Hyperemesis Was Living Hell. It Continues To Be Misunderstood.

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By Jess
11 May 2023
Hyperemesis Was Living Hell. It Continues To Be Misunderstood.

Trigger warning: This post contains discussion of difficult topics.

Hyperemesis Was Living Hell. It Continues To Be Misunderstood.

The day I found out I was pregnant was the day before I started vomiting. And I didn’t stop. I had felt off for weeks. And I had an anxiety attack in New York City a few weeks prior. I felt weak, dizzy, anxious, and just not myself. I figured it was stress or too much travel, or both. But my period was late, too late, and it was the only thing I hadn’t ruled out. I took a pregnancy test, and it was positive.

My first trip to the emergency room was 3 days after my positive pregnancy test. Looking back I can’t believe I waited that long. I had been throwing up 24 hours a day every day. I couldn’t keep anything down, including water. My mom was coming to visit and Craig was supposed to pick her up at the airport. I convinced him I would be fine and told him to go. Once he left and I was alone I started to panic. I realized I was in fact, not fine.

My Aunt happened to be texting me, and I told her I felt really weak and dehydrated. She knew my history with severe migraines and drove over to check on me. The second she walked in the door she said we needed to go to the emergency room.

I don’t remember much from that first ER visit other than they gave me some anti-nausea medication and fluids through an IV. They did some bloodwork and sent me home with a piece of paper that said I had Hyperemesis Gravidarum (HG). The doctor didn’t explain the diagnosis, and I didn’t ask questions. I was in fact, still vomiting.

hyperemesis halted my life. each day looked the same. and it was a special form of hell.

As I continued to lose weight, becoming a shell of my former self, my doctor assured me it was “normal.” Within a few short weeks I had lost over 10 pounds. Each day was a cycle of endless vomiting. My body couldn’t keep down a single food or liquid. Even when there was absolutely nothing left, I’d sit in the bathroom dry heaving until my body was so exhausted and weak all I could do was lie on the floor in pain.

I’d spend most days crying myself to sleep or lying awake wondering how I’d make it through another day. The thing with hyperemesis is, it’s so debilitating you don’t even have the energy to advocate for yourself. My doctor was calling it morning sickness. I knew it was more than that.

What I didn’t realize at the time was the psychological toll it was taking on me. Aside from the physical hell of constant vomiting, nausea, migraines, dehydration, and full body aches, hyperemesis was slowly consuming me. I was afraid to say out loud what I felt most days. I no longer wanted to live. But I wouldn’t go so far as to say I wanted to take my own life, but I also couldn’t fathom making it through another day.

“I can’t do this anymore,” I told Craig most mornings. But I was too weak to do anything beside lay in bed and cry.

Little did I know I wasn’t alone. Women who suffer from hyperemesis are more likely to suffer from anxiety and depression during and after pregnancy, as well as suicidal ideation and PTSD. After suffering from it herself, one doctor dedicated her life’s work to understanding its cause.

Before IV fluids became routinely available in the 1900s, hyperemesis killed pregnant women often enough that medical literature listed excessive vomiting as a reason to induce abortion because of the danger it posed to the mother’s life, according to the New York Times.

Throughout history, women have been blamed and punished for suffering from HG. In the 1930s, hospitalized hyperemesis patients were forced to lie in their own vomit. To this day, women who suffer from HG are often not taken seriously by their healthcare providers.

It took months of suffering, thousands of dollars, and multiple trips to the ER and urgent care before I found some relief during my pregnancy from HG.

Eventually through word of mouth I discovered there was an FDA approved drug, Diclegis, to treat morning sickness. It was not covered by my insurance, the first prescription cost $800 for a 30-day supply. Eventually my doctor prescribed the generic version of the drug. By combining Diclegis and Zofran every day, along with taking an electrolyte supplement, I was finally able to start eating some foods and keeping down liquids. I had to take those medications for the entirety of my pregnancy.

It wasn’t until later that I discovered, through discussions with women who had HG, that there were other options, including receiving IV infusions of nutrition and hydration at home. Something that could have drastically reduced my need for emergency room and urgent care visits.

While I was eventually able to eat and function, I continued to feel weak, and suffer from serious anxiety throughout my pregnancy. My constant fear of needing to vomit kept me from leaving the house most days. The lack of nutrition in the first half of my pregnancy left me feeling constantly depleted. I fainted numerous times throughout my pregnancy, including once in a public bathroom while out alone (something I rarely did for that reason).

The physical effects of hypermesis went away after i gave birth. the mental toll stayed with me.

It took a long time before I fully recognized the trauma and PTSD as a result of hyperemesis. My fear of feeling sick or nauseous was completely debilitating and paralyzing. None of my doctors ever mentioned the possibility, yet studies continue to show that depression, anxiety and PTSD can persist for years after hyperemesis.

And yet, women’s health care continues to be drastically underfunded. Despite Hyperemesis hospitalizations costing patients and insurers about $3 billion per year, since 2007, the National Institutes of Health “has funded only six hyperemesis studies, totaling $2.1 million.”

Most of what I discovered about Hyperemesis and how to treat it came from hours of online research and support from others I found who had the condition. It breaks my heart when women who are suffering from it reach out to me looking for answers and help.

I am incredibly lucky that I had a strong family support system, and despite being so sick, a healthy baby. I had a flexible enough work situation that HG didn’t cost me my job, though many women are not that fortunate. Before I became pregnant I had never heard of Hyperemesis Gravidarum. Celebrities like Amy Schumer have brought the condition into the spotlight, but there are so many women who continue to suffer in silence.

Researchers are looking into the cause of HG and a small number of pharmaceutical companies are working to develop an anti-nausea medication for hyperemesis. If you know someone suffering from it, be their advocate, and accompany them on medical visits if possible. There are treatment options that can help provide relief. Finding healthcare providers who are experienced with HG is crucial. There are also online support groups. For anyone who has suffered from it, I hope sharing my story helps you know you’re not alone.

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6 Comments

  1. Heather wrote:

    I had HG when pregnant and financially had to go to work in a physical office most of that time. The very beginning was so debilitating with ER visits that I did have to take some time off and do some work from home, which my boss was supportive of to the greatest extent possible. I finally got the medication to help me some, but like you describe I was still vomiting every single day. I had to go on-site to my Government IT client sites, including travel across the country and even to Hawaii. I had a little kit including mouthwash that didn’t totally gross me out, tinted lip balm, unscented wipes to put myself back together again after every trip to the bathroom to vomit. I carried snacks around that I could usually keep down and got really good at throwing up and going back to work. I threw up in public restrooms everywhere, airplane bathrooms, on the side of the road, in ziploc bags in my car. It was debilitating, demoralizing, exhausting and I had to work through something that should have been disability. Unfortunately I didn’t push my doctors to help me justify a disability claim. People couldn’t believe that no medicine could stop this and continued to make comments about it being “morning sickness” and why was I sick all day, implying it wasn’t real. I sincerely hope this issue gets more attention and better medical options, but also more understanding of it in general.

    5.11.23 | Reply
    • Jess wrote:

      I’m so sorry Heather. I honestly can imagine having to into a workplace with Hyperemesis. As you said it’s a disability, and should be treated as such. No one should ever have to go through that experience. I can relate to your experience of insensitive commentary. I had one person tell me “it was a natural part of the pregnancy experience.” They had no idea.

      5.11.23 | Reply
  2. Lynn Caplen wrote:

    I’m so very sorry Jess that you were so horribly sick. I just had the normal morning sickness more with my first baby so I cannot even imagine what you went through . I have anxiety too but pregnant I was lucky . It came later . I lost a preemie at 8 months and I never quite recovered because they didn’t have the modern tools and NICU’s . I’m glad Marin is fine and that’s all in the past. Kids are hard and days seem 24 hours long until they get older . She looks amazing and you guys are doing a fantastic job!!!!

    5.11.23 | Reply
  3. Nora wrote:

    There is a study that shows there is a genetic component. A doctor at USC /UCLA had hyperemesis and consequently made it her goal to find the cause. The gene is GDF15. The doctor is Marlena Fejzo. I had the rotten luck of also having placenta previa and postpartum depression. My beautiful daughter is 36 and has a PhD and is a neuropsychologist.

    5.11.23 | Reply
  4. Megan wrote:

    Thank you for sharing this! What a nightmare. Hopefully this information will help someone out there get the treatment they need and deserve. It makes me so angry that so much of what women go through, particularly with pregnancy and postpartum, is brushed off as ‘normal’ and not given the attention and treatment it deserves.

    5.11.23 | Reply
  5. Kelly wrote:

    Thank you for sharing your experience. I had debilitating HG with all three of my pregnancies, for the entire time. No medicine helped, nothing helped. I lost 30lbs each time. I am a labor and delivery nurse and thankfully had great and helpful colleagues, but couldn’t take any time off because I don’t have paid leave and needed to save it for my maternity leave. I could have gotten a zofran pump but my hospital doesn’t allow nurses to work with a zofran pump, so I didn’t since neither PO nor IV zofran did anything anyway. It was miserable. I always wanted 4 or 5 children but am choosing to stop at 3, a hard and heartbreaking decision. I was sick the entirety of my pregnancy- vomiting every 30-40 times a day even with medication. I have terrible PTSD as well. Thankfully I had an incredibly supportive husband who worked from home, and while I couldn’t miss work, I thankfully only had to work once or twice a week. Thank you for shedding more light on this rare disease

    5.11.23 | Reply

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