom has acute hepatic porphyria.

A Mayo Clinic webpage noted the following for porphyria:

• Pain areas may include the abdomen
• Gastrointestinal issues may include constipation, nausea, and vomiting
• The skin may have rashes, blisters, and a darkening of the skin
• Nervous system dysfunction may occur
• Muscle cramping and weakness may occur
• Sensory effects may include a feeling of pins and needles and a sensitivity to light
• Anxiety, blood in the urine, a fast heart rate, itching, mental confusion, and seizures may also be common.

I was convinced that porphyria was the culprit of my symptoms. I discussed my theory with the ER physician, who recommended that I follow up with my primary care provider. The following day, I made an appointment, during which my doctor ordered more blood work and a urine sample to test for porphyria.

About two weeks later, I was on my way to work as an in-home caregiver when my doctor called to tell me that the lab results were highly elevated, confirming that I have porphyria. It was an absolute blessing to finally have a diagnosis and a reason for my debilitating symptoms.

I then scheduled an appointment to have my Nexplanon implant replaced. About two months after the procedure, I was still dealing with porphyria symptoms, which were worsening day by day.

One night at about 2 a.m., I woke up in excruciating pain and couldn’t empty my bladder. Searching for answers, I started researching porphyria causes and triggers and found that examples include exposure to sunlight, certain medications (birth control pills, sedatives, and anti-seizure drugs), recreational or illicit drugs, dieting and fasting, smoking, physical stress such as infections or other illnesses or surgery, emotional stress, and hormone changes during the menstrual period, among others.

And there it was: hormones. That led to my next discovery that etonogestrel implantation may not be safe with porphyria. The very next day, I called to schedule an appointment to have mine removed.

Unfortunately, that didn’t help with my porphyria attacks and symptoms because I was still having a regular menstrual cycle. These symptoms didn’t subside until a few months post-hysterectomy. While I still deal with chronic pain, fatigue, and nausea, I’m doing much better as a blessed porphyria warrior!

Note: Porphyria 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 Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.